I am a 56 yr old divorced mother of 4 grown children. My diagnosis of pancreatic cancer came after a visit to the emergency room because of headache, nausea and brown urine. My liver enzymes and bilirubin were extremely high and consistent with gallbladder disease and stones which I did have. The doctor in the ER referred me to the GI doc which referred me to the surgeon. Because I had no pain, the surgeon was not confident that my gallbladder was the primary problem. The "shadow" seen on my pancreas was read as pancreatitis but he wanted me to see the GI surgeon for a definitive diagnosis. I had already spent a week in the local hospital and was ready to find out what in the world was wrong with me. I continued to have nausea and vomiting and was getting weak from not being able to keep anything down. I am a RN and realized that the doctor was having a hard time with my potassium levels, etc. I went to the hospital and it only took the doctor about 30 minutes after my CT scan to tell me that I had inoperable pancreatic cancer. He quickly left the room and the residents and medical students stayed and continued to inform me of my bleak prognosis.

At that point, I really wasn't hearing much of anything...6 to 9 months to live stood out in my mind. The next day they put in a G-tube and told me that I would now need to have Ensure through a continuous drip and nothing by mouth but ice chips. I was in a state of disbelief. My children took turns staying with me and thought I would not live very long. I also thought that I would probably be dead within a short time. All of this occurred in March of 2006.

After my diagnosis I went back to my home in Huntsville, AL and started seeing my oncologist. My biopsy confirmed that I had a malignant tumor on the head of my pancreas. I started on Gemzar and Tarceva and afterwards had 5 FU with radiation. My CT scan after I finished with radiation showed that my tumor had shrunk dramatically and I could have surgery. I went back to my surgeon and had the Whipple procedure and no further treatment.

It has now been over 3 years and I continue to be cancer free. I know that the Lord has blessed me and it just was not my time to go. I was so ready to believe that I was going to die that I sold my home and everything in it and moved to South Carolina with my daughter and her family. Now I feel wonderful--moved back to my hometown, bought another house and started over. I find joy in each day and the simple things in life: my children, grandchildren, church, friends and, of course, my animals. I can't say that I'm glad I had cancer but I know that I have a new appreciation for all of my blessings. May God bless and comfort all of you. Hang in there.

Helen D., Huntsville, AL 5/18/09

In August of 2008 I was diagnosed with pancreatic lesion and a suspicious lesion on my duodenum. November 6, 2008, I had the Whipple operation in Toronto, Ontario, Canada. After 9 and a half hours in the OR my fiancé Mark was told it went well and the tumour was totally removed. Later, on follow-up, I found out it was an islet cell neuroendocrine tumour and the duodenal spot was not anything. The doctor said it was stable and fortunately there was no spread to the nodes or liver. The Whipple has a slow recovery and digestion will probably take a year to adjust to my new set up. I can only say it's been harder than any physical challenge I've ever had. I know that after the operation there were people who were not as fortunate with the outcome and my heart broke and I prayed for those facing this information.

After 4 and a half months, I started to feel somewhat normal for periods in the day, meaning less pain and more energy. At 5 months I went back to work modified, that alone kept me sane. My family has been supportive but now that time has passed I need to face the physical and emotional challenges with a counselor and on my own. They become oversaturated and crave routine and normalcy, as I do. When do you believe it's over in your heart, it's difficult to deal with. Faith has been my only respite when I'm strong and in the many times that I'm weak. Realizing life is fragile and my time here is limited has really gripped my heart. Believing that God is in control and knowing an eternity past this life with joy peace and no more tears holds me up to a higher ground. I guess I'm a work in progress.

Shelly J., Ontario, Canada 4/20/09

Hello, my name is Robin. I'd like to tell you a story about my best friend, who also happens to be my dad. Dad was a 67 year old, hard working, in shape, non smoking, and non drinking healthy guy back in November of 08 when he started experiencing some nagging abdominal pains, especially after eating. Of course being the active and upbeat person he is, we rarely heard about it. Eventually, his new wife caught on that something just wasn't right and insisted he get this checked out. He started off with some X-rays and scans that eventually spotted "something" on his pancreas. For a while, the doctor refused to call it cancer or a tumor.

Two days before his 68th birthday, dad had me over for a little chat. He, with his wonderful new wife by his side broke the news to me about this "something". I tried to be tough and not break down but my mind immediately raced with negativity and I all I could think was the worst. I felt like I was hit in the face with a bat!! Despite all of this, dad was so strong and positive and told me that he intended to fight, and though we have a huge hill to crawl, we would just have to make every day a masterpiece as this is taken care of. I so admired his bravery. Wow! What an eye opener. "Making every day a masterpiece" is now my new motto for life. It just goes to show how unpredictable life really is. But of course, with that being said, I may have crashed my car and been killed on the way home. That's why it's so important for me now to make each day a "masterpiece".

Over the next several weeks, his wife and I joined him at countless doctor appointments and procedures. We spent hours in the waiting rooms at the hospital and the cancer center. The cancer center is such a beautiful building it took my breath away. I remember looking around at all the patients and their family members and thinking, “Wow! All of these people have cancer? But they look so healthy, so young.” It was at that time that my eyes were officially opened to the 'beast" they call cancer. They say God has a reason for everything, but honestly, I just didn't get it. Why Dad? Call me greedy, but I just wasn't done with that old man and I know for a fact I wasn't the only one. Eventually we were told that dad had a 2cm tumor near the head/neck of his pancreas and after mistaking the word "inconclusive" for "benign" as results of a test, we thought for a minute we were out of the water. We were then informed that the tumor was indeed malignant. Call us wierd-os, but in an attempt to be friends with the enemy, we actually named the tumor "Boomer". :)

We first met with the most skilled surgeon in the area for this type of thing and were told that because of the location, it would be too risky therefore surgery was not recommended at this point. The doc then suggested that dad go the chemo and radiation route. Dad went in a few days later and had a central port put in to prepare for the chemo treatment. When we met with the chemo doctor to get the game plan, we were told that chemo and radiation were so rarely successful with pancreatic tumors therefore he thought surgery was the best option. We were like.........now what?? Dad thought long and hard about it and after weighing the pros and cons, he expressed to the doctors that he wanted to go ahead with the surgery even though it was risky. He felt that at this point, what did he have to lose? The docs had a meeting and agreed to grant his wish and operate. The race began praying for a miracle!!! The prayers, well wishes and support spread like wildfire! We were told there were three ways the surgery could go.

1. The doc would go in first and look around with a scope. If he saw any other evidence the cancer had spread, the doc would close him up and we would probably see him in the waiting room in about an hour.

2. Once the doc was in, found the tumor in an ideal location and go in and remove it. Of course, that would include taking out 2/3's of the pancreas, the spleen and a few other possibilities. In that case, we would hear something in around 3-4 hours.

3. Similar to above, only the tumor would be wrapped in vessels and arteries and be very risky to deal with. I can't remember all the technical terms, but things would need to be disconnected and rerouted, and recovery would be 2-3 times as long. That surgery could take up to 8 hours or more.

Well, fortunately, the doctor came to see us in around 3 1/ 3 hours. Dad had the surgery we had been hoping for!!! As we followed dad to his room once out of recovery, he in a very groggy voice asked his wife "Did they get Boomer out?" His wife said, "Yes, they got Boomer out." We were so thankful that the surgery went the way it did however were still scared by what we were told by the doctor which was that although the tumor was removed, traces of cancer still appeared to remain in the area. The doctor told us he was sorry, and that he wished he had felt he'd gotten it all. Even with being told this, dad remained positive and did everything he was told to do to help with recovery. He was named a "star patient" on the oncology floor. They thought he would be in the hospital for around a week. He went home after only 5 days. The last morning in the hospital the doc who operated on him came in and told him that he had his pathology reports back and to his surprise, the margins of the tumor appeared to be clear, as did the lymph nodes and it appears he was cancer free!!!

Of course after what happened a month or so back, we almost don't dare to get our hopes up and hope this news isn't too good to be true, or we are somehow misunderstanding the doctor, but we sure are hopeful!!! Now, we know that dad still has a steep hill to crawl yet, but he sure is heading in the right direction, and we are right there with him pulling him by the hand when he needs it. I think I now realize the reason God did this.......He just wanted to make sure that dad and his loved one's eyes were open and that we realize that life is very unpredictable and that we need to make sure we are making every day a masterpiece. I can assure you, we are........

Robin V., Middleville, MI 4/2/09

For me, it all started with a yearly physical. My family doctor had asked me if there were any problems throughout the conversation, and I told him that I had some kind of "peanut" moving around, lower back pain and that I felt bloated all the time. He sent me for an ultrasound which revealed an abnormality in the pancreas, requiring further exploration.

About 2 months later, I had a CT scan which identified a growth in the pancreas. Then an endoscopy revealed that the channels were blocked and they could not access the tumor for biopsy.

I was referred to a well known surgeon in the Ottawa, Ontario area. After a preliminary questionnaire and interview, he concluded that I needed a distal pancreatectomy and a splenectomy in order to resume to my life.

Sadly, I was the worst candidate as I am a smoker, had very bad food habits and worked in a chemical environment for the last 20 years.

The surgery took place on September 10, 2007 and I was hospitalized for 8 days (God, that jello was good on the 5th day). I had minor leaking complications and was discharged soon after. My first objective was to get better from the operation where they ablated 90% of my pancreas and my total spleen. It took about 2 months before I could resume to normal activities.

Then the shock... I had to undergo radiation and chemo 5FU therapy for 25 consecutive days (without week-ends). They installed a PICC line which at the very least was obtrusive to my regular regimen, such as sleeping and showering. I had to take a bath with my arm wrapped in saran wrap and raised away from the water.

On January 2nd, 2008, they removed the PICC line and I resumed work for 3 weeks. I relapsed and was tired all the time with very little energy so I had to stop working. Because my spleen had been removed, I had to go for preventive shots (3).

Then my oncologist announced me that I would enter the "cow" system... (the one where you ring a bell when you're done with the chemo). For the next 6 months, I had to get chemo (gemcitabine) therapy every week. (3 on, 1 off). My first problem started right away as my white cell count was too low to take the drug. They reduced the potency and I resumed to treatment for it to be interrupted again due to the white cell count. They immediately put me on Neupogen which was an expensive drug that promotes growth of the white cells.

As time went on, I have had most of the symptoms until the last treatment where it hit me to the worst. My creatinine and high blood pressure hit the roof and I was having renal failure. I was admitted to the hospital with an illness called TMA (Thrombosis MicroAngiopathy). Because of the kidney failure, I had to undergo dialysis and plasmapheresis.

My red count went very low, and I had to have blood transfusion and a drug called Aranesp that promotes growth to the red cells.

I was hospitalized in September 26th, 2008 and stayed one month on the hospital bed fearing the worst was to happen.

Luckily for me, I regained strength and was released on October 23rd, 2008. I had a very slow recovery since and now I have to take numerous meds to help me through the day.

I now have a respiratory problem caused by the mix of the meds (they think) and I have to undergo a series of tests for the lungs, muscle and heart.

Once this is all said and done, I'll be a new man.

I have been in remission since November 2008.

Mike B., Orleans, Ontario, Canada 3/13/09

In July 2005 I was told I had inoperable locally advanced pancreatic cancer with confirmed metastatic lymph node involvement, given months to live, and offered palliative chemo. I was persuaded to enter a trial for m200 and gemcitabine every Monday for a year, and stopped after 1 year due to effects of trial on kidneys etc. No treatment ‘til hospitalised in July 2008--massive blood loss into tumour. I was given further 2 biopsies said it was neuroendocrine tumor. I was given a radical resection involving tail of pancreas, spleen and diaphragm. Follow up CT scan and OctreoScan and gut hormone profile satisfactory, and show no signs of any local disease or recurrence. I have worked full time due to being the only breadwinner in household. Back to work 8 weeks after operation.

Ray M., Glasgow, Scotland 3/10/09

My dad, Bill, my best friend, was diagnosed with inoperable pancreatic cancer Sept. 11, 2008 at age 57. His PET scan confirmed a 3.5 cm tumor in the head of his pancreas and a 3.2 cm tumor around his right kidney. His family doctor who diagnosed him gave him approximately 2-4 months to live.

A few days later he had a plastic stent inserted into his bile duct to get rid of the jaundice. His skin and eyes were the color of lemons. We found a good oncologist, and within 2 weeks my dad began weekly treatments of Gemzar chemotherapy. The two days following his weekly chemo treatments my dad gives himself a shot of Neupogen (to boost his white blood cell count).

After a month, he started to take Tarceva target therapy (daily) in combo with the Gemzar. Right before thanksgiving he had a CT scan. The scan confirmed major shrinkage to the masses. The 3.5 cm tumor in the head of his pancreas was now 2.0 cm. In Jan. 2009 he another CT scan. At this time both masses were immeasurable, because they were no longer visible!!! It s been over 5 months now since he was diagnosed, and my dad is doing great!! I thank God every day.

A lot of his pain has decreased, it doesn't hurt him that much anymore to eat, and throughout treatment he has maintained his weight. Since being diagnosed he juices organic fruits and veggies everyday (religiously!) and he stopped eating white sugar and white flour. He has a lot of positive support surrounding him. I believe in miracles, I believe miracles can happen to you, me, my dad and anyone with the will to fight. My dad has showed me that fighting cancer isn't a beautiful walk in the park, but you must keep your head up, you must continue to smile and laugh and live your life to the fullest.

Things happen in life that we cannot control but, we just need to stay positive, pray, and make the best of each and every moment. My dad is a strong man with a lot of life to live. There is no doubt in my mind that HE WILL beat this! I thank the Pancreatic Cancer Action Network for all the help and information they provided my family and I since day one.

Mind over matter!

Brooke, Capistrano Beach, CA 2/17/09

My doctor and others at the hospital asked me to write a motivational blog because I was their first patient to recover from a Whipple surgery in 4 days.

I am a 58-year-old man who jogs or walks fast at least every other day. I m 5 foot 6 inches, 164 pounds down from 184, since I started having problems with my appetite.

You might say the clock drove my recovery in the hospital. I found myself staring at the clock just above and to the left of the ugliest picture, a still life of flowers, that I've ever seen. I wanted out a.s.a.p. I found everything about the hospital alien. I knew I needed help. But for how long?

The doctors, nurses, and other care givers were all good people, and apparently competent, for all my vital signs remained normal and constant.

The night of the surgery was tough. The morphine shots they gave me seemed inadequate. I was still hurting ½ hour after a shot. I demanded they use something else that can kill the pain. I didn't know until later that there are limits to how much morphine can be given during the 1st 24-hours, while the anesthetic drugs are still in the body.

Day one of recovery was focused on recovering from the anesthetic and pain management. My doctor had them hook up a patient activated pain pump, so I could just push a button for pain relief instead of waiting for a nurse to give me a shot. It's a great concept. I needed some pain relief, but I found morphine counterproductive. For instance, I'd give myself a couple of pumps, when nurses reminded me to stay ahead of the pain. Then I'd close my eyes, drifting and dreaming for a while. It seemed like lots of time had passed, like an hour or so, but when I fixed my eyes back on the clock, only a minute or two had passed.

I took my first walk that evening using a walker. I felt like a 90-something might feel using a walker. The nurses and aids praised me profusely for doing so. They also said I should try to sit in the chair next to my bed for a while. Changing positions helps the stomach area heal.

I slept on and off all night. Finally, the morning of day two arrived. I heard that passing gas was my next milestone; something I felt would be in the distant future. I walked again at 8 AM, then again around noon, and again approaching 8 PM. By that time I was exhausted--not from walking. Exhausted from everything.

I had nurse Barry help position me so I could sleep on my left side. He did a nice job of propping me up with pillows. I generally sleep on my left or right side, and I remembered what they said earlier about how repositioning helps heal. My stomach area was very uncomfortable. Around midnight, I woke up completely. I couldn't sleep another minute on my left side, so I repositioned myself toward my right side. Along the way, while lying on my back, I had my first urge to pass gas. That was encouraging but I didn't sleep much more that night.

About 6 AM on day three of recovery, I passed gas silently for about 2 seconds. I told the nurse s aid. She whispered, “You'll be going home soon.”

A light at the end of the tunnel, already, I thought.

I passed more gas in 45 minutes and by the time the doctor arrived at 1 PM, I had passed gas more than six times. I had shaved, brushed my teeth, and washed up a little--as much as you can with at tube sticking out of your nose. I told the doctor that I felt much better. I had the very distinct feeling that a killer storm had passed, and although I had been ravaged by it, now it was long gone. He said, “That's a good way to look at it.”

Nurse Laura said that day three was a big day for me. Among other things, she removed the tube from my nose.

Early in the morning on day four of recovery, around 5 AM, I dragged my intravenous tree into the toilet room and had a bowel movement. On my way back a nurse's aide appeared. I told her I had a bowel movement. She said, “Oh, we like bowel movements around here.”

It was a transforming experience. On my walk back from the toilet I could feel the bottoms of my feet touching the floor normally for the first time since the surgery. I mean I felt my feet connected to my gut. If you've ever had a good foot massage, or have seen a reflexology chart for hands and feet, you know that the depths of our bodies are connected to our extremities through networks of nerves. I felt renewed for a few minutes getting back into bed. Who knew that having a bowel movement could be so refreshing?

As I lay resting in bed, I knew the finish line was in sight. I got dressed in street clothes around 10 AM and shaved for the first time without the tube in my nose. I asked nurse Laura to remove the IV, and told her to tell the doctor I'm ready to go home. She agreed that I looked fine, but warned me that I hadn't eaten any real food yet. So I asked her, “Why then, do they keep sending me broth, when I need to eat regular food to leave?” (Naturally, it was because I was ahead of schedule).

She shot a message to my doctor. “Ready to go home on day 4?” he replied. We've never had a patient leave on day 4. Order him some real food and tell him I'll be there this afternoon.

I wound up staying an extra night. The doctor wanted to see how my newly configured stomach area handled a lunch, supper, and breakfast. They also needed a stool sample before I left the hospital.

There's more to healing than science.

There is another thing I found myself doing that might have shortened my stay. I'm a person who loves music. I like the feel of sound and lyrics, not so much their intellectual content. But I felt so broken after surgery I couldn't feel much. When I hummed, for example, I felt it in my chest, but it abruptly stopped just below my heart. So I found myself humming quietly, if not groaning, often. I kept doing it while I was in bed or walking, especially when no one was around. I imagined it was like a homing signal, inviting all my innards back into the fold, back into one harmonious system.

I think it worked. If you're a singer you know what I m talking about. If not, try humming. Vary the depth and pitch until you feel it all through your body. It makes you feel alive and wholesome, feelings that I needed badly. Healing is all about getting back to normal routines and feeling normal.

I hope this helps.

Jack C., Maple Grove, MN 2/3/09

On April 15, 2004, I was diagnosed with pancreatic cancer. I had gone to my primary doctor for a cough. He ordered a CT scan and discovered the malignancy. My family and I met with an oncology surgeon who described the Whipple (the only solution possible.) Because of my age, 83, I was given about 10% chance to survive the operation. The surgeon said other factors (good health, family/social involvement, varied interests, etc.) made her willing to try. The operation was performed April 26, 2004. I did survive the surgery, but recovery was long and painful and covered about six months. I was monitored very closely during the first three years, but this coming April will be my first CT scan, etc., in a year. I manage the health ups and downs learning as I go. Some days are good and some not so good. But I am still involved in family activities, church attendance, and I had a book published July 20, 2004. I am a long-retired English teacher.

The Whipple Procedure was followed by 4 days in ICU, 31 days in the hospital, and about six months recuperation at home overseen by my RN daughter. After that I had CT scans, lab work, etc., done every three months for the first 3 years, then at intervals of 6 months. On the 4th anniversary, the time was extended to 1 year.

I have learned to cope with the results of re-arrangement and deletion of body parts. It is neither convenient nor comfortable, but sustainable, and worth the effort. I will return for my five year check-up (CT scan, lab work, etc.) on or about April 26, 2009. I am thankful to God for this life extension. I am thoroughly enjoying it.

Aline E., Cedar Park, TX 1/20/09

In late August of 2006 I was diagnosed with pancreatic cancer. I spent the next six weeks receiving two types of chemotherapy and radiation daily. On November 7, 2006 a Whipple procedure was performed at a hospital in Maryland. I underwent an additional eight weeks of chemotherapy following the surgery.

I am now a grateful two-year survivor. Additionally, I have returned to college and am a junior at the University of Maryland at College Park studying dietetics and would like to eventually work with cancer patients. My family and I recently raised funds and ran the Pancreatic Cancer Action Network's Purple Stride in Bel Air, Maryland.

Susan O., Annapolis, MD 1/6/09

I am the wife of a pancreatic cancer survivor. My husband, Randy, found out he had PC a couple of weeks after his 40th Birthday. It has been 20 months since this journey began for us and I am thrilled to report that he is back at work full time as a fire fighter in our community and is doing extremely well. He is a true inspiration to anyone going through something so unbelievably difficult and so out of our personal control. He had a positive attitude through the whole ordeal and continues to have that same attitude to this day.

At first, the symptoms he suffered were weight loss, darkening of urine and light colored stools. He never suffered from abdominal pain. When the jaundice set in we knew we were in trouble. That was our clue to get to a doctor right away.

As luck would have it, Randy's primary care physician did not have any emergency appointments available, so we chose to go to our local walk-in care clinic with a late night appointment. There, we met the Physician's Assistant that helped save his life.

She took one look at him and ordered blood work immediately. We could not leave the clinic until the blood work came back from the lab (she made the lab personnel stay past closing time to test his blood. We thank her for that!).

Randy's liver enzymes were elevated as well as the bile counts. She insisted that he have a CT scan the very next day. She ordered it for us and before we knew it, we were at our local hospital getting a CT scan done.

The news was not good. He had a tumor the size of a superball (one of those bouncy balls that kids play with) on the head of the pancreas. It appeared to be connected to or wrapped around the portal vein. Our local doctors did not agree on the possibility of pancreatic cancer because my husband did not fit the usual type of person who usually got PC. He doesn't smoke, is not over weight and doesn't drink very much and he is younger than most PC victims. One local doctor insisted that we see a specialist in Chicago. It was a blessing that we chose to follow his recommendations. It was malignant.

At first, Randy was considered inoperable, because of the portal vein problem. Treatments were discussed with us by the surgeons, oncologists and radiation oncologists. We went through it all. From chemo, to radiation, to surgery and of course, we discussed palliative care if that is what he chose to do. My husband chose to be a fighter and told all of the doctors to "bring it on!" and was as proactive as he could have been with his treatments.

Chemo was our first form of defense. Randy received Gemzar (gemcitabine) chemo once a week, when he was well enough to get it. The blood cell counts and problems with a stent he had placed in his biliary duct caused several delays in treatments (not to mention a hospital stay in Chicago). The nurses in the treatment room are some pretty incredible people! They helped my husband keep that great attitude up.

One of the hardest moments we had to face was the fact that he also had some sort of mass or tissue that was abnormal on his liver. The radiation oncologist suggested a biopsy so we would know if it, too, was cancer. I wanted to just cry like a baby at that point in the doctor's office. Randy just looked calmly at the doctor and said "let's do that biopsy so we know what we are dealing with." We were scared to death of the results. Of course, it took a week to get it back. The result was negative for cancer!!!! We felt that we had won a battle there. (The doctor told Randy that it looks like he won the lottery with the results from the liver!)

Radiation was the next form of defense that Randy received. He had 30 radiation treatments while also getting his weekly chemo treatment. He went to Chicago for each and every treatment because we knew we were in the right place and felt comfortable with all of our doctors. We refer to them as "The Dream Team." (He had to travel about 48 miles each way for his treatments). He never once complained and kept up the positive attitude, even when we knew he wasn't feeling so stellar. Family, friends and off-duty firemen would bring him in for treatments daily. He would come home and rest for a while after treatments and then put on his uniform and go to work at the fire station for the rest of his 24 hour shifts. He was determined to continue as normal of a life as he could. The fire department was a blessing and was so good for him.

The day came where we would find out if he could be considered for the Whipple procedure. The CT scan revealed the chemo and radiation did its job and shrunk the tumor down! That was September of 2007 and he ended up getting a surgery date of Oct 2nd, 2007.

Randy had the Whipple surgery on 10/2/07. It took 9 hours. He had his gall bladder, duodenum, 1/2 his stomach, part of the small intestine and 1/2 of his pancreas removed. He had many resections done and also had to have some reconstructive surgery done to his portal vein. He was in ICU only for 19 hours! He was determined to wake up and keep on moving forward! He is amazing.

I am happy to say that he was shoveling snow by December of 2007 and was getting close to being able to work light duty at the fire station. His will, persistence and determination kept him moving forward and it also helped me along this scary journey.

Chemo treatments were supposed to start up again in Nov, 2007 but his blood cell counts were pretty low. It was hit or miss for about 8 more months. He finally finished chemo in June of this year. He was also able to go back to fire fighting full duty on July 28th of this year! He enjoyed a summer of water skiing and any other activity that he enjoys doing. This is an amazing accomplishment after all he has been through!!!

Randy goes back to Chicago for checkups every 2 months and so far, he is doing tremendously well.

I will always maintain that Randy is my miracle. We believe that prayers do help us. God has been there through it all with us. We didn't know how this would turn out. We knew the chances and the percentages, but we chose to accept whatever came our way when this first happened and throughout each and every step of the way. We opened ourselves to our families and friends and shared as much as we could with them. They are true blessings. My husband has taught me that anything is possible.

It's been said: "It's not the size of the dog in the fight- It's THE SIZE OF THE FIGHT IN THE DOG!"

Keep Fighting! Anything is possible!!!

Ruth K.

(Proud Spouse of a Pancreatic Cancer Survivor!)

Ruth K., Aurora, IL 12/3/08

Pancreatic Cancer Action Network disclaimer:

Marcie's diagnosis is a rare form of pancreatic cancer called neuroendocrine carcinoma (also known as islet cell carcinoma).  The therapy she describes below, taking place in Switzerland, is not a treatment option for the most common pancreatic cancer, adenocarcinoma. 

If you would like to be connected with survivors of adenocarcinoma, neuroendocrine carcinoma or other pancreatic cancers through our Survivor and Caregiver Network volunteer program, please contact our Patient and Liaison Services (PALS) department at pals@pancan.org , or call 877.272.6226 and a PALS Associate will assist you.

My name is Marcie and I have pancreatic cancer. It began in August of 2000 at the age of 39 with stomach pains. I was diagnosed with a tumor in the head of my pancreas and given 3 months to live. I underwent a Whipple operation and the diagnosis was a non-functioning islet cell carcinoma that had spread outside of pancreas but, at a systemic level, no obvious tumors. I was offered radiation and chemo post Whipple which I declined.

I began an INTENSE internet search of this type of pancreatic cancer. I came to understand that the traditional chemos do not often work, and most oncologists' theories were to sit back and wait to see if it grows. I am not a “sit back and wait” person. I continued my research, which led me to a doctor in Iowa. I went to see him and he taught me how rare this tumor is and the treatment most effective was not available in states yet still undergoing FDA approval. I researched the treatment being done at a hospital in Switzerland. I know how bizarre it sounds to travel overseas, but after doing the research I was amazed at the tremendous success rate of this treatment.

I can't stress enough how important it was to find a doctor that specializes in neuroendocrine tumors. I credit my doctor in Iowa with saving my life. I researched insurances and was very pleased to see a lot of them paid for this treatment, even though it was done in Europe.

I remained cancer free until October of 06, which is when I learned my tumor had grown back and I had multiple mets to liver, bone, spine and pelvis. I immediately went for the treatment I learned of in Switzerland, my first treatment being in April of 07, my second treatment in May of 07. The treatment was painless, no side effects and I was home within the week. I am now 18 months post treatment and all signs of cancer are gone. I am back to work and feeling great. I take no medication at all. I URGE everyone diagnosed with this type of cancer to contact me through my volunteer activities in the Pancreatic Cancer Action Network's Survivor and Caregiver Network, and also to find one of the several specialists nationwide that deal with this type of cancer.

Marcie R., Pensacola, FL 10/24/08

My journey started as pain in the right side and back aches. I thought it was my gallbladder. My Dr. sent me to a gastroenterologist for an ultrasound. That is where they found a mass about 2.5 cm. The doctor referred me to a surgeon. When I met with the surgeon he explained that he would go in to see what was there and, if needed, I would have the Whipple procedure. I was pretty stupid at this point and did no research as to what he was going to do. I just said “ok.” At no time do I remember talking about cancer.

I had the Whipple on Oct 4, 2007 and my life changed forever. I had a tumor about 3.5cm that was very close to the superior mesenteric vein. The surgeon was able to remove all of it and all margins were clear with no lymph node involvement. There were some nerves involved though. The first 5 days were spent in ICU due to me developing pneumonia. It was a very difficult time for my husband and sons.

At day 6 I was moved to a regular room where I was finally told I had cancer and what my treatment would be. I don't remember falling apart I just remember feeling overwhelmingly sad for my family. At day 10 I was sent home. Two days later, I started leaking from my incision. Not just a small leak, but a lot. My husband took me to the Dr.'s office where the Dr. proceeded to remove some staples and the “dam broke.” I was admitted to the hospital where drains were put in to control the leak. I had developed a fistula. I was in the hospital for about 2 months to correct the fistula and fluid build-up.

Three days before Thanksgiving I was sent home. I didn't start my radiation and chemo until Jan 08 then I had 28 days of radiation with Xeloda. Also during this time I developed a kidney stone that landed me in the hospital overnight on New Year's Eve. I had a port put in in February that ended up with a blood clot. They removed that port and put in another. In April I started Gemzar and after only 4 weeks I had terrible stomach pain so they stopped for a few weeks. Finally I finished my Chemo in July of 08.

But I still had a lot of stomach pain. A PET scan showed some highlighted areas that we figured was a recurrence. So I was started on 5fu for another 2 months. My ca19 rose a little too. But after all of this I ended up with surgery in October for an anastomosis and scar tissue. They took 1/3 of my stomach with removed the closure and scar tissue. I am 2 weeks post surgery and hope this is it. I can only eat very small amounts still and the pain is not too bad. The surgeon and oncologist are talking about another round of chemo in the future. It has been a really rough year. I am proud to be considered a survivor.

Regina D., Summit, IL 10/22/08

Super Bowl Sunday, Feb. 3, 2008. I ordered ribs to-go for the game. I enjoyed the ribs and the game thoroughly went to bed happy. At 2:30 in the morning I awoke with severe stomach pain like a heart attack, only lower. My stomach was as hard as a rock. My wife was positive I was having severe gas so I took some pills and went back to bed. At 4:30 I awoke with the same pain. Finally, after the third pain episode at 6:30 a.m. we decided to go to an emergency-care center. I had been stricken with what I assumed was food poisoning weeks prior and believed this was simply a complication.

They did an X-ray, took some blood, and took a urine sample. My urine was the color of iced tea but, right then, it didn't strike me as all that problematic. It was only when I heard the attendant on the phone, through thin walls, asking another physician about my X-ray and why it appeared as if a balloon was floating inside me, that I became concerned.

I was referred to a nearby hospital for more testing an ultrasound, a CT, etc. There, a technician told me there were some odd scan results but that they couldn't quite tell what the problem was. After a day waiting there, the original referring doctor called me and told me that there was a 4 cm mass on my pancreas. She said I should go home and contact a doctor the next morning. I didn't get the chance.

By evening I was doubled over in pain once again and went right back to the emergency room. I was hospitalized for three days, to let my stomach get back to normal, while they ran more tests, asked me more questions, etc.

Interestingly, the hospital's attending doctor was convinced it couldn't be serious since I had none of the 'normal' symptoms of PC. I wasn't jaundiced, by appearance. I hadn't been itching, nor had back pains, or lost any significant weight. It wasn't until he read my family history of cancer victims that he got serious and sent me to a leading doctor specializing in fine needle aspiration.

Fast forward: I was diagnosed with malignant PC, underwent a full Whipple, spent 6 weeks in the hospital fighting delayed gastric emptying, and recouped at home for a month before returning to work.

It's now nearly 8 months since surgery and I have since been diagnosed as having a rare form of PC called Neuroendocrine Islet Cell, the same as Steve Jobs. I was told there was no benefit from radiation or chemotherapy so I have concentrated on living and changing my diet, exercising, and hoping for the best.

I get my next scan in a few weeks.

The hardest part of this for me, other than the physical aspects, has been the mind games. Is it really what they say it is? Is it still in there lurking, spreading, and taking over with the intention of killing me? Should I have gone ahead with treatments? Will I leave my family in good shape if things go bad? What's going to show up in this next scan? Anything? My liver? Questions, on and on.

But frankly, the fear of death has never consumed me. Only the idea of not having the days I'd imagined does.

So I try accepting that I am doing all I can and that it is what it is and that I need to do the best with each day given to me whether that be months or years. Overall I feel blessed to be among the surviving.

As for quality of life, it's great considering half of my pancreas is gone, 20% of my stomach too, and I have a nagging scar holding my belly together. Eating is certainly not as fun as it used to be (no more ribs, ever again) but I am eating and maintaining a healthy weight. I fight fatigue, gas, and dumping, as well as delicate sugar balances. Other than that I live well. I work full time. I travel a lot. I help my wife rearrange furniture. And most of all I appreciate every single day as it comes.

This past year has been the biggest challenge of my life. There were many days where I didn't think I could keep pressing on, and many where I didn't think I'd have any desirable quality of life. But the good news is the body is capable of incredible healing. And with the love of family and support of friends I have found the fight within me to keep getting out of bed and pursuing a new existence—one with a heightened uncertainty but one with a renewed sense of purpose.

If you or a family member is facing PC in any way, my only advice is: keep fighting. And keep focused on relishing the moment you are in for its good. One never knows, whether from PC or other, how many moments will still come. So take it one second after another, one step at a time, one day at a time, and on. It's all you can do.

Take courage and best wishes to you all.

Stephen T., Aurora, IL 10/21/08

I was 59 years old when I was diagnosed with pancreatic cancer on 4/10/06. I waited until I turned yellow, lost weight and had a lot of problems with my stomach before I went to see a physician.

I had to make an urgent decision, fast; time is of the essence and my physicians were scared, too, because they cared about me and they were right when they told me "you need to take action very soon." So I did.

I declined standard palliative chemotherapy and other standard interventions including radiation and potential surgical resection. I opted to pursue a nutritional and herbal supplement program. As of this date 10/07/08 I am doing just fine. I have follow-ups every 6 months: CT scans and blood work done.

My last CT Scan with contrast was on 10/06/08, and it indicated that my cancer has not spread to any other parts of my body, nor has the tumor in my pancreas grown larger.

So, there is hope for all cancer patients.

Eugene M., Conshohocken, PA 10/7/08

I'm looking at pancreatic cancer in a different way than most of these stories. I have pancreatic cancer but being the wife of a patient that 16 months ago was diagnosed with pancreatic cancer. It has always been said that if one person had cancer the entire family has cancer but one has the physical form. As a radiologic technologist and an ultrasound technologist I know that I was terrified when I saw my husband's Cat Scan. A 10 cm mass at the head of the pancreas was a shock and I was just hoping for a sick gallbladder at the being of this journey. My grandmother had passed away from pancreatic cancer when she was in her 80's and I knew a little bit of information about this cancer and I trembled in my soul with this news.

Danny's symptoms started by having back pain. I had shoulder surgery in February and I slept in his recliner for a week. When I was able to finally return to sleeping in our bed Danny started teasing me that I broke his chair because he couldn't get comfortable. Then the back pain started to become more persistent. It felt better standing up than sitting down or lying down. Danny has such a high pain tolerance he kept making comments about the discomfort but wasn't concerned. Our daughter had just graduated from high school May of 2007 and with all of the activities starting to settle down Danny started to notice more pain with a little bit of nausea. I thought, “Oh my gosh—you have a bad gallbladder.”

We did an ultrasound on Monday May 21 st and it showed a mass at the head of the pancreas but with the bowel moving in the area it caused some artifacts. The radiologist suggested that we clean out his colon and return the next am for a cat scan. We returned the next morning, and when the images started to appear I knew that we had a battle on our hands. Our radiologist had just visited a lecture on pancreatic cancer and he knew who to call. We had an appointment with an oncologist on May the 24th. He confirmed that he could do a Whipple procedure and he had on opening May the 25 at 8am.

Wow, did things start to move fast. We went home from the doctor's office and Danny and I had one night to talk negative thoughts and concerns, but we had a deal that after that night we would never talk negative about this disease or how it was affecting us. The next morning we had positive attitude and we had given this to God. We know that God was with Danny during his surgery and helped with his recovery. Danny stayed 9 days in the hospital; we should have stayed a few more days, but Danny was needing to get back to the farm. The farm gave his peace of mind. His bowel we found out was still a little bit sleepy so we had vomiting and dehydration. We ended up going to the ER for some hydration, but everything else was becoming more controlled. Once we healed we started Gemzar chemotherapy for 3 months, then we had IMRT radiation therapy for 7 weeks then we returned for 3 more months of chemotherapy. And as you can see, I refer to “we” because we each attended the sessions and we each had a role in post therapy reactions one way or the other.

Danny has had multiple PET Scans and Cat Scans and all looks good. Danny has worked every day since his release from the surgery (8 weeks off only).

I am only hoping that all that we have gone through in the past 16 months will be a guide for us, because 30 days ago I again was “diagnosed” with pancreatic cancer, through being the daughter of the man who was diagnosed with pancreatic cancer. My father who was having back pain and who was diagnosed with irritable bowel syndrome at first and after 4 Cat Scans finally showed a small mass in his pancreas. He just returned home recovering from his Whipple procedure.

I know that each of you have a journey to travel with this diagnosis, but know having a positive attitude can make or break the spirit. Don't let this break your spirit. A new journey has begun for my family, but as we bound together May of 2007 we all grow closer September 2008. I love both of these men who have been the biggest part of my life I will stand tall and strong for you each day of my life.

I now have a history of having a grandmother (my father's mother) and my father that have been diagnosed with pancreatic cancer, and we may have some genetic connection. My brother and I will have to be extra careful to really check ourselves by having extra tests done each year to catch this disease early. As a mother I really worry about my children--they have an extra increase of chances because of their father. We have all talked that if we watch and are aware we can win this fight together. I am supportive to each of you who is fighting or just beginning this journey.

Cindy C., Medford, OK 10/2/08

In 1999 I received the biggest shock of my life: I was told by my doctor that I had pancreatic cancer and I was given little hope for survival.  It began when I woke up one Monday morning with a stomach ache.  I thought it would pass, but on Tuesday it was still there, so I called my doctor.  He said to “give it another day,” and, if it was not better, to come in.  On Wednesday when my doctor saw me, he was alarmed.  He called in two nurses and ordered several tests, including a blood work-up, which he sent to the lab for processing.

On Friday, he called me and told me I had an appointment with my internist in one hour.  That doctor told me I had an appointment for a sonogram at the hospital and to come to his office as soon as that was completed.  After that, there was a CT scan, which indicated that surgery was possible.  An oncologist took over and sent me to the hospital for possible surgery.

I sat in the doctor's office, praying that he would be able to operate.  He agreed to operate and I thought I was home free.  However, when the operation was over he informed me that there was “a 90% chance” of the cancer returning.  So, I had 28 sessions of radiation therapy along with chemotherapy.  It was not easy, but I was determined to succeed—which I did.  I thought I was cancer free, but sometime later the cancer spread to the liver.  My oncologist said chemotherapy was available, but there was one chance in five of success.  However—it was successful and when I came into the office for treatment, the whole staff stood up and cheered.

I have been cancer free since then and am able to manage my house and garden, and, at age 84, I am still running my craft business for the benefit of my church.

I have been called a miracle and an inspiration to everyone because I have fought and won all the problems along the way.

I cannot stress enough that the reason for my success was early diagnosis, always following my doctor's orders and constant prayer—and never give up hope.

Along the way I realized that I had been given a wonderful life, a good family, good education and wonderful opportunities in my field of work.  I married and had three boys, and they are all doing well.  Now, I am able to use my talents to help less fortunate people.  I tell my doctor that he saved by life, but he doesn't take the credit. 

Lillian S., Cold Spring Harbor, NY 9/26/08

I love my life and the people in it.  I live life to the fullest because although it is true that we don't know what we have until it is gone--it is also true that we don't know what we've been missing until it arrives. The happiest of people don't necessarily have the best of everything; they just make the most out of everything that comes their way.

On July 9th of 2007, I was diagnosed with a rare type of pancreatic cancer, neuroendocrine carcinoma.  I was devastated, that was not even the word, there were no words that could describe how I felt!  I was a 23 year old woman getting ready to get married, just started the real estate business, sold 3 houses and now my whole world had come crashing down into little pieces.  I wasn't sure how to feel, but I felt everything.  I was sad and thought why me? I was mad at everyone in the world and mostly I was scared to DEATH!!!  There are not too many 23 year olds that can say they have had to look mortality in the face and thinks, “Wow, am I going to DIE!”. 

My mother made one thing real clear to me, no matter what the case, I WAS GOING TO FIGHT, and she was going to make sure that I did!  Although I agreed to go full throttle against the cancer--only more bad news kept coming. The cancer had spread to my liver, completely destroying it! On top of cancer, I needed a liver transplant, and fast!   So, I started out with 4 months of chemo to shrink the tumors, which was hell!  Once I had finished the chemo, I was so fortunate that the tumor had shrunk and I was able to have the surgery.  There are so many folks that do not get that opportunity.  On Dec. 10 th , 2007, I had a procedure called the Whipple Operation in which the surgeon removed the head of my pancreas to ensure the cancer was gone. 

After the operation it was time to put me on a waiting list to get a new liver. Now, I knew as well as my family that if I didn't get a liver soon, I was going to DIE. The hospital told us that I was eligible to have a living donor which meant someone who had the same blood type, body type and much more medical similarities could go under the knife and give me half of their liver!  Both livers would grow back, that is unbelievable. The Liver is the ONLY organ that can regenerate!  So, please be a donor.  My close family all wanted to be tested.  But, the first person that was tested was my cousin Miranda (27) who has always been more like a sister wanted to help me. She was a perfect match!  We asked her if she would consider being the donor for me and she said, "I never had to think twice about it, I knew if I didn't, Desiree would not be able to wait."

We flew Miranda from Florida and on March 3, 2008, we both went under the knife! Both surgeries went great and we were out of the hospital in 1 week!  Can you believe that???  I will NEVER be able to give Miranda the thanks for saving my life, but she knows she "SAVED" me that day!  After the liver transplant, Miranda was able to go back home but I wasn't out of the woods.   I had to do 4 more months of chemo, take 26 pills a day for anti-rejection so my liver wouldn't be rejected. Life was starting to look up! I am not saying that I didn't go through pure and agonizing HELL to fight this disease because I have and have been to the DARK SIDE of life thinking, “WHAT'S THE POINT???”.  I am saying... YOU CAN BEAT THIS CANCER!  I can finally say that I am CANCER FREE and a SURVIVOR!  I still take meds and go for check-ups often and will have to do both for the rest of my life but that is worth having a SECOND CHANCE at LIFE!

Thanks to my cousin Miranda for saving my life, my mother (Donna), father (Henry) and my sister (Hope) for never letting me give up, all of my close family--you know who you are, my best friend Britney for making me smile through it all, Brit's mom, dad, husband and his family for all of their support, everyone who had anything to do with remodeling my room, my fiancé's family and all who prayed for me. Last, but definitely not least--my fiancé, Danny for staying by my side NO MATTER how bad things really were in our lives. I LOVE YOU WITH EVERY BIT OF MY BEING!  If I have forgotten anyone, I am sorry, so I will end with this...to anyone who was there when I really needed you: I LOVE YOU ALL & WILL NEVER BE ABLE TO THANK YOU ENOUGH! So, to all of you who have been where I have or have known someone with cancer: just know that there is HOPE! I am PROOF!

Desiree H., Richmond, VA 9/19/08

Many of you know me, some may not. My name is Jeffrey and 5 years ago on July 1, 2003, I was diagnosed, after 12 hours of surgery with adenocarcinoma of the pancreas. I was given 6 to 9 months to live, and even the first oncologist I met with said radiation might extend my life to one year, maximum…..definitely a challenge at the very least.

My sweet and devoted wife Sally and I embarked on a journey….one that so many of the Pancreatic Cancer Action Network's clients begin and unfortunately face every day. It was a search for answers, for reasons, for reality and for life.

The list of tests, physicians, treatments and day to day maintenance I could list would most likely be paled by that of others. I am truly blessed. My treatments through the years, although complex at the least, were nothing in comparison to what I am about to share.

On July 1, 2008, Sally and I threw a celebration of life for my recovery…..5 years of survival, and according to my C.T.'s, exams, and blood work, I have reached this elusive goal totally free of all cancer.

We did not take this lightly. At our party, which was a celebration of life (mine) we had over 125 of our local Laguna Beach supporters show up….and even though this wasn't a fundraiser as such, we have forwarded $1,600 to the Pancreatic Cancer Action Network and more is forthcoming.

As many of you know, I have spent the past 4 years, since recovery, paying my great debt and fortune forward. I am a Survivor and Caregiver Network volunteer through the Pancreatic Cancer Action Network who can always be counted on to talk, be interviewed, be taped, and do whatever I can to those who find themselves facing the same insidious disease that I dealt with as well as those wonderful members of the Pancreatic Cancer Action Network. Over the years, I have lost many of my phone and email “buddies”. It breaks my heart every time I try to follow up on a member of our community and find that they have passed on. And with that in mind, not trying to be morose, I am forever grateful to my family, my friends and support group, my physicians, who to this day watch over me like Gods, and most importantly to the Pancreatic Cancer Action Network.

I am forever in your debt, and will be here for whatever help and support I can provide, whether it be for a Survivor and Caregiver Network request, or to help the organization in any means possible – those who know me know you only need to ask.

At this unbelievable occasion, both Sally and I want to send you all of our love, thanks, and indebtedness….I am here for all of you, 24/7.

Thank you for more than I can ever put into words.

Jeffrey Ross, Laguna Beach, CA 9/23/08

In late August of 1993, while on a summer vacation in Maine, I suddenly was unable to keep food down. Returning to Albany (our home at the time, as I was Chancellor of the State University of New York system), I was diagnosed with a malignant tumor originating in the ampoule, where the common bile duct from the pancreas and the liver enter the duodenum, presumably reaching up into the pancreas. The technical term that I lifted from my medical records was a pancreatic adenocarcinoma, f or which in September of 1993 I had a pancreaticoduodenectomy , or pancreatic resection, more commonly called a Whipple operation . The Whipple, as most of the readers of this will know, is a very big abdominal surgery. In my case, it cut out the entire common bile duct, duodenum, and gall bladder and about one-half of the pancreas and the stomach, and then engineered new ducts from the liver and the pancreas directly into the small intestine below where the duodenum had been. I was told that complications are common, and I was some 40 days in the hospital after the surgery trying to get rid of an abscess and pancreatitis.
 
The trick was to begin digesting food again. I eventually learned to thread a 23 inch nasal-gastric tube every night through my nose and dripped over the next eight hours some 14 hundred calories of liquid nutrition into my stomach. (The pump and the liquid were in a cute little blue backpack, so I could talk, drink, sing, and even eat a little while I was “on the tube.”) The nasal gastric tube is not as tough as it sounds. (Even doctors and nurses sometimes think it is harder than it is because they had to try it only once during their education and never really learned the tricks.) I did this for about 5 months, and I slowly regained about one-half of the 70 pounds that I had lost (which, as I was a good 35 pounds overweight to begin with, left me about where I should have been). But I am getting ahead of my story.
 
At the time of the surgery there were noted some lymph node metastases , or nodes contained metastatic pancreatic cancer that caused a tumor in my neck that my doctor eventually cut out. When this was noted on the CT scan after about a couple of months, I got some very discouraging news. (I even heard a doctor say something about “three to five months.”)
 
About this time, I changed my treatment  institution location to Buffalo and had the treatments (radiation and Chemotherapy) carried out under the direction of the original institution. Buffalo is where I had lived before moving in 1988 to Albany and where my wife still spent about one-half time as vice president for planning at the treatment institution. By February, I could no longer function effectively as Chancellor of the SUNY system and wanted to give the trustees time to start a search for a successor. So I announced my intention to resign as of the first of March 2004. I returned to Buffalo, bought a house (we had lived before in the official residence of the President of Buffalo State College), and I was now near my doctors and seven days a week with my wife.
 
In Buffalo, I continued the radiation and chemotherapy. I gradually regained enough of my weight. By the fall of 2004 I began a little teaching at the State University of New York at Buffalo. By January of 2005, I was teaching a full load, and by the fall of 2005, I began accepting doctoral students. Within a few more years, I had the largest number of doctoral students in the department and the largest grant support for my research­ which was on higher education finance in both US and international perspectives. In 1999, I received a planning grant from the Ford Foundation to plan a center for the study of international comparative higher education finance and accessibility: essentially a study of the worldwide shift of higher education costs from predominate reliance on governments and taxpayers to being “shared” with parents and students -- and the policies and tools (such as grants and loans) by which access is maintained or even expanded in the face of these increasing costs. (We're pretty used to this in the US, but it has been a terrific shock – and bitterly contested – in most of Europe as well as in the former Communist world and most low and middle income countries.)
 
When I went off the payroll at the University at Buffalo in the summer of 2006 I had brought in well over $1.5 million in grants, completed 20 Ph.D. students (most of them international), and planned and hosted conferences in Dar es Salaam, Nairobi, Arusha, Prague, Moscow, and Wuhan. I have written one single-authored and co-edited another 4 books, plus 7 monographs and reports and some 40 articles and book chapters. I am still coming into work finishing the last few students and my research, and another book.

 
Best of all, my two children have married, prospered, and produced three gorgeous and extremely precocious grandchildren.
 
I have been cancer free now (as of the fall of 2008) for more than 15 years. I know that I am incredibly lucky. I had great medical care, a wonderful wife, an evidently not too aggressive cancer, and undeservedly great luck.

D. B. J., Buffalo, NY 9.10.08

It's a dreary day in Chicagoland and I stumbled upon this encouraging site reluctantly.  I had my first hospital admission in my adult life over the summer aside from childbirth admissions 4 times within the last 14 years.  I don't claim to be a "survivor" yet in the literal sense of the word but I do hope I could be another source of inspiration for young people going through this tumultuous journey. I had pancreatitis last June and had met wonderful doctors and nurses as I sat on the other side of the healthcare spectrum. I am an ICU nurse too, you see....only as far as you can ever imagine from oncology as possible. Other than what I recall from school, this aspect of medicine and nursing is foreign to me.

I had a very compassionate surgeon and an equally efficient GI doc who guided me through the maze of tests--all of us hoping not to see what is likely the probable result.

To make a long story short, I was referred to the best of pancreatic oncology surgery in the Heartland, if not the nation. I had 4 1/2 hour long pylorus-preserving Whipple (I hope I said that right!) and he and his staff were very encouraging in their dealings with me and my husband.

It was a nightmare just to hear the words 'pancreatic cancer' but to have it dissected with a mind of a paranoid nurse was even worse! 

I had said I don't claim to be a "survivor" in the least, especially literally but having 'survived' a plunging depressed emotional rollercoaster those first few weeks, having worn my slippers thin coasting the hallways of the hospital hours and days after my surgery, having that great first fart a mere couple of days later and my real meal on the third day, not to mention the most awaited 'awakening of my GI tract' as I had a BM the next day....these are my tiny miracles! The happiest recollection I had after I opened my eyes was "Look, hon!", I told my hubby,"No pain!"

I have opted, after several heated discussions and immeasurable tears shed deep into the night, to take part in a vaccine study for pancreatic cancer and I have had 2 agonizing (but hopefully, rewarding) sessions already at the Cancer Care Center. Next week would be the start of the first cycle of my Gemzar chemotherapy, followed by weeks more of 5-FU with radiation therapy. In all honesty, not a lot of my friends could believe I actually look forward to that!

I am no longer in denial! I have accepted this as my challenge at this time in my life...not a roadblock. It would take more to stop me and at 37, hey! I am not half-done with what I set out to do.

So, in retrospect, I am writing this here as a banner of inspiration both to myself (seeing this in print is like a validation of myself and what I can and will do) and to those out there sitting, wondering what tomorrow might bring. Don't wait...set out to make your own trail. It matters not how long it takes you as long as you get to where you want to be in the end. This is my story...a beginning to a second life I am still blazing trails with towards a happy ending. The best thing is, I had pushed myself to make the journey and I am happy and grateful with what I have and see along the way today. As my doctor-for-life (Dr T) said,"Hey! There is always HOPE"...that, in itself, is worth basking in the hardships of the trail and pushing on towards the summit of my goal.....to grow old & beautiful with my husband and  wear fabulous gowns at each of my 4 children's weddings. And, yes, to attend Dr T's retirement party!

Jessi P., Arlington Heights, IL 9/4/08

This summer started out with my dad being as proud as a parent could be. I graduated from Purdue in May and my sister landed a wonderful job in the same month. My dad's family was blossoming and becoming everything he had hoped for. 

While at school, my mom had called and informed me that my dad had not been feeling very well and was complaining about back pain and not having the ability to eat without his stomach hurting. Days later, he seemed to have turned a yellowish color which was caused by a blockage and the pain had become so bad that he needed to be rushed to the hospital. At first the doctors believed that he had been suffering from pancreatitis and insisted he stay and have a stint placed in his duct which would help him be able to eat and process foods and bile... When the stint didn't work, doctors performed numerous tests and kept insisting that it was a hidden gall stone. It wasn't until we traveled to the University Med. Center that we discovered he actually had a tumour at the head of his pancreas.

After many PET scans we nervously waited for the call approving him for the Whipple surgery. It was a very emotional day for us all and was the first good news we had heard in weeks! When the day for the surgery came, our family was very up-beat and ready to head down the road to recovery. Three hours into the surgery, the doctor came out and informed our family that he had bad news... The cancer had spread into the liver and one lymphnode, he was unable to complete the surgery but rerouted a few things that should be able to help him be more comfortable. 

 It has been one week since the surgery and my dad is recovering at a fast rate! He isn't able to eat much, but that is to be expected. Next week our family will be meeting with a few doctors from a Cancer Center to "game plan" his chemo and radiation.

 This time has been very emotional for our family. We really do not know what to expect but we take one day at a time. My mom has been AMAZING and strong. Her faith and hope is an example for us all to follow. My dad stays up-beat and continues to joke and be his "old-fashioned" self. He takes great joy in the smallest things in life and embraces his life and family with amazing compassion.

We are going to get through this! My dad is a fighter and he has a great team (family and friends) behind him!! Our community has been supportive and their love lifts us up.

Our "journey" begins...  "Don't stop believing."

Melissa M., Granger, Indiana 8/20/08

I was diagnosed over six years ago with inoperable adenocarcinoma of the pancreas. I was given a death sentence of three to four months to live. It has been six years and two surgeries later and I am still around.  I would like to share my story with others to offer them hope because if I can make it six years so can anyone else.

No one can understand what being told you have three to four months to live means unless it is told to you. You are left with a horrible fear…fear of the unknown, fear of what will happen to your loved ones, fear of how the bills will be paid, and a fear of how you can get the strength to face what lies ahead of you.  After my initial diagnosis, I was consumed with my death sentence.  I looked at everyone around me and I thought how lucky they were.  They could still laugh and enjoy life.  Every time I looked at my children and grandchildren I felt sorrow because I would not be there in the future to share good times and memories. Everything I heard or read about pancreatic cancer made me feel even more hopeless. I kept thinking to myself that if I could just find one person who survived even a couple of years than maybe I could also.

During my time of misery, I happened to watch a television show about a woman who had been diagnosed with inoperable pancreatic cancer, but after receiving chemo and radiation she was able to have the surgery to remove the cancer.

That television show and the patient on there changed my life.  For the first time I felt there was hope that I might be able to survive more than a few months. I lived in Houston close to one of the best cancer hospitals in the world.  I found a wonderful oncologist who became my General leading me into battle against this horrible monster called pancreatic cancer.  After months of chemo, experimental drugs and radiation my tumor shrunk and I was able to have the Whipple surgery.  For three years the beast inside of me was quiet, however it returned in the form of three nodules in one of my lungs. 

I again went through chemo and experimental drugs for several months.  Last December, I had lung surgery to remove the nodules…two were noncancerous and one was pancreatic cancer. 

People have told me numerous times what a strong will to live that I must have.  In some of my darkest moments I wondered how it is living when your life is consumed with doctors, CAT scans, chemo, needles and blown veins?  How is it living when you are facing cisplatin, gemzar, tarveva, avastin, radiation and adenocarcinoma? NO, I did not have a strong will to live.  I survived because of the love of my family, the knowledge of my doctors and the support of my friends.  Most of all I survived because of the helping hand of my faith which led me to find HOPE through the stories of others who survived PC. These survivors and their stories gave me the courage to keep fighting.

Am I cancer free today?  No, I will NEVER BE FREE OF CANCER.  I know that at any time cancer is just a CAT scan away; that one CAT scan can bring the monster back and turn my world inside out and upside down.  In the last six years, cancer has shown me a world that I never knew existed.  It has shown me a world full of heroes; those brave strong people like you and your loved ones who fight this disease every day.  I will never be cancer free because it will always be with me; it is who I am today.

Susan S., Houston, TX 7/30/08  

This one may be hard to believe, but we have doctor's reports, lab tests and CT scans to support our claim—but since The Pancreatic Cancer Action Network is “the only national organization with a comprehensive plan to advance research, support patients and create hope in the pancreatic cancer community” I wanted to tell you about our MIRACLE.  Perhaps it will give others hope.  I know we are all praying for a cure.  My husband, Henry, was diagnosed with pancreatic cancer on August 1, 2007.  The doctor said it was Stage 4 since one of the tumors was wrapped around the Celiac Artery, making it inoperable.

To shorten this, he had 5 months of chemotherapy, then 5 weeks of daily radiation, then after a 3-week wait, surgery was scheduled (for April 9). We knew that when Henry went in for surgery there were at least 3 outcomes—he might not be able to make it through the surgery; the surgeon could get in and decide that he was unable to operate; or there could be a successful outcome.  (My husband had agreed to a pancreatectomy.)  Well, when the surgeon went in to remove the tumors, there was “no evidence of any tumors” – not even dead tissue!  He went ahead and did the Whipple “as a precaution.”  For those doubting Thomases (there are always those), they know for a fact that he was correctly diagnosed with pancreatic cancer because they did needle biopsies and got actual pancreatic cancer cells out for confirmation.  In addition, he had numerous CT scans and doctors watched their size and location during the entire treatment period.

We believe it was the prayers of many people that completely healed my husband.  The doctors know of no scientific reason for this—all tissues, biopsies, etc. have gone to several places for study and confirmation—now he is just recovering from the Whipple, which of course isn't any fun.

You may never want to spread this story, but we know there are so many people out there looking for a cure, looking for hope.  We think my husband's story gives others hope.  There have been two events in Henry's honor to raise funds for pancreatic cancer research (and a third one is planned), and although Henry got his miracle, we know many more are still looking for that cure.  So the funds which were received went to pancreatic cancer research.

Lou F., Grayson, GA 7/10/08

Diagnosed May 20, 1996 and now it is May 20, 2008.  Thanks for 12 years and not 3 months.  Keep hoping, keep praying, keep working.  Appreciate every day.  Thanks.

Stan H., Turner, ME 5/20/08

SUE'S STORY... (in my own words)

In 1999 I was diagnosed with Pancreatic Cancer which was treated with surgery (Whipple's procedure) along with radiation, followed by chemotherapy. I have always been reasonably fit and have exercised and eaten well most of my life, so after the initial trauma of the treatment, I continued to lead an active life.

8 years on...

In May of 2007 during a routine check up, I was unfortunately diagnosed with Stomach Cancer which was believed to be in the area of the previous radiation treatment I'd had back in 1999. Once again, surgery was the first option, followed by chemotherapy.

Soon after my surgery and just prior to commencing chemo, my brother and his wife visited from interstate. They had previously mentioned to my husband and I about their magical experience in Tasmania climbing Cathedral Mountain (2730 ft). They did this early one morning while on Christmas holiday and sat at the summit enjoying a coffee as they watched the sun come up.

Their experience totally resonated with me and seemed like a wonderful goal to have once I completed my chemo treatments. My brother said to me if I could climb the mountain, he would somehow get the BBQ to the summit and cook me a BBQ breakfast topped off with a glass of champagne. I guess everyone needs something out of the ordinary to help them through challenging times and this was my thing to do.

I finished the chemo treatments early in November and as we were planning the details of our Christmas gathering, this all became a real and possible goal.

After chemotherapy...

Not being in the best physical condition due to the taxing chemotherapy regimen and having lost a lot of weight and strength, I was also faced with an added dilemma of a low functioning pancreas. My pancreas was now destroyed from the previous cancer, and I had become diabetic.

Upon arriving at our holiday destination, nobody was particularly keen for me to attempt the climb, so my first challenge was to prove to them all that I was strong enough to climb the mountain.

So, the training towards my goal began with 5 km bike rides which I initially struggled with but amazingly progressed at a great rate. In fact, in no time at all, we were riding around 30 km a day over hilly terrain. We set a time frame of 2 weeks into our holiday with making it to the summit in mind. Nothing more, nothing less.

2 weeks on...

The big day finally arrived and it was a hot one so we set off at first light. There was myself and 6 other family members ready and raring to make it to the summit. With everyone's support and patience, I managed to keep up with the pace only pausing for a few jelly-bean stops along the way to keep my blood sugar at an acceptable level.

I did it, we did it!

Family and friends live through a serious illness with you, so to see the pride on their faces, the huge smiles and hugs - it is a very humbling and emotional moment.

A few weeks on... am I crazy or?

The same 6 of us were traveling to Tasmania with a more challenging mountain to conquer. Cradle Mountain (4944 ft) was a challenge of a far greater magnitude. We were faced with very cold winds and a climb that finished with a rock scramble. Everyone supported each other and worked together to make it to the peak. On a few occasions tears brought on by fatigue almost stopped us, but with the never-ending encouragement we finally conquered the climb to the top. More tears and hugs all around. I can honestly say if I had been doing this climb alone I would not have made it. The camaraderie and support was definitely what got us there as it was a difficult climb for us all.

Spirit and love...

The mind and body really are two different identities. We sometimes have a challenge in our mind but the body is definitely unable to carry it out. I felt such an overwhelming sense of pride that my body was up to the task. The aches and pains were well worth it, the bond that was formed was priceless and the views breathtaking. Then of course there was the issue of making it back down which was a 6 hour trek.

Never limit what you think you can achieve as you will be amazed at what your body and mind can accomplish.

Sue, Brisbane, Australia 5/15/08

A 5.5 cm tumor was discovered on the tail of my pancreas in November of 2006. I was 48 years old at the time. After an extensive endoscopic ultrasound at a University Hospital, it appeared surgery was possible. Surgery was attempted, but could not be done due to the location and advancement to the spleen and stomach. Using chemotherapy alone, the tumor shrank to 2 cm within 2 months, and the other areas where the cancer had spread diminished accordingly.

For 18 months I have followed a very 'whole foods' and organic diet and have had over 60 infusions, mostly Gemzar, oxaliplatin and Tarceva.

I am just as positive today as I was 18 months ago that I am going to get through this, and believe this is one of the reasons I have done well.

Susan K., Battle Ground, WA 5/14/08

In February, I had my 6th anniversary of being cancer free. I was diagnosed when I was 41 years old with pancreatic cancer. I didn't ask nor did I want to know what stage I was, I didn't feel it was relevant or important. The key was to beat it and win, which I did.

I had a Whipple procedure at a University Cancer Center with a surgeon who is the "go to" guy in these parts. I followed up with 6 months of chemotherapy with an oncologist at the same location. What a great team. I feel it's important to find the best experience to get the best results.

Let me give some straight forward advice, stay away from survival rates, they are not important or relevant to anyone's survival. They place a negative in your head that is hard to overcome. Do some homework and check with any resources available to find the best doctor, the most experienced you can get. In my opinion, go with tried and true treatments to get the best results, in other words, go with the treatments that have shown results.

A friend of mine was recently diagnosed with cancer of the bile duct. It was amazing how many doctors wanted to do the surgery, but lacked the experience. Statements like “I've done a couple” or “I believe I can do it” by surgeons may not be in your best interest.

I was discovered to have type 2 diabetes a couple of years afterward.

The hardest part is the mental game it plays on your head. You feel like you've been hit by a car and you're trying to find a way to get back on your feet. The cancer sneaks up on you and it's the last thing you suspect. Work through it the best you can and be sensitive to those around you. Everyone wants to help you and don't know how. Be as strong as you can for those around you. There's nothing wrong with an occasional pity party, but you need to not drag yourself and others down around you. It's just as hard on your loved ones as it is on you. Be as positive as possible, it will help you heal. You may want to try some positive affirmation tapes to help your body heal.

Jim S., Glendale, CA 4/1/08

STATISTICS CAN BE WRONG

Don't be unwilling to question the Doctor

On a warm April morning in 1992, my wife Carolyn and I were anxiously waiting at a hospital in Santa Rosa, California. We were waiting to see the Chief of Surgery.

The story begins in February of that year. I noticed a feeling of tenderness on the right side of my lower abdomen. There wasn't any real pain, just tenderness, and after all, I was over 61 years old. I convinced myself that I should expect some aches and pains and I let it go. But, when I went for a check-up with my primary care physician a few weeks later, I mentioned the tenderness to him. He examined me and told me that he thought that I had a hernia, and arranged an appointment for me to see one of the staff surgeons.

When I was 18 years old I was working with a bricklayer building a chimney on the roof of a house, and as kids sometimes do, I got careless and stepped off the roof. I was lucky enough to land on my feet, but I was not so lucky to have the landing result in a hernia on my left side. In any case, I was aware of what a hernia felt like and I didn't believe that I had one. But, I thought I might as well go through the process and see what would happen.

The appointment with the surgeon was the beginning of a remarkable series of events that led up to what, as Paul Harvey says on the radio, is “The Rest of the Story”.

After a short, cursory examination, the surgeon confirmed my suspicions that I indeed did not have a hernia. He made a few comments about my primary care doctor, and then told me that the symptoms I described could be connected to urological problems and suggested that I see an Urologist.

So, off I went to make the appointment with the Urologist. It was several weeks later that under the care of the Urologist, I was given all the standard urological exams and tests. Nothing came up abnormal in the tests. And after discussing the test results, the doctor said to me, “There are some things that do not show up on the tests you have had. Just to make sure I want you to have an ultrasound exam of the abdominal area.” After the ultrasound exam, when I was getting dressed, the doctor came into the room and said, “There's something there, but we can't tell what it is. We want you to have a CT Scan.”

Which brings us back to that Monday morning in April of 1992, sitting in the reception area at a hospital, in Santa Rosa, California waiting to see the Chief of Surgery to discuss the results of the CT Scan. I asked Carolyn to go with me because the Urologist told me that the scan had revealed “a mass on my pancreas”.

Carolyn and I were married on December 7, 1991. We both had been married before and had each raised three children from our first marriages. All of the children were grown adults and were not living at home when our marriages had ended in divorce. Carolyn had been divorced several years before, and I had been divorced in 1990. Carolyn and I had then, and still have, that rare bond of faith and trust in each other that sometimes develops and grows between two people who love one another and are fortunate to have met. We worked together at the same company, and we had become friends. We both fervently denied any interest in being married again, but our friendship grew into a deep respect and love for each other that neither of us had known before. I needed her with me for this interview.

After our marriage, we settled into the daily routine of work and play, and we were extremely happy with our lives. We were looking for a house to buy so we could move from our rented house and get a little closer to work. I was feeling good and didn't think that I had any health problems, until I heard the results of the CT Scan.

We were ushered into an examining room shortly after the appointed time. The Chief of Surgery came into the office shortly after we sat down. He introduced himself and put some x-ray films onto the illuminated viewer on the wall so we could see them. His manner was quite brusque as he showed us the x-rays, which showed a mass about the size of a good sized lemon on the tail of my pancreas. He explained that it was not possible to say for sure that it was malignant, but he indicated by all his comments that in all probability it was. He went on to tell us that pancreatic cancer is a particularly treacherous type of cancer. He said, “The survival rate of patients who have pancreatic cancer is about two percent. I have known a number of doctors who when diagnosed with pancreatic cancer have elected to not have surgery, but to go out and do the things they want to do and enjoy what time they had left.” What he meant, of course, was that with the small chance of survival, it would be better to not go through the trauma of surgery and treatments, but to go and enjoy the time left in my life. He left little doubt in our minds about how he felt. I looked at Carolyn and she was in shock at the statements the doctor had made. I guess I was not as surprised, because I had heard a number of times about people who had been diagnosed with pancreatic cancer and didn't live long after they found out about the disease. I will always regret that I had not told Carolyn about my doubts before meeting with the doctor. I think if I had, she would not have had to endure the shock of his saying what he did. But, when he made that statement, I looked across the desk at him, and I said, “That's not my choice”.

The surgeon looked back at me, sat back in his chair, and said, “Okay. If that is what you want, I will do what I can to move you ahead in the surgery schedule, and I'll start to make the arrangements today. I want you to know what we're facing. This will be an extensive abdominal surgery. I will have to go in and look at everything and if I have to I'll take out your spleen, I'll take one of your kidneys, you only need one, I may take part of your stomach, and part or all of your pancreas. But, if I get in there and find out your liver is involved, I'll sew you right up and do no more. I want you to go and see if you can give some blood to be used in surgery. See you next week.”

As it turned out, I was too anemic to give my own blood, and after several weeks of trying to build up my own blood we gave up and agreed to have donor blood. True to his word the surgeon did move me up on the surgery schedule, and he was ready to take me into the operating room on June first.

During this time, Carolyn and I had been looking at houses in and around Santa Rosa. Looking at houses helped to keep our minds off all the other things going on with arrangements and tests leading up to the coming surgery. As luck would have it, we found a house we really liked and it was close to work and met the other criteria for a house we wanted. So, we bought it. Now the job was to go through escrow and have the paperwork closed in time to get everything done before I would have to go in the hospital. We did it, just. The weekend before June first we moved into the new-to-us house. We were lucky to have friends and family help with the move and we had about 15 or 20 people moving things into the house and arranging furniture, putting up pictures and trying very hard to do everything for us. Carolyn and I had prepared for a cook-out for the whole group and on Sunday afternoon we barbecued sausages and burgers and served salads and other good things for everybody. After we said goodnight to our last guests about 8 o'clock Sunday night, we sat and relaxed for a few minutes. Strangely we didn't talk much about the next day. We talked about our friends and family, their kindness in helping with our move, and some of the things that occurred during the day that put smiles to our faces. We knew that all of our friends and family had us in their thoughts and prayers that night. After a while, we decided to get some rest for the next day.

The next day, Monday morning at 6 o'clock, we presented ourselves to the admissions desk at my hospital in Santa Rosa. After the paperwork and hospital prep work, they rolled me into the operating room about 8 o'clock the morning of June first. The operation lasted over three hours. Carolyn, with her children and one of our very good friends, had an arduous wait in the waiting room, but she told me, “It would have been tougher if the surgeon had come out in a short time, because that would have been a sure signal that there was too much involved, and he had ‘sewed you right up'.” After the surgery, I had the easy part. I was kept pretty well out of it for two and a half days in intensive care. I remember watching a digital gauge of my blood pressure and thinking, “Boy, that's as low as I ever saw it”. And once when there were a lot of people milling around my bed, one of the nurses tripped over the mass of tubes that were stuck in me at various places. When things were stabilized they moved me to my room and even though I was still hooked up to many tubes, I was able to get up and walk around the halls pushing my tree of IV bottles. Every day, for the next few days, the surgeon would come into my room and ask me, “How are you, have you had any gas yet?” At that point it was really good to have a joke to laugh about so the whole family took advantage of it, and everybody would ask me the same question.

Thanks to a surgeon, wise enough to determine that a diagnosis of a hernia was wrong, and who cared enough about a patient that he suggested I should see a urologist for the symptoms I described; to a urologist who was steadfast in his efforts to diagnose my illness; to an incredibly skillful surgeon who had a lousy bedside manner but great hands and great knowledge, who took out the mass and a third of my pancreas, explored all the other organs and found no evidence of their involvement, and then “sewed me up”; and to the awesome support of my wife, Carolyn, and family and friends, I came out of the operating room with a new chance on life.

The mass was malignant. The hospital did all the lab tests and presented the tests and surgical report to the cancer board, a group of doctors who examine unusual cancer cases. All this was happening during the ten days I was in the hospital and several weeks I was recovering at home. The board was not able to come to an agreement on what type of cancer I had. So, the hospital decided that I should have my case reviewed by a University hospital. The local hospital made the appointment for us to see a panel of two doctors at the University the next week. Carolyn and I loaded up the files and headed to the University. The doctors there gave me a brief exam, and we talked with them for several hours. They took the files and told us to come back in a few hours. We had leisurely lunch out in the avenues near Golden Gate Park, and found ourselves back in the waiting room at 2 o'clock in the afternoon. Meeting with the doctors, in a conference room there, they confirmed that the type of cancer I had was pancreatic cancer. They told us there were three possible treatment recommendations they would make:

1. Do nothing and assume that the surgery cured the cancer.

2. Have radiation treatments only.

3. Have chemotherapy and radiation.

My hospital told me that the choice was mine. So, I told them that my choice was to do everything available to make sure that the cancer was gone and would stay gone.

At the end of July we were ready the start treatment. Five days a week for twelve weeks I had radiation treatments, along with chemotherapy twice a week that was designed to enhance the radiation. During that time my oncologist ran every test he had available to him. Included were two bone scans, CT Scans and a blood test every few weeks along with constant encouragement for the treatments. Completing the treatments in October, I went on to see my oncologist for the next three years, until we moved out of the state. At our new home I was fortunate to have equally good follow-up examinations from our new HMO and after 13 years I no longer see an oncologist, but my primary care doctor follows up with a blood test every year.

Today, I have no recurrence of cancer and I am a happy, healthy 76 year old man. Carolyn and I have the pleasure of enjoying our children, grandchildren and great grandson. How lucky can one man get?

I believe, for the most part, you make your own luck. But with the love and devotion of my wife Carolyn, the good thoughts and prayers of our family and many good friends, the skill and concern of the medical staff at my hospital, and luck by any description, my story has a happy ending!

I know that many people have not been as fortunate as I have been, but maybe someone reading my story will question the suggestion that an illness is not curable. Maybe they will believe it is worthwhile to pursue every course of action available to them to capture the opportunity to be cured. And that good medical care, a loving family and friends, and your own kind of luck can save your life.

I hope so!

Glen G. 3/20/08

I'm writing this to celebrate my mother's Two-Year Anniversary of her diagnosis; this is for you mom:

It was exactly two years ago today that we received the news that my mother's pancreatitis was actually pancreatic cancer. She'd been in and out of the hospital from January 31, 2006 - March 7, 2006 with what we thought was pancreatitis or gall stones, but when the phone call came with the diagnosis it devastated our entire family. At only 55 years old we all thought mom was too young for this, but we now know that pancreatic cancer can strike anyone.

In an effort to help my mom who was too tired, sick and weak to determine her own course of action, I developed a strategy plan and quickly became President of Team Operation Kick Cancer's A**. We learned that mom's tumor was still small enough to potentially make her a candidate for the Whipple and we got on a plane to travel to see if a cancer center would operate on her. On March 23, 2006 my mother underwent the Whipple procedure and our family held vigil for 12 hours in the waiting room, constantly calling home with updates for the hundreds (literally) of people who were scattered in churches, schools and at home praying. At 8:30pm that evening we got the news we yearned to hear: clean margins, tumor gone, mom did well.

Two months later, and cancer-free, mom started a regimen of 5-FU and Gemzar, 6 weeks of daily radiation, and a follow-up of 5-FU and Gemzar. For 11 months the cancer was in check but in January 2007 her CA 19-9 had risen quickly and we all knew what was coming next. The cancer had returned to her liver and surrounding lymph nodes. Team Operation Kick Cancer's A** was started again. Back to the cancer center we went, but when we learned that surgery wasn't an option this time, mom decided to become part of a clinical trial at our local hospital and receives chemo in bi-weekly doses which she wears for 48 hours.

It was 12 months and 3 weeks ago that the treatment was started. My mother feels well, looks good and maintains an ACTIVE (sometimes too active we think) lifestyle. She is a survivor in every essence of the word.

Yesterday she had another CT scan and we got some more encouraging news - the largest tumor in her liver appears to have potentially shrunk and the center appears dead. The cancer is still there, but she can, does and will continue to live with it until it goes away - we all believe this and pray daily.

I wanted to share my mom's story with all of you because she is the definition of hope, faith and courage and we do believe in miracles and think we've had a few cross our path already. She is a testament to those that believe you cannot live with this disease - you can, you will.

I'm not the one living with cancer, but I live it every day with my mother and I can tell you that it's her attitude, her faith and her determination that keeps her fighting this battle with vitality and strength. Even when the cancer returned, which we all know is common with pancreatic cancer, mom has not given up - she's my hero and she makes me want to be a better person.

I'm getting married this summer and asked my mom over Christmas if she would like to walk me down the aisle with my father. To my surprise, she said no (she and dad are happily married too). Then she told me that she wants to celebrate seeing me walk down that aisle and she's waited her entire life for that moment. And Mom, when you read this, I want you to know that when Dad and I walk down that aisle one of the greatest joys of my wedding day will be seeing you there at the end, watching the daughter you've raised, taught, loved and inspired take her husband and start our life together. There will be tears, but they will be of sweet joy and celebration.

Mom, Happy Anniversary. Keep fighting, keep believing and keep your faith. We are right there with you every step of the way and I love you very, very much. Cheers to you today and to MANY more anniversaries!

Kellie S., Pittsburgh, PA 3/7/08

Hi. I was diagnosed with stage IV pancreatic cancer which spread to the liver in January ‘06. I had never smoked, don't drink, did exercise and was in good health up to this time (although there is a history of cancer on both sides of my family). Since then I went on Gemzar and Tarceva for about 15 months. My scans had been showing no detectable cancer for the last 12 months. I had a biopsy on my liver which turned out negative and tried going off chemo for about 6 weeks. Unfortunately, the cancer returned and I went back on the same chemo regimen. It didn't work as well the second time and in October ‘07 I switched to Gemzar and oxaliplatin. That seemed to work as my last scans from January ‘08 are clear again.

I write this to offer hope to everyone who has to go through this. I have relied on my faith, family and friends to get through this and learned that these are the most important lasting things in my life. I don't know for sure what my future holds but I am sure that cancer and death will not be the end for me since my faith promises me a perfect cancer free life after this one. I have found a good cancer support group at a church and talking to the many survivors there has been a huge benefit. I also have been fortunate to have kept working most of the past 2 years and I try to eat healthy and do some exercise, mostly walking and light weightlifting, to keep my strength up. I pray my story will offer some encouragement to you.

Mark P., Bartlett, IL 2/22/08

I have been looking for a site like this since being released from the hospital in April 2006. No one else can really relate to my experience, and here I was able to read about other survivors. And, if you look at the web sites and the stats, you would think that there are none! Reading these inspiring stories has given me such a lift.

I was told that I had a "mass" on the tail of my pancreas in Dec 2005, with the only chance of survival being surgery! Honestly, after going home and reading related web sites, I thought I was going to die of fear before I would even have the surgery. I went into denial for 6 weeks. Then I thought, I'll just juice-fast that 2.5 cm tumor away. I fasted for 21 days on the master cleaner-lemonade diet. I felt great after and lost some needed weight, but the repeat CT scan showed that it was still very much there. So I surrendered and consented and had a distal pancreatectomy and splenectomy. I now have 50% of my pancreas. One of the issues following surgery was menopause; hot flashes started about the day I got home from the hospital, and I think I've aged a lot. Oh well. Panic attacks, which are so not me, are an issue right now. I was, in my youth, a rollercoaster junkie; now I drive slowly in the slow lane. Depression set in because my job of 22 years refused to take me back when they found out what kind of surgery I had. Don't worry, I am pursuing that issue. And, you know what can follow job loss, (I am a sub-prime mortgage poster child), STRESS as never before, bankruptcy just to save the house, snowball, crash, burn. So, this all has affected my healing process. But, I am keeping my head up.

A CT scan last April showed all is well and I will expect the same when I go for another this April. Although, I need to believe that I am healed and stop tripping every time I feel any kind of pain. Once the stress level of being broke subsides, I know will feel more confident. Because you know how you feel when you're broke, pretty darn lousy, right? I will use this site now for continued support.

I am so very grateful for my life now. I will admit that I used to be a little over confident, a little arrogant, but this experience has forever humbled me. I am a soon to be a 51 year old African American woman who intends to live life beating the odds and those stats that I've decided don't apply to me. By the way, I don't eat junk anymore. I'm loving that tonic called Noni, I am eating those digestive enzymes, the omega 3, flax oil, multi-vitamin with iron, guzzling carrot juice, and trying to do something about this ugly belly fat. I am using the very dated Jane Fonda work out tapes. Blessings to all who read this and much success in staying positive and healthy!! BE WELL, LIVE LONG!!

Sheila D., Berkeley, CA 2/10/08

In January 2007, I began experiencing symptoms of jaundice with dark urine, light stool, and terrible itching over my entire body. A few months earlier I had joined Weight Watchers because I had been battling obesity for years and was finally fed up with being so uncomfortable. I had been diagnosed with diabetes in 1999 and the weight did not allow me to manage the disease very well. After I had lost about 30 pounds, I noticed that my blood glucose levels were going up instead of down; in fact, they were hovering in the high 400s to 500s. Realizing something wasn't right, I went to my primary physician for a comprehensive blood test.

A few days later, I received a phone call from the doctor. He said my liver enzymes were off the chart and he wanted me to have an abdominal ultrasound and make an appointment with a liver specialist to see what might be going on. Obviously this news was disturbing and I asked if this could be life-threatening. He responded that it was probably a treatable condition and that it was not life-threatening. Was he ever wrong!

A week and a half later I went to the liver specialist and after listening to my description of the symptoms and reviewing my blood test results, he said he wanted me to have an MRI immediately, that day if possible, but no later than the next morning. I went in the next day and was told it would be a few days before the results would be available, but I got a call that afternoon from my doctor. He had gone to the hospital shortly after the test was completed and asked the radiologist to read the scan as soon as possible. The news was disturbing, but the reality of the situation had not registered with me yet. Even though I was told there appeared to be a mass in the pancreas and that I should be "very" concerned, I had no knowledge of pancreatic disease, so I just trusted that everything would be alright. In the same conversation, this doctor told me that he had already made an appointment for me at a major hospital in Chicago to have a test called an ERCP. He saw the urgency in the situation and acted accordingly. To this day I believe I owe this man my life.

The results of the test revealed a 2 centimeter mass on the pancreas that appeared to be contained. The next appointment was with the chief of surgery who told me that surgery was the logical next step and that he would perform a Whipple procedure. At no time did he mention cancer, and I was confident that there was none present.

I was in surgery for about eleven hours, but from the onset, I was blessed with one miracle after another. After being told I would likely spend up to three days in the ICU and ten to fourteen days in the hospital, I spent less than twelve hours in the ICU and was home in just under seven days. It wasn't until I went back to have the staples removed that I was given the news that the diagnosis was cancer. Even at this point, however, the doctor was confident that he had caught it in time and that I would be fine. I knew only time would tell, but I am grateful to this man for his expertise as well as his positive attitude and perpetual encouragement.

The recovery from the surgery, which took place in mid-March, was long and somewhat tedious due to a few infections of the wound, but I am doing well now.

The message I want to send to everyone who is diagnosed with this terrible disease is that it is treatable and extended high-quality life is not only possible, but likely with the right attitude and faith.

Paul B., Wheaton, IL 2/7/08

It all started in 1998 when I was told I had large tumor on my left kidney. I had the tumor and adrenal gland removed that year. Then in May 2002, I was told I had pancreatic cancer and an option of two more months to live or to go through a very complicated and "dicey" operation with a maximum 50/50 chance to survive. The surgeon found out during the procedure that my whole pancreas was filled with a tumor. He removed my spleen, ENTIRE pancreas, gall bladder and bile duct. They basically "lost" me on the operating table due to heavy bleeding, but were able to bring me back.

It was tough recovering. I had to go through chemo treatment for 6 months. I changed careers, moved from overseas to the US and got on with life thanks to family, friends and employer support.

In 2005, it was that time again. Some pancreatic tumor cells had obviously been left behind. I had a large tumor on my stomach that had fused with my colon. I proceeded with 4 months of chemo and radiation, which was extremely tough. Due to the chemotherapy, I lost all the skin on my feet and hands. I then had half of my stomach and part of my colon removed. After this, I went through chemo treatment again. In 2007, cancer stuck its ugly head up again showing enlarged and growing lymph nodes in my abdomen. We are treating it and that seems to be working with minimal side effects.

Soon it will be 6 years without a pancreas! The last 5 years I have been working full time, traveling the world for my company. I am getting tired, but it is worth every extra day to be able to enjoy friends, and family. There is hope for everyone in the darkest of hours. The medical profession has not seen it all just yet!

Dennie N., Cary, NC 1/23/08

I am 51 years old. On August 16, 2007, I was diagnosed with pancreatic cancer after having symptoms of painless jaundice and itching. I was very lucky that, due to the size and location of the tumor, I qualified for the Whipple surgery. I was sent to a surgeon at a cancer center in St. Louis, MO. The surgeon and his wonderful staff performed my Whipple surgery on September, 11 2007. I was up walking the next day and released from the hospital on September 17, 2007. My recovery was amazing according to my doctors. I only had pain from the incision, and that subsided after the first week. I was taking walks and playing with my granddaughters the next week. On October 24, I started a 28 day treatment session of radiation with 6 days of chemotherapy with the drug 5-FU. I had no side effects. I was then given a month off and then resumed my second round of treatment starting January 3, 2008. This round I am receiving straight chemotherapy with a pill twice a day for two weeks of Xeloda and a chemo drip once a week of Gemzar. Again, I have had no side effects.

I will fight this battle with every ounce of fight I have in me. I know that without the love and support of my loving husband, my courageous daughter and her husband, my brave son, my three beautiful granddaughters, my father, my stepmother, my sister and brothers, brother-in-laws, sister-in-law, nieces, nephews and a great group of friends, my outlook may not have been so bright. However, I feel better now than I have in years. I am hoping after this round of treatment, I will be finished and will just continue to get regular checkups and cat scans showing no signs of the cancer. Though this is not a journey most people would want to take, it has changed my life. I am thankful everyday that I awake for having another day with my family and friends and I am thankful again at night for the wonderful day I have had. For to me, everyday is a gift. Make the most of them.

Colleen N., Bloomington, IL 1/10/08

At age 49 I got the news that brought me to my knees. I had stage IV pancreatic cancer and I had three months to live, four months if I took the chemo treatments, but my quality of life would be very poor due to the harshness of the treatments. Naturally, I got mad as heck, why me? I don't drink, smoke or even use caffeine. I had never been sick other than the flu and I was in great shape physically. This can't be happening!

For those of you that got this same message, I assume that you had the same reaction: fear, disbelief, why me and ANGER. I think it is normal to feel that way.

I went home to die feeling very sorry for myself. After a couple of days I began to think straight again and it came to me. I never quit anything in my life, I am stubborn to a fault and I owe it to my wife and two little boys to fight this thing that I have. I will not go without a fight if only to show my kids that you can't give up when the going gets tough.

I started a chemo routine. Every other week on Thursday I had Gemzar and Fridays I had oxaliplatin. I felt terrible for a couple of days but I was back at work on Mondays and did not miss a day other than my chemo days.

To make a long story short, I had great results from the treatment. After 48 rounds my tumor had been reduced from 12cm to 2cm, and has been stable for 10 months.

I have a message that I want to deliver to those of you getting ready to start treatment.

1. It takes a lot of energy to be mad, being mad that you have cancer is like being mad at the weather, it does you no good. Take the energy that you waste being mad and put it towards beating the enemy (cancer). You will need every ounce of energy you have, don't waste it.

2. Remember how lucky you really are. If it was one of my children or my wife that was stricken with cancer, I would be on my hands and knees begging to please let it be me, not them. Well, it is me, so my prayers have already been answered.

3. Don't give up...

Blair J., Matthews, NC 12/17/07

My husband, Ralph, after many tests which indicated no sign of cancer of the pancreas, was finally diagnosed in October of 2006. He was given 6-9 months to live if the cancerous tumor could not be shrunk. And we were given little encouragement. However, after almost 6 weeks of chemotherapy and radiation at a cancer center in our hometown of Shreveport, the tumor was shrunk by about 70%. He was then a good candidate for the Whipple. On February 5 of 2007, he underwent an 8 hour surgery by a brilliant and highly dedicated pancreatic and liver transplant surgeon. Ralph's recovery was difficult but he fared better than most, especially considering his then age of 67. I am happy to report that he is in great shape. He lost a lot of weight but is now a trim 157 pounds and has been getting on our roof these past few months to clean out the gutters. His quality of life is better than it was a year ago. He does not digest fats...they go right through him. But, he has no pain and we think this is a miracle.

Charlene B., Shreveport, LA 12/1/07

In March of 2002, having been widowed only a year before, after caring for my very ill husband for seven years, I began feeling very ill. My first symptom was extreme itching on my torso. I was sure that after seven years of caring for Pete, my house was probably not as clean as it should be; therefore, I imagined that there might be fleas in the house from my tiny Pomeranian. Well, I got some powerful flea bombs and let them do their work in the house while both the dog and I spent the night in a motel. We came home hoping to have a restful night....not so. I itched even more. Then, I decided that there must be dust mites in my home. I hadn't had the carpets and upholstery cleaned in a few years since I was so overwhelmed with other matters. I ordered some very expensive dust mite cures online, proceeded to apply them, spent another night in a motel, and came home to the very same problem.

At this time I was teaching part-time in the International American Language Center in our local university. I began desperately spraying my stomach area with cortisone spray....I couldn't make it through an entire class without some relief, so I would dash across the hall to the bathroom to spray about every fifteen minutes. My students, I am sure, thought I was absolutely crazy!!

Then, about two months later, I had black urine and a white stool, a symptom of jaundice. My physician, a dear friend who had cared for Pete lovingly during his last years, said I was jaundiced and that we would test until we found out why. I was one of the lucky ones whose tumor blocked a bile duct; otherwise, pancreatic cancer is usually a silent killer. Within forty-eight hours after having a stent implanted in my gall bladder, my liver enzymes had improved greatly. My physician made arrangements to go to an institution where two physicians were conducting a study of pancreatic cancer and trying very hard to improve the possibility of life after the Whipple. In my estimation, these two doctors are as close to God as a human being can get. They are dedicated, very much involved, and highly skilled. I know that I would not be alive today were it not for their efforts. They and their staff members were available any time 24-7 after I returned to my son's home in Seattle. At the slightest notion of a problem, I was placed back in the hospital under their care immediately.

Something that truly impressed me about the hospital's staff was that everyone, from the custodian to the surgeons, was always on task. After seven years of chasing ambulances and lifebirds during my husband's illness, I was prepared for the worst. I was always having to get downright obnoxious in order to get the proper care for him. Not so, at this hospital. They were wonderful.

I recently had my five-year checkup and am still cancer-free. An additional reward during that week was that I became a grandmother for the first time. What a week that was!!!!

Over the internet and by telephone, I have mentored several people in the area who have had pancreatic cancer. I must tell you that my survival has been the most humbling of experiences. I take such pleasure in a sunrise, a sunset, rise to greet the day with a smile, and treasure the minutes, hours, and days of my life.

Patsy R., Clarkston, WA 11/19/07

My sister was diagnosed with pancreatitis in October of 2006 which in December was upgraded to an inoperable pancreatic tumor. She did not share with us the "sentence" her doctor gave her. All I do know is it was BAD! BUT, I refuse to believe that there is "no hope" and neither does she. She went to a hospital hoping they could help; they were useless and like many other doctors told her to go home and die. Well, we prayed with the faith of a mustard seed and my sister found another institution which, by the way, the doctor at the first hospital rolled his eyes and said he did not put much stock in.

First off, NEVER think you can have too much faith. We are wonderfully made. We have incredible healing powers. My sister's cancer marker, which was at 4,000, has steadily dropped and is now at 50 with no signs of any spreading. It is a year now and she is looking great. This is not to say it has not been rough and incredibly emotional. At her institution, they treated her holistically, mind, body and spirit. She had three types of chemo. The support there is incredible!

Do not allow the doctors to make you believe you have no options, because you do. My sister totally changed her lifestyle and eating habits. She eats raw foods and juices, cutting out sugars and refined foods, and no smoking or drinking. These things have to lose their importance to you. And it is so important to believe, believe you can and you will be healed. False hope is an oxymoron, there is no such thing. You have hope or you do not. Please, have hope!

Valerie N., Fair Play, CA 11/4/07

I am glad to tell you that I am a 16 year cancer survivor. I was diagnosed with periampullary adenocarcinoma when I was 41. I had a 6 hour Whipple procedure in May 1991 in a hospital in Kalamazoo, MI. My symptoms were itchy skin, yellow-colored eyes and fever. The operative findings were a large 3 centimeter mushroom-shaped mass in the Ampulla of Vater. There was no evidence of any known metastases. I stayed in the hospital for 11 days and was discharged under the care of my sister who is an R.N. with critical care experience. By the way, I had no chemotherapy or radiation. I am a type II diabetic and had my gall bladder removed.

I am now 58 years old. I'd like to share my story to other survivors. Faith and family support are very important.

My advice is get medical attention once you experience pain in your body. I am alive, enjoying life with my family in the Philippines, and I am sharing my story.

Lydia Y., Las Pinas City, Philippines 11/1/07

Reading the stories of courage and determination has given me and my family hope during our whirlwind with this disease. I am writing about my Father who had no symptoms but had had a fever and a fainting spell while visiting the doctor. They attributed the fainting spell to his fever. He was admitted to the hospital because there was a protein test that was performed that seemed, as the doctor said, "peculiar". Amazingly enough, the doctors didn't give up on trying to figure out what was going on. Over a period of 5 days in the hospital my dad was visited by over 30 different physicians from Infectious Disease to Oncologists. It was while performing a CT scan of his lungs to check for a blood clot (which runs in his family) they saw a mass on his pancreas.

Cancer wasn't what we were thinking was going on. He had a follow up scan, and then an endoscopy biopsy which confirmed his diagnosis. He had a distal pancreatectomy removing the body and tail of his pancreas, all lymph nodes around the pancreas, and the spleen. He does have metastases to the liver. He is one of the lucky ones, for getting to have surgery and healing pretty quickly. He did have one set back just a few weeks ago, where he developed a "leak" where pancreatic fluid had built up and he had to have that drained and was hospitalized for a few days. He has lost almost 60 pounds and continues to lose a pound here and there. He is eating well but doesn't seem to be maintaining his weight very well. We continue to remain very optimistic.

It is amazing how something so devastating can bring so much good to a family. We are closer now than we have been in years. My dad's famous words, since hearing of his diagnosis and talking with people on the cancer floor at the hospital, have been "It could always be worse". I am so thankful that we still have him and that he continues to face each day with such an amazing attitude.

I admire each and every patient, caregiver, daughter, son, and friend that is living with this disease. Keep on fighting, keep on raising your voice, and most importantly, Keep On Living!!

Shelley G., Des Moines, IA 10/29/07

I was inspired to tell my story after reading a story from another advanced stage patient. She was dismayed that so few survivor stories were written by stage IV patients. Like her, I also looked for similar stories when I was first diagnosed 17 months ago. In the spring of 2006, at age 50, I was sent by my primary care physician for a CT scan after complaining of abdominal pain which he suspected was due to a kidney stone. Within days I began experiencing very typical obstructive jaundice systems -- dark urine, severe itching and yellowing of the eyes. Everything happened very quickly. I had a CT scan within a day or two of speaking with my doctor. I went in for the scan in the late afternoon and my doctor had the results the next morning. He called and had me schedule an MRI and come in for blood work. Again, results were back the next day. Within one week, I went from a very healthy, active woman to having a confirmation of stage IV pancreatic cancer through a liver biopsy. I was admitted to the hospital due to the jaundice and to have an ERCP to place a stent in my biliary duct and to do the liver biopsy. I am fortunate to be in Chicago with access to a world-class medical center.

After almost one and a half years of Gemzar (gemcitabine) chemotherapy, I am feeling very good and my tumors in both my pancreas and liver have shrunk. I remain quite active and often travel to visit family and friends. I feel that each day is a blessing. My husband, family, friends and medical team have all been a source of tremendous support.

Nancy T., Chicago, IL 9/19/07

Devastating.

One word to describe the overwhelming realization that PanCAN's Survivor and Caregiver Network did not contain any volunteers who had metastases in all the same locations as I.  I spent hours reading and rereading the inspirational stories for someone with a similar story. I checked daily, hoping to find that one person. I was, however, thrilled to talk to two incredible stage IV survivors in the Survivor and Caregiver Network and maintained the hope that I would one day be able to serve a resource for others.

Partial Remission.

Two words to describe my current status after eight months of treatment. The tumors, once ‘too numerous to count,' are retreating. My liver and lymph nodes, clean. The tumors on my lungs and pancreas, shrinking. I allow myself to take comfort in this victory, knowing and understanding how fortunate I am to be alive.

Owning my Life.

Three words that describe me. I quickly realized it's not about ‘finding a balance' between my life and the tumors. It's about throwing everything I love, everything wonderful in life, at cancer. Recognizing my fear and anger, and still finding the strength within to seek out my dreams. Squeezing as much life as possible in between blood work, appointments, treatment, and scans. Trying to live, laugh and love more than lament.

I am strong. I am fighting. I am surviving.

Nine words that have kept me alive.

My story isn't about pancreatic cancer.  It's about living.

Kate T., Boyds, MD 8/31/07

Three weeks ago, I walked in a storm to the lumber store to get wood for an as-yet-not-built kitchen drawer divider. In the downpour, I passed an open suitcase filled with three inches of water and floating picture frames. I rescued two of those frames, which I washed and dried out. They are as good as new, both blue, one leather, the other wood. Two days later, a photograph arrived in the mail, which I put into the wood frame. It is a photo of a hotel staircase packed with thirty waving people. If you peruse it, you will see me towards the back. It is a gift from PanCAN, taken at this year's Pancreatic Cancer Symposium – New York. We are all survivors, of mixed ages, genders, races, and ethnicities. What we have in common is that we are all smiling.

It is, indeed, a good day.

Mary Rose D., Brooklyn , NY 8/14/07

I appreciate very much these examples of faith, hope and determination.

I am a seven year pancreatic survivor and want to add my own story of survivorship to these inspiring stories.

In a nutshell, I believe in using both Western Medicine and carefully selected Complementary and Alternative Medicine methods. I think tough diagnosis calls for openness to “out of the box thinking”. And I certainly believe that fighting makes a big difference in one's health. I also explore what makes a good oncologist and discuss why I needed to change oncologists very early in my treatment.

To Life!

Jerry A., Coralville , IA 7/22/07

I was diagnosed with Non-Functioning Islet Cell Carcinoma, a neuroendocrine tumor, in August of 2000. I underwent a Whipple operation but declined chemo or radiation. For 6 years I was tumor free, but I knew that this type of cancer was slow growing and I could expect it to show up again. In October of 2006, I was found to have multiple metastases in my liver, spine, right hip and abdomen. I went to a cancer center and saw a physician who is a neuroendocrine specialist. He recommended a brutal chemo regimen that might help a little, but would probably make me very sick. I came home and started very intense research on the internet which led me to PanCAN and from there I found another physician.

I went to see him and he immediately told me that he felt I was a good candidate for internal irradiation of neuroendocrine tumors with Yttrium-90-DOTATOC, a radiolabeled somatostatin analogue. Unfortunately, this treatment is only being done in Europe at this time. Here in the states, they are in the final clinical trials for final FDA approval. We chose to go to a University hospital in Switzerland not knowing if insurance would pay or not. Some do, some don't, but a lot more are with appeals. I underwent two treatments 8 weeks apart and now I am completely tumor free. I was amazed at how fast the tumors disappeared; I had no side effects, and feel great!! I read so many sad stories of people suffering from these types of tumors and they have never been offered this treatment. I just want to share that it is available and I understand it is not for everyone, but it saved my life. If I can help one other patient, then it is worth letting more people know about it.

Marcella O., Pensacola , FL 6/27/07

My husband and I were so happy because we had our first baby in October. In November our families were with us because they met the baby. They came from our country. We are not American and we are living alone in the United States. Those days, my husband didn't feel ok, his skin was turning yellow and his urine was dark. We went to the ER, he got a CT scan and they found a mass in his pancreas. It was terrible; he is 32 years old and we had a three week old baby.

His surgery was on December 6, they took the tumor. The margins were clear but of 23 lymph nodes, 5 were positive. My husband had two cycles of chemo with Gemzar and 5-FU. And he finished his chemoradiation 3 weeks ago. The first CT scan was fine and the next is on June 18th. We hope that it will be ok.

I want to share my husband's story because I want to help people who have the same illness. It is so hard to face cancer, but don't believe in numbers, all people are different.

We are young people and our baby is 8 months old now. This disease does not care about age, but we must keep strong and fight against cancer.

I am strong to support my husband and take care of my baby. I had never believed that I could be so strong, but I have received many things from this terrible situation in my life. We can never lose the HOPE.

Mora L., Philadelphia , PA 6/5/07

I was diagnosed with pancreatic cancer in November 2005 after having bouts of diarrhea and stomach cramping that had come and gone for about 6 weeks. It was a Thursday when I went to the doctor the first time. He gave me some prescription antacids; I called on Tuesday saying they didn't work. I had an ultrasound on Wednesday evening and was told, on Friday, that my pancreas and spleen were enlarged and I had to have a CAT scan and blood work done. I had that done on Monday and Wednesday evening I was in his office and he gave me the diagnosis of pancreatic cancer.

I went to a cancer center and contacted a local oncologist. I had the biopsy done the day before Thanksgiving. My mom flew in and helped for the next couple of weeks. I was told that the cancer was inoperable due to involvement with the superior mesenteric artery and to try chemo and radiation. So I started Xeloda and cisplatin. When that ended I was put on Tarceva and returned to the cancer center. I was told that it was still inoperable and after prodding about what that meant the doctor said "You have a month to a year." That was a year ago March. My Dad, who lives locally, had gone to the cancer center with me and we both cried. When we stopped I called my oncologist. She is the most wonderful caring woman and also very knowledgeable. We went to her office and she said she had just seen something from a surgeon at another institution looking for pancreatic cancer patients with unresectable tumors.

So off I went to that institution. There I was told again the artery entanglement precluded me from surgery. My oncologist and my new surgeon talked and decided that we would start on Gemzar and Tarceva. At the end of May I went for more tests. I was bloated and the thought was that it had spread. They performed a laparoscopy to see what was going on and came back and said they could now do surgery.

On June 15, 2006 I had surgery. It was a new surgery, not the traditional Whipple. I was on the table for 11.5 hours. I lost my spleen, a vein from my neck was relocated to replace a piece of a vein that was involved, and the tail of my pancreas was removed. I was at the hospital for another 3 and a half weeks recovering.

They did finally let me out when I said I was going to walk a mile up the road with my IV pole to my friend's wedding. I did manage to dance to several of my favorite songs at her wedding, the day after being released from the hospital. Of course she had hired our favorite local band to play, so what could I do?

I was in and out of the hospital over the next month and a half. My port got infected (another week stay). I reacted to the antibiotics (another week). Once I was better from all the reactions, I felt good. I was back to work the last week of August.

My CAT and PET scans came back clear in October/ November. Then, in January 2007, two spots were found on my liver. According to my oncologist, a local community radiologist would have never found them. Thank goodness for my cancer center.

I am now in my second round of immunotherapy treatments as part of a phase II clinical trial. The spots have not grown since I started the trial, so that is good. I continue to have treatments once every three weeks and have two more to go. Then they will have to determine what to do next if the spots aren't gone (that's the hope with this trial). The nice thing about the immunotherapy is that it does not affect me at all, I feel normal and healthy.

Pam W., Germantown , MD 5/28/07

My journey began on April 24, 2006. I had been having an intermittent, annoying pain on my left side that I thought resulted from exercising (pulled muscle) and also some Popeye's fried chicken (which I don't normally eat). The combination of the two caused quite a bit of pain one evening. I called my doctor and he suggested I go to the emergency room. After extensive testing, I was told that I had a "suspicious lesion" on my pancreas and I should see a surgeon after release from the hospital.

Being very naive about what a "suspicious lesion on the pancreas" really meant, I went home and spent the day on the internet. Overwhelmed by my findings, but determined not to let it "get me", I immediately interviewed several surgeons. I had the Whipple surgery on May 6, 2006 and was released 6 days later from the hospital on May 12th, just in time for Mother's Day. The 2.5 cm tumor was removed, there were no metastases, and my lymph nodes were all clear (stage I pancreatic cancer).

After surgery, chemo and radiation, I returned to work after approximately 4 months. I had a very stressful job as a director of human resources, and my husband felt it best for my complete and continued recovery that I resign in April 2007. Shortly after returning home from a lovely vacation to the Dominican Republic , on February 28, 2007, I was taken to the emergency room. I had emergency surgery the next morning to remove part of the small intestine that had become ischemic due to scar tissue and/or radiation from the first surgery. That was my last day on the job where I'd worked for 27years. I now have SBS (short bowel syndrome) and am home healing, adjusting to my, prayerfully, temporary need for TPN (nutritional supplement), and staying tuned for what is planned for me on the next leg of this wonderful journey called life. I remain cancer free.

Two major surgeries in less than 1 year! There is so much good news that I could share with you that has occurred on this journey that I truly don't stop (very often) to think about the not so good news. Sitting here telling my story is such a blessing and a gift. I've also had the blessing of two beautiful grandchildren born in the past year (both 2 months premature but doing well). One was born a few days before my first surgery and the other one a few days after my second surgery. In addition to my faith, I give special thanks to my incredible husband (married 9/04), my ever praying mother and step-father, my faithful children, my church family, my incredible co-workers, and a host of other friends and family. I had people all over the world praying for me and for that I give THANKS! A very special thanks to a friend who I met recently through a coworker who knew that we were both on the same journey. Her spirit is incredible and it has helped to keep me going. We've never met in person but we plan to have lunch real soon.

There are so many incredible stories of faith within my story about my pancreatic cancer journey that I'd need to write a book to fully capture all of the blessings of the past 12 months of my life. Please, if you're on this journey, stay positive and stay faithful!

Debbi V., Silver Spring , MD 5/3/07

My name is Bill. I am 25 years old and I have pancreatic cancer. Not only do I have it, I have a rare kind of tumor, IPMN. The chance of me getting this based on my age and background is .001%.

This all started when I was having some really bad heartburn and my stomach would feel like a washing machine. I went to the clinic to have an ultrasound done. The test came back showing a mass on my pancreas no bigger than a dime. A blood test also showed raised liver numbers that would rival someone with Hepatitis C or Liver Disease. Over the course of the first 6 months of 2006, I would have 3 biopsies and too many blood tests to remember. Each biopsy would come back showing it as non-cancerous, which later on would not be the case. During this period of time, I would become a diabetic and lose over 40 pounds to go from 170 to around 135-130. I was a walking zombie and knew there was something the doctors weren't finding.

In July of 2006, I was able to speak with a case worker at a cancer center about my situation. After this, this cancer center became one of the reasons I'm still here today. I first saw a gastroenterologist who had an EUS biopsy done which showed a blockage in my bile duct, but again the test showed up negative for cancer. My doctors weren't convinced about this because my CA 19-9 was abnormal. I was then referred to the head of the GI unit and head of pancreatic oncology. I will forever say that this man saved my life. He told me that I would need to have a Whipple operation done and that I would go through a round of tests a week before the surgery. One test they give you is a PET scan which shows cancer in your body. Well, in my scan, it showed that there indeed was something showing up as cancer and he wouldn't know the damage until the surgery.

August 23rd, 2006 at 6:30am, I was brought into the operating room for what, on average, is a 6-8 hour operation. When I was opened up they found that the tumor was directly on top of a major blood vessel that if cut would cause me to die from blood loss. The surgeon would later tell my parents it was like "cutting hard concrete off wet tissue paper". My operation would last 13 1/2 hours. After I woke up from the surgery, I didn't sleep for the next 2 days straight. I felt helpless and alone. I was depressed because I felt that the life I had before would never be the same.

My hospital stay was longer than most after the surgery. Most stays are 7-10 days. I was there for 2 1/2 weeks. I was able to move around and walk around the hospital when I was up to it. Friends and family would visit me all the time and that made things a lot easier to deal with. When I read about this cancer online and learned everything I could about it, I found statistics. I keep those numbers in the back of my head to know that they only numbers, not a death sentence.

My stomach didn't wake up from the surgery until 2 weeks later. That would be my first real meal in 2 weeks. I will remember it forever, roast beef with mashed potatoes and mixed veggies. Oh, and I almost forgot, chocolate cake. I can say that was some of the best food I ever had. I didn't finish it all, not even half, but just the fact that I was able to eat solid food again made me feel like I was normal again.

I left the hospital on September 9th in a wheelchair with a drainage tube and a feeding tube weighing 125 pounds. My staples were gone, hospital stay done. Ahead of me would be the biggest challenge I would ever face in my life, chemo and radiation. A lead oncologist specializing in pancreatic cancer treatment put me on what they called "an aggressive treatment plan". This would include 3 stages of treatment. The first would be 3 treatments of Gemzar and a week off. The second stage would be 28 radiation treatments along with wearing a pump with 5-FU for 5 days a week for 5 1/2 weeks. The third stage was 9 treatments of Gemzar with the treatment broken up into 3 weeks on and 1 week off.

The first 3 treatments weren't that bad. I had nausea but not the vomiting I expected. I did not lose any weight during this time. I had a week off but then started my radiation treatment with chemo. This period of time was the worst for me. Between the treatments and sleeping while Ensure was being pumped into me, the nausea and vomiting was terrible and violent.  The one thing that helped me through this period and my entire treatment period was smoking medical marijuana.  My doctors agreed that this and the vitamins I was taking were helping with my nausea as well as with putting weight on.

I was given a 13 day break after the second stage which I took full advantage of, going out and hanging out with my friends for the first time in months. The third stage of treatment was very hard because the nausea and vomiting increased, but yet I was still able to keep on the weight because of the vitamins and medical marijuana.

My last treatment was on Feb. 23rd and since then I've had 3 blood tests and PET/CT scans. All were normal, my scans were clear and my cancer makers are in the single digits. I am also 160 pounds and, other than the scars from the surgery, you wouldn't know that I ever had cancer. I am thankful everyday that I am alive because a year ago at this time, I thought I'd be gone and not able to tell you my story. Not a day goes by that I don't think about everything I went through, but it has matured me and turned me into a better person. I know now that when you have a wall in front of you, you go through it and get to the other side. With cancer, any cancer, there is only one way to get to the other side of the wall and that's to hit it with everything you have to break that wall down.

I hope that my story helps someone get through having cancer or someone helping someone who has cancer to let them know that you can beat this. I am living proof of it.

Bill H., Palm Harbor , FL 4/30/07

I was diagnosed in September 2007 with pancreatic cancer, a combination of adenocarcinoma and squamous carcinoma. It started as a sharp pain in my solar plexus. I thought it was acid reflux. With the persistence of my wife, I went to my doctor after having dark urine and clay colored stools. After two weekends in the hospital they finally performed a biopsy with brushings. The results came back highly suspicious of adenocarcinoma. My heart stopped. I had an idea of that the first night in the ER when the attending came in and told me there was a mass on my pancreas. They didn't want to call it cancer. They all said I was too young and it was most likely gallstones. Whatever. I knew.

My wife was two months pregnant, I had just bought a house, and had just gotten my pool table. All my dreams had come true. How could it all fall apart now?

The tumor was one centimeter at diagnosis and had gone to two and a half later on. I began Xeloda and radiation therapy that October to prepare myself for the Whipple procedure. Those months between September and January were what they were, waiting to see if I would be operable, not knowing whether or not it would spread. When I got the pre-op test results, my wife and I were speechless. They said that they really couldn't find anything to speak of. What a miracle. Surgery was a week later on January 10th. Pathology found that the margins were negative and 7 of 7 lymph nodes were negative. I began chemotherapy two months later as good measure. The ride is still rolling. I pray to keep us all safe and healthy. So far so good.

I hope this gives somebody hope. This can be beat. YOU MUST HAVE FAITH!!! I would not be here now with out the prayers of all who cared about me. Right now I am cancer free and hope and pray that it stays that way.

Brad D., Garner, NC 4/27/07

My husband was diagnosed with pancreatic cancer last July. He was feeling great and had no symptoms until one day when he called me and said his urine was a gold color. The next day he became nauseous and started to turn yellow. He immediately went to his doctor who did blood tests and a CT Scan and referred us to a gastroenterologist. He then had an EUS done and all of the tests were negative. Finally, he had an ERCP and that showed a suspicious spot.

The following Monday he had a Whipple procedure done. A two centimeter tumor was found with no signs of spreading. We were devastated with the news but thankful that it was caught early. After surgery he had five weeks of 5-FU and radiation therapy. After that he had six months of Gemzar. He just finished his last treatment. The CT Scans and PET Scans have been negative. The only problem he has is scar tissue pain that comes and goes.

We are so hopeful that since the disease was found so early he will be ok, but I don't think we will ever be able to not worry. We try to stay positive and now that the chemo is over we hope to start doing the things we used to enjoy. The stories that I have read here have given us hope. Good luck to all of you who are going through this. It is not easy but you need to be strong and have the will to keep going!!!

Nancy , Delray Beach , FL 4/23/07

It made me feel so good to read all these survival stories. I mostly hear pancreatic cancer stories with bad outcomes. It makes me wonder, am I the only survivor? Why me? Just as I wondered fourteen years ago when I was diagnosed.

I am now leading a very full and healthy life and thank God every day. The best three words I ever heard were NED (NO EVIDENCE OF DISEASE) and I hope and pray it stays this way for a long, long time. My battle began when I was forty years old and my only child was three years old. I prayed to be alive for her sweet sixteen and she hit sixteen this year! I'm not going say it was easy, it was a long and hard battle, but the outcome turned out better than anyone expected.

I went through three years of very heavy chemo. My tumor was on the head of my pancreas and inoperable. The surgeon bypassed my pancreas and stomach and that was all he could do. Then my wonderful oncologist put me on heavy doses of 5-FU and cisplatin. I was in the hospital once a month for six months, being pumped up with chemo for a week at a time. I tolerated it pretty well. Then, after that regimen I had radiation for six weeks and then more chemo, this time with a home pump that I wore around my waist. It was hard, but I got through it with a very strong support system and wonderful doctors. Just hearing my radiation oncologist saying that "we're going for a cure" made me feel so hopeful. It's amazing how a few words can make you feel so good and hopeful. It is important to realize this, what one very important doctor said to me, "Everyone is different. Don't listen to statistics."

This is so very true!! I knock on wood as I write this. I will celebrate my 55th birthday this year and am a very happy person. This experience has humbled me. I have no time or patience for unnecessary things and I enjoy every day and live it like it's my last.

L. L., Upper Saddle River , NJ 4/16/07

I read these stories when my dad was first diagnosed and they gave enough hope to make it through. Dad started by having pains in his midsection, jaundice, and loose stools. He'd lost over twenty pounds before even going to the doctor. Dad always went to his six month check-ups. At first, the doctor thought it could be hepatitis, but a month later decided to go in and scope it out. He thought it would just be a blockage. As it turned out, May 13, 2006, Dad was diagnosed with pancreatic cancer.

The doctor that day looked heartbroken. He told Mom to find a good doctor that performs the Whipple. Mom also asked what she could do and he said "Start praying." Needless to say, Dad probably had half a nation praying for him.

Dad decided to have his surgery done; it took place on June 22, 2006. After eight hours, the doctor came out and informed us that the surgery couldn't be completed. The tumor was wrapped around the blood vessel and he would've bled to death if he tried to remove it. All I heard was he couldn't remove the cancer and that Dad basically had a year to live. I already had done a lot of research and knew the rest of what he had to say (plus I had lost my husband's grandma to pancreatic cancer). So, I walked away.

I won't lie and say the surgery was easy. Dad had a hard recovery. He came home after two weeks and ended right back in the hospital after five days. He was hiccupping so bad that he couldn't catch his breath. The doctors noticed his incision was infected, so they opened him back up. They also told us that he couldn't have chemo or radiation until he healed.

We were devastated. We thought that the cancer would be all over his body by the time they could even do chemo. We thought it would be too late. My brother asked the doctor if he was just sending dad home to die. He told us that he was not, but that his intention was to get Dad out of the hospital as soon as possible because he didn't have enough time left to waste in the hospital.

It was a rough summer, mentally and physically, for Dad. He got down to 150 pounds, had a bed sore on his tailbone, and the open incision. But, everything healed up by November. All the scans showed that Dad's tumor was still the same size and hadn't spread. That was a miracle in itself. Dad went through all of his chemo and radiation without any side effects. He now weighs around 186 to 190. He eats whatever he wants and he eats a lot.

It is now April 11, 2007 and as I'm writing this we are waiting for the doctor to call and to give the results of his latest scan to see what the radiation and chemo have done. Regardless, here we are almost a year later and my Dad is still here. You would never know that he has cancer and has just finished five and a half weeks of chemo and radiation. No matter what, there is always hope!

My Dad asked me one time if the doctor gave him a time limit. I answered truthfully but told him that to them he's only a statistic. Nobody can put a limit on your life. Anybody can die at any time and not from a disease.

The whole time we've been going through this Dad never kept us out of anything. We were there for everything and he wasn't afraid to ask for help. I wish the best of luck to everyone. I know it isn't easy for everyone involved but it seems we're starting to hear of more and more pancreatic survivors. And to just hear of one survivor gives so much hope.

Elizabeth , Barberton , OH 4/11/07

I am writing this entry based on my father's story. I hope it will bring a source of hope and inspiration to anyone who is affected by or connected to this cancer.

My father was diagnosed with pancreatic cancer in May of 2006. At the time, he went in for testing because his skin was turning yellow. My father came to find out that he had a tumor on the head of his pancreas and it was blocking his bile duct which was causing the skin discoloration. It was later determined that the tumor was cancerous.

My father then had more testing done and we were told he had a localized cancer. He seemed to be a good candidate for the Whipple procedure. My family thought we had caught a break.

However, the surgery did not go as planned. After starting the surgery they realized that his pancreatic cancer had spread to his liver so the surgery could not be completed. This was devastating news to my family. We were told that my father should start planning his life by months instead of years. We found this to be unacceptable so we started researching to see what was out there. This is when we found the PanCAN website. This website gave us the hope that we needed to get through this trying time.

After healing from the surgery, my father starting taking Gemzar and Tarceva. The combination of the two chemotherapies worked really well. My father's CA-19-9 count started at close to 5000 and has now dropped to around 110. He recently had a PET scan done and the results showed that his liver spots are gone. We are ecstatic. My father has been strong through this whole ordeal and has maintained his daily activities. He is still working full time. This goes to show what a strong will and a lot of faith can do. My father is still fighting this cancer, but I am confident that there will be a breakthrough coming soon that will change the cancer diagnosis for everyone. Remember if you are just starting through this process that there is hope and never give up.

Bridget F., Marlton , NJ 4/3/07

After reading all of the uplifting stories I feel that it is about time I write the story about my dad. Our journey began April 10, 2006. My parents came to help me watch my two boys while I had a minor operation. Dad brought me and told me that he lost about thirty pounds (originally we thought it was because he was no longer working third shift) and was now having some greasy orange stools. We urged him to go to the doctor. Later that day my mom called and made an appointment and off he went. After a few tests and his doctor being away on vacation for ten days, I began to get restless. I just happened to run into my parents at the mall and under those lights dad looked orange. I got more upset when my mom told me he looked orange in the daylight, too. That was it. I called the covering doctor and asked him to read the tests. Sure enough, the next morning he called and told my parents to go to the hospital.

Just to let you know, he felt physically fine. In fact, my mom had to call my dad home from work. He was less than pleased because he was actually having breakfast with the guys. He called me upset but went to the hospital. When we arrived, he told me about the cancer. My husband and my mom stood back letting me and dad and handle the situation. I was so upset but I acted strong somehow. We walked hand and hand to the elevator. I had done some research and based on his symptoms it seemed to me we were about to hear "pancreatic cancer". Sure enough, it was. He stayed in the hospital until the insurance company told him to leave and do the tests as an outpatient. This was also frustrating.

He went back and was scheduled for surgery on May 1st. The irony is that we had a 60th surprise party planned for him on the 6th of May. He was in the hospital for ten days. He needed to have a minor operation before he left to tie a suture in his abdomen. Because it was leaking too much fluid, he actually had a colostomy bag while in the hospital along with the Jackson Pratt drains.

Yes, he was one of the lucky ones. He had a Whipple Procedure. During the surgery he also had to have his right kidney removed due to cancer. He had an awesome surgeon. His CA-19-9 markers were never that high, 230 before the Whipple and thirty after. He underwent tomotherapy in New York and 5-FU chemotherapy for eight weeks. He was ill but was still ok. Then he had a three week break and we all went on a mini-vacation. Dad felt great. We walked all over PA, Dad kept up, a little tired and frustrated by his newly acquired diabetes (due to the surgery), but we had a great time.

Dad is now almost an eleven month survivor. He went on to have 9-12 Gemzar treatments before he could no longer tolerate them. The ride has been bumpy. He was sleeping for eighteen hours a day while on Gemzar. He was given anti-nausea drugs with sugar which messed him up for a while. He was back in the hospital over Christmas 2006 with a blood clot. He is on all kinds of meds. He does have to go back and have some polyps removed, but his marker was down to nine this past round of blood work. How great!

Dad started this disease at an unhealthy 248 pounds and he went down as low as 159. He is back up to 190 due to the thirty pounds of water he is carrying around but he is with us! He is able to eat again and with the help of Pangestyme he can even have a steak now and again. He is finally becoming active too. He plays his guitar for us, sings, and paints and cuts wood again, all the things he loves to do. So yes, the road might get bumpy, but his faith is carrying him through. He is an inspiration to so many. Even when he doesn't feel well, you'd never know. Last year at this time I didn't think he would be with us through the holidays. Here he is coming up on his one year survival. Even when things look so bad, keep the faith...it helps!

Karen, Lake Hiawatha , NJ 3/22/07

I'm very new. I was only diagnosed six weeks ago and had my first chemotherapy treatment only three days ago. But, I wanted to let anyone new to this website know that these stories have given me faith and hope that I couldn't find in myself when I got the diagnosis. The anxiety I put myself through before the first treatment was unbelievable. I went to get my first chemo and was greeted by a wonderful nursing staff and other patients that knew exactly where I was with that "deer in the headlights look". They talked to me and my husband right off and the next few hours flew by like I could have never imagined. I know I am only starting but the welcoming care and support I received was beyond what I ever could have expected. I'm in here for the long haul with faith, friends, family and people like you. I have found a type of calm I didn't think was possible at this stage. Thank you all for the courageous battles and wonderful inspiration you give others when it is so greatly needed.

Mary F., Anaconda, MT 3/22/07

I have some unbelievably good news. On August 22, 2006, I was diagnosed with pancreatic cancer and given 3-9 months. Within two weeks I was on standard chemoradiation plus an experimental gene therapy called TNF-alpha. On December 13, 2006, my oncologist advised me that my recent PET scan revealed a shrinkage of the tumor but now I had two new malignancies on my liver. I began another run of chemotherapy in January.

The newest results are in from another PET scan. I learned on that I am now in complete remission. There is now no sign of malignancy.

My oncologist is amazed by this success but will have me continue on some chemotherapy to fight any loose cells wandering about in my body.

The last chemo treatments were complemented by a daily, oral tumor inhibitor called Tarceva. In addition, I drank a botanical juice called Mangosteen named "Xango" and took capsules of "NAC" (n-acetyl-l-cysteine).

As absolutely no one expected this kind of result in only nine weeks, I must also include an important protocol as a daily dose of prayer - from all over the country (and beyond) which has been a major influence in my present health.

Dick B., Kingwood, TX 3/22/07

I would like to bring my message of hope to everyone. Above all, we are not alone, as I found out early on when my wife contacted PanCAN on Valentines Day 2005. Soon, a gentleman, whom I affectionately call my "sponsor", and I were sharing experiences over the phone. They were experiences that could only be understood one survivor to another.

After nine months of phone conversations, I finally met this wonderful man at the Pancreatic Cancer Symposium - Los Angeles in November 2005. The Symposium brought my wife Mariann and I so much hope. We were struck with the message of creating awareness. The diligent work being done by the researchers was inspiring, however we came away knowing there is more to be done.

My journey started in the summer of 2004 as an annoying pain in my back. I thought I had pulled a muscle but the pain began radiating under my ribs. Excruciating, debilitating pancreatitis was my diagnosis. In the hospital, my treatment was starvation and a sonogram revealed a gallstone. My gallbladder was removed. The week of Thanksgiving, I had pancreatitis again. More starving and total weight loss of 30 pounds. A CT scan revealed a shadow on the tail of my pancreas. The doctor's suggestion was, "Wait six months, do another CT scan and let the pancreatitis clear up."

My wife was not convinced that waiting was the right thing to do. I'd like to express my gratitude and love for my wife, my advocate, as I was too sick to manage my own health care. She found experts at a hospital in New York City , 2 hours from our home.

The first week of December 2004, I met a phenomenal gastroenterologist at the hospital who performed an EUS. Although the biopsy was inconclusive, he suggested surgery as it "looked suspicious." I later learned that his ability to visualize my tumor through his experience with EUS techniques would prove to be one of the most defining factors for me obtaining an operation.

A brilliant surgeon at the hospital agreed. I had a distal pancreatectomy and splenectomy in January 2005. Lymph nodes and surgical margins were clear in surgery. The surgeon told my wife, "It appears to be acute pancreatitis; however, we must wait for the pathology report." Relieved, we went home.

One week post-op my pathology report came back ductal adenocarcinoma invading the splenic vein. That very day I suffered a total of three strokes from a clot which shattered in the front of my brain. Fortunately, there were no lasting effects.

My oncologist at the hospital was honest with us about pancreatic cancer research data, that there were different schools of thought regarding radiation, combination chemotherapy, etc. However, not once did she ever say, "There is no hope, Ralph." Instead she said, "Let's go for the cure."

We decided to be aggressive and do GTX which was developed at this hospital along with radiation. Our brother-in-law Jim, who had retired to South Carolina , was going to come help me with the chemo. He passed away suddenly and we buried him the day before I was to start taking the Xeloda pills. My faith was visibly shaken and I was not emotionally ready to start. So at my oncologist's suggestion, we opted for six months of Gemzar and radiation.

My faith and hope were restored as I realized that my brother-in-law Jim and Jan (my wife's sister, who died from lung cancer eight years ago) would want us to fight, to get connected, to have a new purpose in life and to give back. We felt we needed to go to the Symposium in LA in 2005 to see first-hand how this all works, how to get more involved, and to see others with this disease smiling and living life in spite of it. We found all of that and more. Today I volunteer as a member of the PALS Survivor and Caregiver Network and give back what was freely given to me by my dear friend.

Thanks to PanCAN, my wife, and my great team of doctors, I am a two year plus survivor. I have no evidence of disease and I am filled with hope and gratitude.

Ralph Cheney, Monticello , NY 2/13/07

My husband was diagnosed on July 3, 2006 after a very brief bout with jaundice. I just had a gut feeling that it was due to pancreatic cancer so I kept pushing the doctors to see him and do more tests (they thought it was just gallstones). He had a Whipple on July 13, 2006 by a wonderful surgeon who had done 300 Whipples. His recovery was quick and everyone marveled at how well my husband healed. The tumor was 5 cm. and 3 lymph nodes were positive but there were no visible tumors on other organs. He entered a clinical trial and has been getting gemcitabine and Avastin. He also had 5 1/2 weeks of radiation and Xeloda. He is doing well, he is just tired and has loose bowels. There is just one treatment left and then comes the CAT scan and the CA 19-9. I have been an emotional wreck waiting for those tests (well, okay, I've been an emotional wreck since diagnosis) but after reading these stories I felt a lightness I have not experienced since July. I thank every person who has posted here for giving me HOPE.

Jacqueline, Philadelphia , PA 2/13/07

This is both sad news and an inspiration as well. My dad recently died of numerous health complications at age 87. That is the sad news. The good news is that in 1979 he was diagnosed with pancreatic cancer, he had the Whipple procedure, and survived for the past 27 years. He remained active throughout, until this year. He survived my mother who succumbed to Alzheimer's disease and at age 86 he remarried a woman who was also age 86. In his eulogy, our clergyman remarked that my dad was fortunate enough to have two great loves in his life. After his recovery in 1979, my dad had a zest for life that was unbelievable. He continued to work, travel and enjoy his children, grandchildren and great grandchildren. It was not always easy though, as we all know. Throughout the years dealing with diabetic complications was a constant challenge. But as I said, it took a lot more than that to slow my father down.

Hal G., Baltimore , MD , 2/9/07

I would like to share my story. I am a 27 year old female. I had just given birth to a 24 week old baby (extremely premature) in July of 2006. I then was diagnosed in September of 2006 with stage 4 pancreatic adenocarcinoma. I was very shocked because of my age and because I consider myself a healthy person. I have 3 very young children so I needed to start whatever they told me to. All I worry about are my children. I started chemo right away. We also decided to treat aggressively due to my age and healthiness. I have chemo on Monday of the first week of the cycle. It is a very strong treatment. Then I have 3 treatments on the second week. Then two weeks off and do it all over again. It's now January of 2007. I have had 4 cat scans and all have showed shrinkage except for this last one, it stayed the same. Good Luck to any one dealing with this.

Hope M., Grand Rapids , MI , 1/30/07

One of my best friends was told her pancreatic tumor was inoperable. After 4 months of gem/ox chemo, the surgeon was able to remove the entire tumor. She is undergoing preventive chemo and radiation at the moment. The doctors have said that her chances look very good. We celebrated her 63rd birthday last week.

Bertha V., Coral Gables, FL 12/19/06

I experienced a hard ring and pain around my umbilicus in the late summer and early fall of 2005. About mid-November I finally went to see a physician at my HMO walk-in clinic, who diagnosed the problem as an infection and prescribed antibiotics. The hardness and pain persisted after I finished the full course of antibiotics but I continued to ignore the situation until after the holidays. On January 5, 2006, I went to see my primary care physician, who decided that I should have an abdominal CT scan.

The CT scan and subsequent biopsy of my umbilicus and a 2.6 cm tumor on the neck of my pancreas resulted in a diagnosis of Stage IV pancreatic cancer. The CT scan also revealed two "worrisome spots" on my liver. I was devastated, but I have a lot of reasons to live, so I decided to do whatever it took to beat the cancer.

My network oncologist initially offered me palliative care, but after I consulted with an oncologist who specializes in pancreatic cancer, my network oncologist agreed to offer me the recommended treatment of two weeks of Gemzar, Taxotere, and Xeloda (GTX) followed by one week of rest. The network surgeon I consulted said the cancer was inoperable.

After four months of GTX my CA 19-9 dropped from 1680 to 41 and a PET scan failed to show any hot spots in my abdomen, including on the pancreas and liver. The surgeon agreed to schedule surgery on June 9, 2006, but said he would scope my abdomen first and if he found any evidence of metastasis, he would abort the surgery. When I woke up from the anesthesia, I was pleased to learn that he had removed the neck, body, and tail (about 80%) of the pancreas, but was able to leave the head intact. He also removed a dozen lymph nodes. A post surgical CA 19-9 came in at 19, well within the normal range, and the initial biopsy of the pancreatic tissue and lymph nodes that he removed failed to detect any cancer cells. A subsequent examination of the tissue revealed some "abnormal" cells in the pancreatic tissue and one of the lymph nodes.

At the recommendation of the oncologist who researched the GTX regimen, my oncologist put me on T-GX (Taxotere on weeks 1 and 3, Gemzar and Xeloda on weeks 2 and 4, followed by two weeks of rest) as the adjuvant chemotherapy treatment. I just finished five rounds of T-GX and am starting three months of Tarceva next week. My blood tumor marker has gradually crept up over the past five months, and the last reading (35.5), puts me at the top of the normal range. I'm hoping that the next test will show a drop in the CA 19-9, but if not, I will pursue a clinical trial as a possible option.

While I don't feel prepared to proclaim that I am cancer free, I am elated that I am still alive and functioning normally (I work out at a club every day). I can eat a normal diet and my weight is actually about five pounds above what it has been for most of my adult life. My wife and I just returned from a week long trip to Puerto Vallarta , Mexico , and we leave next week for our cabin in Oregon to enjoy the holidays with my son, daughter-in-law, and two granddaughters. My wife and I look forward to celebrating my 67th birthday in February and, if all goes well, to taking our granddaughters on a trip east in March. I feel very fortunate to have responded so well to GTX and to these opportunities to enjoy life with my wife and family. Regardless of what my next blood test reveals, I plan to do whatever I can to keep living and enjoying a normal life.

Don A., Santa Barbara, CA  12/19/06

Five months ago I passed the six-year mark since my Whipple surgery for pancreatic cancer, and I am healthy and clear of cancer at 74 years of age. I postponed writing my story for your web site until I could think of what lessons it has for others and for the care and identification of pancreatic cancer.

First of all, I want to say that, although I consider my case an unqualified success for my skillful surgeons and the oncologists who managed my chemoradiation and monitoring afterwards, there have been a few bumps along the road: a bleeding ulcer 17 months after surgery and some liver inflammation from time to time – both probably side effects of radiation. Yet on the whole my recovery was quick and complete, and I have spent periods of time living and working in Asia and Europe during the past six years.

We all know that pancreatic cancer is so lethal because it is so often identified too late for effective treatment. It is “silent” or asymptomatic in its earliest stages. In some cases, however, there are early symptoms like discolored urine that, if leading quickly enough to diagnosis, might make the critical difference between success and failure in treatment.

In my case I had noticed discolored urine more than two months before I called the nurse practitioner at my HMO to report it, but after another week when another symptom appeared (diarrhea resistant to Immodium), she set up an immediate appointment with my doctor, and he set the diagnostic process in motion so quickly that by the end of the week I was definitely diagnosed and heading for surgery.

This might not sound like the most rapid transition from symptom appearance to treatment, but many Americans cannot count on such responsive health care once they decide to report a symptom to someone who might help. One lesson from my unsystematic comparison with my less fortunate friends is that everyone should report a symptom as soon as possible, but another one is that HMOs and other medical facilities should make it as easy as possible for patients to report and get medical attention for mysterious symptoms that might represent pancreatic cancer in its earliest stages. When patients believe – from their past experience in the clinic – that they can’t get that attention and therefore postpone reporting a symptom until it begins to interfere with their lives, their probabilities of dying from pancreatic cancer and other such silent killers are elevated. Given the present state of treatment for this disease, facilitating its early identification in primary health care services should be among the highest priorities.

Robert L., Belmont, MA  12/5/06

I was diagnosed in February 2005 with adenocarcinoma.  This was after a long 8 months of back and stomach pain and many, many ER visits with my diagnoses being from gallbladder (had that removed) to idiopathic pancreatitis.  I was told I was too young and healthy for pancreatic cancer.

In February 2005, hoping to get to the reason for this idiopathic pancreatitis thing, I went to the hospital in Baltimore and was diagnosed with IPMN (intraductal papillary mucinous neoplasm) by EUS. A second biopsy revealed adenocarcinoma.  I was not operable as the tumor was around the artery.

I then flew to Seattle and did chemo of Gemzar and Taxotere for 6 months.  I handled this regime well and by my second treatment the back pain had gone away.

At the end of this treatment regime I flew back to Baltimore and was told I was now operable.  I think the folks at the hospital were in as much shock as I was to hear this wonderful news.

I had my surgery October 2005 and all went well.  I had to have my entire pancreas removed as my tumor was in the body and I am diabetic, but I handle this well and I am doing good.  My surgeon told me that there was no tumor left in my pancreas, only some residual micro cells.  I had clear margins and clear lymph nodes.

In my case the biggest thing for me was getting diagnosed.   My doctors thought I was too young and too healthy for pancreatic cancer.  Looking back over my tests I found that all my CT's revealed a dilated pancreatic duct, blood work revealed elevated lipase, and I was losing weight.   There has to be more done to educate the medical field that pancreatic cancer is not an "old persons" disease anymore.  I had good doctors and I had GI specialist and I don't live in a rural area, but my doctors were just not looking for pancreatic cancer in me because of my age and my overall good health.

The biggest thing for me was being able to hang on to that hope. It took me a while, but I did realize that you must have hope to fight this battle.

Keep the hope and all positive thoughts.

Mary G., Palm Springs, FL  11/30/06

Because of all the hope that this web site has given me and others, I would also like to post this story about my father and hopefully it will be an inspiration for another individual or family member.

Since the diagnosis of my father with pancreatic cancer, it has put a whole new perspective on me about life, and how important it is to value your loved ones daily. My heart is so full of thanksgiving for my husband, children, parents, siblings and friends.

About one year ago, right before Thanksgiving 2005, my father was experiencing jaundice symptoms and fatigue. After getting checked out by his family doctor he was advised to get more tests completed. In November 2005 my father was diagnosed with pancreatic cancer. It was such shocking news for the whole family, because my father is such a healthy person; he eats healthy and is an avid hiker and runner, he used to run miles everyday!! After going into surgery, the doctor gave us the news that the tumor was inoperable. The doctors approached us like there was nothing else they could do, and informed us it could be 2 months or 2 years. It was so heartbreaking to hear the news that the cancer was inoperable. However, we did not give up hope.

After doing extensive research, I urged my parents to get a second opinion. My parents headed to Seattle to get a second opinion and we received the same news that because of the location of the tumor, it was inoperable. However, the doctors and staff in Seattle were awesome, positive and encouraging to us, and my father decided to go ahead and receive chemotherapy treatment. After 3-4 months of chemo, we had great news that my fathers CA-19 markers were down to normal and that the tumors were shrinking. What promising news to hear and we were so thankful.

This month, November 2006, is exactly one year since my father was diagnosed and he is still living strong. He is such an inspirational person to me because of his positive attitude, which is full of faith and living. Since the diagnosis, my father has remained so positive and steadfast in his faith that he will beat this. It has been such an encouragement to my family.

I can truly say, that even after receiving that devastating news last Thanksgiving, there has been something so positive that has blossomed out of this whole experience that is beyond my own understanding, and this Thanksgiving I am truly thankful!!!

I know that there is hope, and out of times of difficulty we can grab a hold of this hope; this hope that is so real and so tangible, and if we just grab a hold of this hope, we will never fall.

Tai, Tacoma, WA 11/19/06

I am writing this story on behalf of my husband Brian. Brian was diagnosed with pancreatic cancer, adenocarcinoma, stage III on February 27, 2006.  He was 38.  His tumor was not operable as it was wrapped around two veins and up against an artery.  We were told that the chances of him becoming operable were very small.  His CA 19-9 was 5000.  We have four young kids, our oldest being just 6 and our youngest not even a year at the time of diagnosis.  At the time, the oncologist told us that we had a year, probably not two.

What an awful time, we were given so little hope.

The doctors chose to treat Brian very aggressively due to his age and overall good health.  The idea was to give him more time.  They started him with high dose radiation on a Tomotherapy unit and two different chemos, Xeloda and Oxiliplatin.   This lasted for six weeks.  Brian started taking Glyconutrients after he completed radiation.  Four weeks later we had the first CT scan, which showed tumor shrinkage and no metastatic disease.  The tumor still involved the veins and artery, so it still was not considered operable.  His CA 19-9 was down to 447!  Brian then started on GTX for three cycles.  Another CT scan was done which showed more shrinkage. It was still considered inoperable.  His CA 19-9 was down to 119!  Back on GTX for two more cycles.   The next scan showed no shrinkage, so we were very surprised when our oncologist started talking about surgery!  The next two weeks went very quickly.  We met with the surgeon, who told us that because it was eight months post diagnosis, the chances of her finding metastatic disease were very high.   She also said that she would not be sure if she could complete the surgery due to the vein and artery involvement, but that because of the situation “heroic measures” were called for.

Surgery was scheduled for November 2, 2006.  The surgeon found no metastatic disease, and when she got to the tumor she found that the vessels were surrounded by scar tissue, not cancer.   There was no need to resect any of the vessels. She kept finding spots that she was sure were cancerous, but every biopsy she sent to pathology came back as non-cancerous.  The surgeon was able to do a standard Whipple.  The best news came a few days later, when we were told that no cancer could be found in the tissues that were removed.  Clean margins, no lymph involvement, and no cancer in the tumor.

I wore a pin the day of the surgery that said, "Never give up. This may be your moment for a miracle."  And it was.

Sheryl P., Cottage Grove, WI  11/12/06

I worked as a nurse on the cardiac floor for 25 years. I went to a family reunion in January of 1995. Every bite of food I ate bloated my stomach. I called home and made an appointment to see my doctor on that Monday. I worked over the weekend and looked like I had a real good tan. The doctor ran blood work which showed I had an elevated bilirubin level. My skin was carrot orange.

The doctor then ran a CT scan which showed nothing. I consulted a gastroenterologist who did an ERCP to try to get stones out of my gallbladder duct. The doctor was unable to get the tube down. He admitted me to the hospital for an exploratory laparoscopy. I then consulted a surgeon. When he opened me up, he found a tumor on the head of the pancreas. He preformed a Whipple procedure to remove the tumor. During the Whipple procedure, he removed a portion of the stomach, the head of the pancreas, and a portion of the jejunum.

When I woke up, I had a feeding tube in the stomach and was told that I had pancreatic cancer. The surgeon wasn't sure all the boarders were clean so I received 5-FU over 3 doses and 28 radiation treatments.

I thought everything was ok but then I became an insulin dependent diabetic.  Two years later in 1997, I was doing a routine work up and the chest X-ray showed multiple tumors in places of my lungs. The doctor did a lung biopsy which showed more pancreatic cancer cells in my lungs. I was then treated with 15 chemo treatments. As I was finishing that up, my left leg felt like it was becoming dislocated. The doctor did another x-ray and found a hot spot. I received 10 radiation treatments which I was told would not cure the cancer but could help the pain. Now, I do a work up every year just to make sure I'm still clean.

I now attend weekly cancer survivor group meetings. I'm also a member of the PanCAN TeamHope of NW Louisiana.

Lynda H., Louisiana,  11/09/06

This story is about my Aunt Linda, my Godmother.   In May of 2006 my aunt went to the doctor after a family member noticed that her eyes were yellow.  After a few exams and tests it was determined that her gallbladder was the source of the jaundice.

Shortly after the diagnosis my aunt was taken to the hospital as a result of a severe gallbladder attack.  The gallbladder was diseased and removed but other tests indicated a blocked bile duct.  After a couple of scope exams and a biopsy of the growth causing the block it was recommended that she seek the advice of a doctor specializing in this problem.

A week or so later, my aunt checked into the hospital in Atlanta for an MRI to determine the area and cause of the blockage. It was determined that there was a tumor in the bile duct just above the head of the pancreas. Although prior tests indicated that the mass was benign, the doctor who suggested the Whipple procedure couldn't confirm the benign diagnosis and indicated that the tumor may be malignant.  Prior to my aunt's surgery, the diagnosis on my her paperwork indicated that she had pancreatic cancer.  It was devastating! Our family never had an experience with cancer and we were shocked that for the first time a member of our family was potentially stricken with the disease.  What made it more painful for me personally was that in July of 2005 I lost my mentor and close friend to pancreatic cancer.  We had many prayer groups praying for her and a great deal of support.  We remained as positive as we could to support my aunt through this ordeal.

Later in June my aunt went back to the hospital for her Whipple procedure.  Her surgeon was remarkable! He completed her surgery in 3 hours and said that the tumor was encapsulated and all her margins were clear.  There was never any discussion about "cancer."  It was only after my aunt went back to the surgeon for a follow up that she discovered that her tumor was indeed malignant.  Apparently my aunt was supposed to follow up with an oncologist but was never told to do so.  This month, my aunt consulted with an oncologist who suggested a full body CT scan and said that he would recommend some chemo depending on the results of the exam.  He told her that the pathology reports after her Whipple procedure indicated that the tumor was malignant and encapsulated but that there were some cancer cells also found in the head of the pancreas too.  The oncologist confirmed that she did have pancreatic cancer. Thankfully, the recent CT scan was completely clear.  The oncologist told my aunt that she is cancer free and he refrained from ordering chemo treatments.  He said that they will keep a close eye on her from this point forward.

When my aunt first thought there was the possibility of a cancer diagnosis she was devastated and believed that she was going to die.  After all, when people hear "pancreatic cancer" one immediately believes you've been handed a death sentence.  In fact, when she was in the first hospital for the gallbladder surgery, one doctor popped into her room and said that if they determine she has pancreatic cancer she can expect to live one to two years. . .and then walked out.  He's fortunate that one of the family members wasn't there when he made that statement.  My aunt's story is proof that pancreatic cancer isn't a death sentence and the outcome of a pancreatic cancer diagnosis can be positive.

By my observation of the ordeal and what I was learning was that, I imagine in most patients, is they shut down when they learn they might have cancer.  It's up to someone else to listen, ask questions and do the research to become knowledgeable of what options are available. I spent hours and hours researching pancreatic cancer and what could be expected prior to and after surgery and what the potential pitfalls could be depending on the stage of the cancer.  Everyone should play a role in assisting the patient and also respecting their need for privacy.  We all tend to want to be there, hands on for them when in reality there are times when they also need to be alone in their thoughts.  However, a positive environment is essential and the power of prayer is the best medicine.

My aunt's story also proves that statistics mean nothing! Pancreatic cancer patients' situations are specific to them and their outcome can't be determined by the "odds." There is always hope and, as I learned, there are many, many options available today.

With continued research and improved treatments, this is a disease that can be beaten. Never lose faith.

Mark B., Grayson, GA  10/25/06

I am a 47 year old female who would like to share my story in the event of my being any type of inspiration to someone else as much as this site has been for me. September 23, 2006 was my one year anniversary of being diagnosed. I never thought I would be here today.

On September 22, 2005, I went to my doctor due to a persistent stomach ache, slight back pain and complete loss of appetite.   After blood work, he sent me to the hospital for an ultrasound, suspecting a gall bladder problem (stones).  Test results showed a very elevated bilirubin (4.3). and jaundice (of which I couldn't even tell) and my doctor assumed a blocked bile duct of which a stent was going to be put in by a specialist the next day.  Upon meeting that evening with the specialist, he reviewed my ultrasound and said he saw no gall stones.   He wanted a CT scan done to be sure. Of course, the CT scan showed the tumor on the head of my pancreas.  I was devastated.  I was only 46 with a seven year old to still raise.  Thankfully, my other 2 boys are both grown at 19 and25.

Next was the waiting game of finding out if the tumor was even operable. It was!  I had my Whipple done the first of October.  What an extremely difficult surgery and recovery.  But thanks to my most gifted surgeon and his associates from at the hospital, I am blessed to still be here.  Approximately 6 weeks after surgery, my chemo started (Gemzar and Xeloda).  Again, my wonderful hematologist/oncologist and her associates got me through that.  Next was the 5 1/2 weeks of radiation, every day, to drive from Indiana to Chicago and be there at 6:00 AM for treatment.  I made it through 4 weeks with no problems, then it all caught up with me.  I didn't think that I could make it the other 1- 1/2 weeks.  Thanks to the most wonderful, patient man (my fiance), my wonderful children and my entire support system, they refused to let me give up and I finished.  Yeah!  Then the last round of chemo started.  I had a few problems with low blood counts, but with reduced doses I did finish.  Now, the CT scan and CA19-9.  On August 8, 2006 I had the latest one done, and all is clear. I am cancer free at this point.

I feel good. I have some minor stomach issues to get used to the re-routing of things from the surgery and the total strength that I had before my diagnosis is just not the same.   But hey - I'm alive. I have learned that each day is a gift to enjoy.  For some reason, I was given a 2nd chance at life and I am thankful every day.  I am very grateful and humbled.

For those of you who have this disease, please, do not ever lose faith or hope.  With all the new advances in medicine and research, we will overcome.  Thanks to my wonderful fiance, my boys, the rest of my family, friends and everyone's prayers and good wishes, I am still here and plan to be here for a long time.

Keep the faith and don't ever lose hope.

Vicki E., Merrillville, IN  10/1/06

I am a 49 year old female, who would like to say that it is so nice to find a support group such as this, with people sharing similar stories.  I was diagnosed with Crohns Disease in 2000, and suffered with multiple symptoms, and decided to seek a new specialist in Ann Arbor, MI.  The result of a CT scan for Crohns, thankfully revealed a tumor on the tail of my pancreas, and also my spleen.  A biopsy was ordered and the results were a pre-malignant tumor on the tail, around the size of a fifty cent piece. It was then suggested that because this tumor could eventually turn malignant that it be removed.

On July 5, 2006, a distal pancreatectomy and splenectomy was performed, by a brilliant lady surgeon.  The surgery was intense, but after a 7 day hospital stay, I am home recuperating.  I am now having problems digesting my food.  I was told that this is unrelated to my surgery.  I have painful spasms immediately after taking a few bites of food.  I've lost a little weight which is good, but this doesn't seem normal.  I went for an upper GI endoscopy last week, in hopes to find the problem.  This seems to be a slow recovery, but I am just thankful, that it was caught in time.

Minetta V., Grand Blanc, MI  7/28/06

In August 2005 I had an attack of some sort by the breastbone.  It was 2 am.  I had another one the next day and they both subsided in 2 hours.  I also noticed white stool, brown urine and blood in urine. I went to my primary physician and she ran tests (ultrasound).  I had excessive itching also.  The ultrasound showed nothing. I asked for an ERCP, and was turned down by the doctor who wanted a MRI.   This was turned down by my insurance company. 

I then pushed the GI doctor to run some tests as I had pain by the gall bladder and abdomen and could not eat any fats. I eliminated fats from my diet and saw the liver enzymes drop to almost normal levels and the itching stopped.  But the pain kept increasing in the gut.  I finally got an abdominal CT scan in November 2005, and finally heard I had pancreatic cancer on December 9.  I had a Whipple scheduled for December 20, 2005.

I asked my congregation to pray and had a prayer chain going . I myself prayed for healing and strength.  This was a very horrible time.   I was 53 at the time, and had no previous surgeries.   My CA19-9 was 61, so the surgeon thought that the tumor was small...the tumor was bigger than he thought, but he continued to remove ALL the cancer from the head of the pancreas.  Pathology showed seed cells present in 4 of the 15 lymph nodes that were taken out.  My recovery was quick, with some infection in the incision.  I lost 110 pounds total to date.  They put me on adjuvant therapy (chemo) using Gemzar and radiation with 5FU. 

Now, I an thankful everyday and pray that the cancer is gone.  I am back at work, and just had another abdominal CT scan.  My CA19-9 is now 4, but because I do not produce the proteins to raise the CA19-9 indicators, a level of 20 could mean cancer.   I will never see 2000 or 3000 level.  Now, I take pancrease and wobenzyme and my weight has stabilized.  I do have malabsorption to some degree.  I also have scar tissue that has formed in the bile duct from the radiation and surgery, and this will have to be addressed.

I cannot express how much it means to be alive. (My husband is thankful also).   I have diabetes (had before the Whipple) and control this with diet.

The radiation is done and I have 1 more chemo, BUT AM CANCER FREE!!!!!!!!! For those who are given a death sentence by the medical establishment. don't give up!. Keep looking up!!!!!!!

Katherine G., Rochester, NY  7/27/06

My journey began in April 2005 when I was diagnosed with Type II Diabetes. In August of 2005 I started losing weight with constant diarrhea. My doctor started testing for something wong with my gallbladder.  On October 1st I woke up jaundiced. About this same time I had a CT scan and it confirmed a tumor on the head of my pancreas. I had an ERCP and a stent was placed in my biliary duct (I had this done three different times – 2 stays in the hospital).

I was sent to a surgeon, but surgery was not an option. The cancer had spread to my liver. I was sent to an oncologist and was eligible for a clinical study. On November 1st I started GEMZAR along with the clinical trial drug of Orathecin (Rubitecan). My CA19-9 was above 2,000. As treatments continued every month my blood marker would tumble down. With each CT Scan my tumors were shrinking. In May my CA19-9 was 22.8. Hallelujah! I had a CT Scan in June 06 and my tumors are GONE! Along with my prayer warriors we have prayed every day to push the chemo through my body into my liver then into my pancreas. Our prayers have been answered.

I will keep taking chemo treatments for now. I went to the surgeon for precautionary reasons. He told me not to change anything I am doing. I have returned to my job. I feel great with the exception of the fatigue that goes along with the chemo.

If you are newly diagnosed please do not give up.  I have been given another chance at life.

Judy C., Louisville, KY  7/16/06

My husband Doyle, at the age of 57 was diagnosed with inoperable pancreatic cancer.  Prior to this diagnosis, Doyle had pancreas attacks that go back to 1972 . I stopped counting at 50. In 1987 they discovered he had pancreas diversion. He had surgery to correct this and we all hoped this would cure him. However 6 months later they began again but not as severe. They then said he was in the 4 percent that they have no answer. In 2000 his attacks became closer together, lasted 3 days to just hours.

In 2002 he had a procedure to check his pancreas.   At that time we were told he had a nickel-sized mucous tumor in the head of his pancreas. Doyle was scheduled to have his pancreas removed on May 17, 2002.  The surgeon found that his history of pancreatitis had attached his pancreas to his main blood vessel, instead of removing the pancreas and tumor, they sewed his duodenum to his stomach. It was a heartbreak but we were given hope a few days later with the clinical trial.  Doyle signed the consent form for the radiation and chemo on June 20, 2002, his 58th birthday.  We live just over an hour from Rochester and Doyle managed to drive back and forth all 6 weeks of radiation and chemo. He did have a set back with surgery to correct a bowel blockage in September of that year. Because his health was weak from the treatments, this surgery was very hard on him. His incision opened and we had to pack that for almost 9 months. Doyle lost about 50 pounds and became very weak.

The good news is that he is now 62, has gained most of his weight back, has been free of pancreas attacks since surgery on May 17, 2002 and his ct scans to this point show no activity. Each day is a miracle and our faith has given us hope for the future. We try to think positively and live our lives to the fullest. Live with HOPE.

Carroll L., Onalaska, WI  6/27/06

This is a story about our angel, my mother, Jennie McLaughlin. In 2001 at the age of 71, my mother's hairdresser noticed her skin looked a bit discolored. She called her doctor and when he heard the word jaundice, his heart fell. He knew immediately what the problem probably was, pancreatic cancer. At that time, there was never any history of cancer in the family. My mom had survived 2 heart attacks, high blood pressure, high cholesterol and 9 pregnancies! Without any complaint she underwent a Whipple procedure to remove the tumors with a waiting room full of her children, grandchildren, nieces and sister. After about 8 1/2 hours of surgery, we all crammed into the recovery room to see her. Her doctor told us she probably wouldn't be awake or alert but we could take a minute to see her. She sat up, looked at all of us around her and said, "Everything that matters in life is here."

This year we celebrated my son's 5th birthday and 5 years of mom being cancer-free. However, in February she wasn't feeling well and had some bloodwork done which revealed problems with her thyroid. When she was sent for a CT scan, the news was heart-wrenching. They had found tumors on her lungs. The cancer had returned. She had another scan on Memorial Day weekend which we recently found out showed that the tumors were very slow growing and no treatment was advised at this time.

My mom is a true testament to the power of positive thinking and prayer. She never let the diagnosis get her down and often said, "I feel good today so I'm not worried about it". We continue to be amazed and blessed by this true vision of an angel in our lives. Never complaining, never negative-my mother is truly an inspiration about what really matters in life.

Jennifer K., Rochester, MI  6/27/06

I was diagnosed with pancreatic cancer that had spread to the liver in August of 2004 in Pensacola, Florida.

The cancer was discovered on a routine CT scan after receiving kidney stone treatments. I was referred to a local surgeon who ordered a biopsy of my liver.  After waiting a WEEK for the results the pathologist bungled the diagnosis, and said I had fibrosis of the liver, only to change his mind an hour after the surgeon confronted him. Apparently he forgot to run the “SPIN TEST”. By then hurricane Ivan was then bearing down on Pensacola so my wife and I decided to go to Tampa to see the supposedly top pancreatic cancer doctor in Florida. After sitting in an overcrowded waiting room full of sick people; a doctor looked at my CT scans from Pensacola for 3 minutes turned around and told me I had ONE YEAR TO LIVE! He said that chemo would only make me sick and was like deer hunting with a BB gun!  After all of this he then asked me to get my affairs in order and return the following week to begin treatments. I said no thanks, picked my wife off of the floor and left there determined to get another opinion, because I was convinced that this was not going to kill me!

A few days later I went to a cancer center in Zion, Illinois where they re-ran all the tests and told me that they could do something for me. They exhibited HOPE and common courtesy that I had not seen at the two previous facilities. After 8 months they got the cancer into remission (June 2005) as verified by a PET scan and I have been clear ever since as verified by a PET scan on June 5, 2006. The treatments consisted of FUDR and Leucovorin pumped into a mediport for 4 hours a day over 5 days. One day during the 5 day session I was given intra-arterial chemotherapy (Mitomycin and Cisplatin) directly into the liver and pancreas. These routine was repeated once per month over the 8 months. After the June 2005 PET scan, they had me return every 3 months for a CT scan, blood test and physical exam. Also they had me take an oral chemo (Xeloda) which they stopped after the June 5, 2006 visit.

I experience very little side effects from the treatments: no hair loss, nausea, weight loss, extreme platelet, white blood cell or red blood cell loss.  Along with the chemotherapy they gave me natural supplements: milk thistle tablets, green tea tablets, fish oil tablets, maitake mushroom tablets, melatonin, selenium and vitamins A, C E and B6.  Also I changed my bad diet to include lots of broccoli and vegetables, buffalo (much leaner than beef), no fried foods, no processed meats with nitrates (hot dogs, sausage and bacon), lots of distilled water and no sodas.

I also thought about what I had to do spiritually.  My answer was to get rid of un-forgiveness. I went to about 6 people that I had held grudges against and asked them to forgive me.

The hospital did everything right. They combined a vision of HOPE with conventional chemo, religion, diet, naturopathic supplements with prompt and efficient testing for progress.   After talking to many people at the hospital I found that the guy in Tampa was not alone! Doctors all over this country give a similar death sentences to their cancer patients. The mind is a powerful tool in the fight against cancer. When a cancer patient listens to and believes a negative doctor they start to program their demise. They convince themselves the treatments won’t work. Many have literally died almost to the day, the time the doctor gave them!  I am thankful every morning for the gift I have received and that I never lost HOPE and the belief that I would be delivered from this scourge.

Roger S., Stapleton, AL  6/14/06

My name is Bernadette.  I am writing this on behalf of my father to offer inspiration to those battling with, and the family members also fighting the battle against pancreatic cancer.  In December, 2004, my dad started complaining of an extreme backache. After several x-rays, his family physician told him that he had a cracked rib and prescribed him mild pain medication. Days went by, and the pain did not ease. My dad also had renal failure as a result of diabetes.  My father began feeling extremely nauseated, which now accompanied the back pain. He complained to his renal specialist, who immediately ordered a string of bloodwork.  My father began to look jaundiced.  When bloodwork came back my father's bilirubin levels were over 9.0, extremely high. The test results were passed onto his primary care physician who explained what could be going on.

After further testing, his doctor came back with some terrible news...it was thought that he either had liver cancer or worse, pancreatic cancer.   A special endoscopic ultrasound confirmed a mass on the head of his pancreas. It was biopsied, and two tests came back negative for cancer. Doctors at the medical center were convinced that these tests had to be wrong. We were all ecstatic with the news. Then, a third biopsy confirmed the worst...he had pancreatic cancer. Right away, we were told the challenges and that given the progress of the symptoms there was a big chance the cancer had spread to other parts of the body. He showed me the prescription form with those awful words. It was like business continued as usual and we kind of shrugged it off. Within two weeks my dad was scheduled for the Whipple procedure. It was attempted, however, given his large size at t he time of the surgery, they were unable to reach the pancreas.

Instead, a palliative measure was taken and a biliary by pass was completed in hopes of easing the jaundice. It worked, but the recovery was extremely tough. After 3 months, and 60 pounds less he began to feel a little better. My father then began treatment with Gemzar and to much surprise, about a month and a half into treatment, his cancer levels had dropped dramatically. However, his blood counts were way off, and he began needing blood transfusions every other week. Determined to find a better solution I began looking up clinical trials and found one with little side effects being conducted at an institution...cyberknife treatment. There was a doctor heading a study using cyberknife treatment that had previously been used on brain tumors. My father was accepted into the clinical trial. We made numerous trips from Arizona, staying with family members in the Bay area.  He went through numerous tests at the hospital.  My dad and our family felt so at ease withthe doctor's sense of confidence and he we knew if my dad had a chance at beating this, this would be it. To make a long story short, after the actual cyberknife my dad attended two subsequent appointments.  At the 4 month appointment in February, 2006, my father received the news of a lifetime...NO VISIBLE tumor on his pancreas...all of his other organs checked clear as well. I never had a bad feeling about this, I never pictured my dad heading down the typical destructive path deadly cancers take you.

Unfortunately, my dad had multiple health issues, and almost a month after this great news, he passed away from heart failure. I truly believe had cancer been the obstacle facing my father, he would be here with us today. He was not a drinker or smoker, never had been. Cancer does not discrimiate. It is so assuring to know that there are people like the doctor who headed the cyberknife trial and his associates out there working to improve outcomes for people with pancreatic cancer. He has dedicated his research towards confronting this ugly disease head on. Cyberknife was a painless procedure. It can be googled with key words pancreatic cancer + cyberknife.

I wish everyone being touched by this disease the best of everything down this path.  It can be conquered, many will conquer it, and in the future, you will hear about favorable outcomes, and stories of encouragement will drown out the negative ones.   Blessings to all.

Bernadette M., Bisbee, AZ  6/12/06

Wow, where do I begin?  In October of 2001 I awoke in great pain, but went to work as usual.  An hour into work my pain increased, so I left and went to the ER.  After an ultrasound, the next thing I knew I was being wheeled up to the 6th floor.  I remember seeing signs above me saying things like cancer this, cancer that.  I asked what the heck was going on. The tech said she couldn't say anything except that they found a mass on my pancreas.  After many "tests" and procedures that failed, I decided I wanted to speak to a surgeon.

On December 6, 2001 I had the surgery and they removed over 1/2 of my pancreas along with tumor/spleen and 9 lymph nodes. (neuroendrocrine tumor).  After a battle recovering and follow up CT scans every 6 months for 3 years my doctor said that he sees no reason for more CT scans unless I feel as if something is wrong.  Well, almost 4 years "cancer free" and I felt a pain in the right side of my abdomen.  After being nagged by my wife for a couple of weeks (God love her), I went to the ER.  Had a CT and results were that I had many tumors in my liver, 4 of which were very large.    I was set up with an oncologist and his suggestion was that although I have a life ending disease I should have surgery to remove what they can to prolong my life.  No chemo/radiation due to being such a slow growing cancer.   At first I declined surgery, due to the battle after the first surgery.  My surgeon called our home at 9:30 pm from her home and talked me into surgery. 

On December 19, 2005 I had my second surgery.  I had RFA (radio frequency ablation) on 2 tumors and 2 other tumors resected, with residual disease still present.  I remained in hospital for 9 days.   About 1-1/2 months later the cancer in liver grew.   I have 5 tumors that are larger then those removed.   I started Sandostatin injections at this time to hopefully stop the growth of tumors.  My doctor told me that this drug will most often take time to take effect.  It is injected intermuscular every 28 days.  As predicted, follow up CT scans showed that cancer has grown in my liver with mets to both my lungs.  With 12 active tumors in my body, I still kept taking injections.

On May 8, 2006 I had yet another CT.  Results we received on May 12 was the best news I've had in a long time.  My tumors have stopped growing, and 2 in my right lung have actually decreased in size.  I feel so good about my last scan, that due to running out of insurance soon, I returned to work on Tuesday, May 30, in order to keep going with my treatments.  I walked in my first Relay for Life walk this past weekend and was proud to raise money for more research on this darn illness I live with.  I have chosen to live my life to the fullest and keep my cancer a very small part of my life.

ALWAYS, ALWAYS REMEMBER TO NEVER EVER STOP FIGHTING THIS DISEASE!!! WE CAN AND WILL BEAT IT !!!!

Stephen W., Monroe, MI   6/7/06

You’re a Statistic of One

In January of 2004 I was officially diagnosed with pancreatic cancer. This was after experiencing over a year of related symptoms. Pancreatic cancer is so very hard to detect in the earlier stages. I was told I had pancreatitis, pancreatic divisum and the like. In November of 2003 after having an ERCP with a suspect area a biopsy was taken of the area and I was told that it was negative. What a relief at the time. Scheduled for a follow CT scan in January of 2004 things turned for the worse and I had all the tell tale signs of cancer (diarrhea, tea colored urine and jaundice). I was told all along the way about the statistics involving this disease and I told the docs from the beginning I am a statistic of one. I’ve kept that approach ever since.

In February of 2004 the first attempt at the Whipple procedure was done and after 10 hours on the table it was aborted and the tumor had placed itself around the hepatic artery which made the operation not possible.
After the operation I contacted PanCAN as a resource for my condition and find out further information as to what type of options were available. I entered a clinical trial along with another person whose condition was the same as mine. The clinical trial was not successful although the tumor did not grow much. We both then went on a regimen of chemo of gemcitabine and oxaliplatin. My friend had to stop the oxaliplatin for adverse reactions and went on the oral cetuximab. That was the only difference as to our treatment.

During the summer of 2004 we had CT scans done and as I was having trouble with stents in my duct, I decided to go in again and attempt the Whipple and if it could not be done I would get a pancreatic bypass. Going in to the 13 hour surgery our scans both showed that there was no improvement in the size of the tumor. The whipple was again aborted on me and I had the bypass.

In November my friend had his Whipple done and now get this his tumor was gone.  Again it shows that you can go by scans alone. Today Mark is back to work with no signs of the cancer.

My journey continues as I believe in taking control of my treatment with the doctor. I take a tea daily (Essiac tea) which is just one of the things that I use in this battle along with faith and the inner strength and healing given to all of us.  Along with this I have my family and tremendous support from my friends and loved ones.

On May 14th we put on the Trails to a Cure 8 mile trail run and 3 mile fun walk which was successful in spite of the terrible rain we had. I was able to make it there although I had gone into the hospital with massive infection of the liver and lung.  After a 9 day stay I am again home and recovering and continue the battle. 

My advice to all is remember you are a statistic of one and you take control of your treatment whatever those choices should be.

Steve H., Bozrah, CT  6/1/06

Just a quick note to hopefully inspire people not to give up. I don't want to "brag" (for want of a better word) because I am not.  A little bit of me is taken away every time 1 of my friends passes from PC and there have been more than a few.  May 20, 2006 was the 10th anniversary of my diagnosis. The remarkable thing is that the tumor was not resected.  So don't give up hope.  Every one is different.

Stan H., Turner, ME  5/24/06

I was diagnosed (after many incorrect diagnoses) with pancreatic cancer in December of 1998.  I went through chemo and radiation to try to shrink tumor enough for surgery but it didn't.  I then went to Mayo Clinic and they performed intraoperative radiation surgery.  This procedure was long and unpleasant, but I am now a 7 year survivor from surgery date.  Life is good!

Julie S., Cedar Rapids, IA  4/20/06

This story is about my dad and my hero, Tom. On April 25, 2005, at a very young 55 years old, my dad was diagnosed with pancreatic cancer. My dad was having back pains that grew in severity and started to develop in his abdomen. My dad's doctor thought that he was having gallbladder problems and ordered an ultrasound. During the ultrasound they noticed that there was some clouding in the pancreas and he was sent for a CT scan. The CT scan showed that there was something going on in the pancreas and also some spots on the liver. My dad was scheduled for a consultation with a local surgeon but it would not be for about 10 days.

We live in a small town and wanted to make sure that my dad had the best care that we could find in the nation. We were also frantic for answers and hoping for news that it was not cancer, so we immediately got appointments for a biopsy at the Mayo Clinic. The biopsy confirmed our worst fears, that my dad had pancreatic cancer. They also told my parents that he would not be able to have the Whipple, because the cancer was involving the blood vessels and that it was possibly in his liver even though they were not able to prove it with a biopsy. As many of you know this was absolutely devastating news.

I was left thinking how could this happen? My dad is the backbone, strength, security and hero of our family and everyone who knows him. My dad never smoked, is very active and a wonderful person. It seemed very unbelievable. My dad is the one who is always helping those in need, how could this happen? When my parents asked the doctor about prognosis, the doctor told my parents the statistics. This was not acceptable to us. We immediately started spending every moment researching. Within days of returning from the Mayo Clinic my parents were off to Seattle in search of more hope. Again, they came home with little hope but at least they came home with a chemotherapy regimen from one of the best doctors treating pancreatic cancer.

Even though we were not given much hope I had complete faith in my dad. We did not accept the statistics and decided that we would fight with everything we have. That is what we have been doing for almost a year now.

My dad started chemotherapy the first week of June 2005. We were so excited, because after only 2 treatments of Gemzar and Taxotere, my dad's pain was almost completely gone.  Our local oncologist, the nurses and staff have been absolutely wonderful! (Thanks everyone!) The first week of August was when my dad had his first CT scan and blood work to see if his treatment was working. My dad's CT scan showed slight shrinkage. The doctor said that there could actually be more shrinkage because the CT scan could be showing scar tissue. My dad's blood work showed that his CEA count was now in normal range and his CA19-9 count was cut almost in half. We were extremely happy.

A couple of weeks after this CT scan, my dad's pain started to return. We were again on the low part of the roller coaster. In October, they determined that the current treatment was not being effective and changed his chemotherapy to Oxaliplatin, Avastin and Xeloda. This has definitely been a more aggressive treatment with more side effects.
Since October, my dad has continued to improve. We received new CT scan results just a couple of days ago and the CT scan showed that my dad's cancer is stable! We were very excited.

Through this journey my dad has been amazing. He refuses to just sit on the couch and feel sick. He has continued to work full-time; he spends his weekends going out getting firewood, fishing, remodeling and many other active things. I think this has a lot to do with how well he has done.
Another important factor in my dad's success has been the family and friends that have supported him. My mom has been amazing. She has been stronger than I ever knew she was. My brother has also been a great support. The support from friends has also been wonderful. The second this all started we were overwhelmed with cards, phone calls and prayers. I often teased my dad that it would be easier to call the White House than to get through on his phone.

I ordered PanCAN bracelets and when people around town heard about it, I was immediately receiving requests for hundreds of bracelets to show support for my dad. (Thanks Fritz and Jim K.!) The PanCAN Survivor network has also been a great source of hope.

I know this is a long story, but it has been a long journey. If I could say anything to those of you who are just starting on your journey, it would be to never give up hope, be positive, be active, and do NOT put your faith in statistics. Instead, put your faith in yourself, your family, your friends, and prayer.  Good luck!

Carrie P., Butte, MT  4/17/06

In April 2005, I suffered an obnoxious back ache so I walked over to the local ER near my home, where a physician requested a CT scan that reflected a cyst on my pancreas - on the opposite side my back ache.  After referral back to my primary physician, a surgeon was called who advised he wouldn't operate on a cyst so small, it had to be at least 5 cm.

We monitored it's growth from 1.7 cm to 3.5 cm. in 8 months.  Then a specialist I found referred me to the pancreatic surgeon, who read the CT scan and stated how concerned he was for my life, that a biopsy was needed to be sure, but he thought it was a carcinoma.   Within weeks a biopsy was preformed via EUS-FNA, which revealed high CEA levels (tumor markers).  They then determined it was a case for resection.   The surgeon said they didn't know when this pre-malignant tumor could decide to change to malignant and spread, but that he'd have it out in 2 weeks to 2 months at the latest.  

Three weeks later I had surgery - in March, 2006.  It was a major operation I'm still recovering from and not a pleasant experience, but I'm grateful to the physicians who performed my open distal pancreatectomy and splenectomy because the carcinoma did not spread and they saved my life.

I hope to know other patients are as lucky as me!

Deborah C., Newport Beach, CA  3/28/06

In August of 2004, I was diagnosed with pancreatic cancer. I had not been feeling well for a while; I was losing weight and had a lot of digestive discomfort. After tests for gall bladder problems and ulcers proved negative, I became jaundiced which was a red light for something going on. Following a CT scan I was admitted for an ERCP and a stent was placed in the biliary duct. I remained in the hospital for 5 days and was scheduled for a possible Whipple; my best chance for survival.

I was in shock; I am a psychotherapist and I had seen a full day of clients on the Friday before I was diagnosed. This can't be me; I have a lot to do; I have children and 5 grandchildren; a husband; a full time career!!

Following the surgery, to my disappointment; they did not do the Whipple, but decided to give me chemo and radiation before trying again. I had Gemzar and Oxaliplatin for 6 weeks on, one week off, followed by chemo and radiation for another 4 weeks. By Christmas I was pretty tired; couldn't eat very much and was on a feeding tube for 12 hours a day. Surgery was scheduled for January 12, 2005.  This time they were able to do the Whipple, following that I had chemo again; Gemzar and Oxaliplatin for 12 weeks; one week on; one week off. Due to weight loss and low blood counts, I wasn't able to finish the chemo until the end of June, 2005. I was never so happy to be rid of the feeding tube in July, 2005.

I am an insulin dependent diabetic, but that does not cause me problems now that I have figured out a good plan of eating, exercising and taking insulin. I had lost 30 lbs., but I am stable at 106lbs; 5' 1/2 inches. I can eat a lot of food and I don't feel deprived.

I owe my healing to a lot of wonderful family and friends who prayed for me all the time. I continue to be monitored, but I feel that I am strong. I have been practicing Yoga; walking and I even took out my golf clubs and hit some pretty good practice shots a few weeks ago.

If you are newly diagnosed, I know how hard it is to think positively when you read the statistics. I found that taking one day at a time, and often one minute at a time was the most helpful. Be kind to yourself; surround yourself with positive people who have your interest at heart. My doctors, nurses, nutritionist, etc. were wonderful. It was a difficult journey, but I learned a lot.

I am grateful for every day that I have. Stay strong.

Diana D., Cranston, RI  2/22/06

This is my husband's story. His diagnosis came in August 2005 and initially we were given little hope. It has only been 5 months, but he has seen the tumors on his liver reduced by 75%.

The last week of August, my husband was ill with what we thought was a case of diverticulitis. He had a lot of abdominal pain and bloating. Our family doctor treated him with antibiotics and pain relievers for several days and told us if he was not improved in a few days, he would order a CT scan. We ended up in the ER on a Saturday morning. The ER doctor thought there was an obstruction and insisted that my husband drink 32 ounces of contrast before the scan. The doctor and the nursing staff were very unsympathetic to his pain. He was so obstructed that he was violently ill from the contrast. Finally, they did the scan without the contrast. Once the results came, everyone's attitude changed immediately. They came in, closed the door and said those awful words, "There is a large mass on your pancreas, spleen, liver and involving the lower colon." He needed immediate surgery to relieve the blockage caused by the tumor in order to save his life.

We were transferred to another medical center. The surgery was performed and also a colostomy. The bowel was so distended that the surgeon was unable to safely biopsy the liver or anything else. The day after surgery, a needle biopsy of the liver was done and the diagnosis was confirmed - pancreatic cancer. The oncologist that saw my husband initially was the worst experience we had through the entire hospital stay. Fortunately, my best friend from childhood is a physician. I called her and asked her to do some research for me. I wanted to know what oncologist she would see if it were her. She directed us to a great guy who is very aggressive. Instead of sending my husband home to die, he told us that standard treatment would not help him, he needed more than that. He has a full time research assistant who found a clinical trial involving 2 monoclonal antibodies and Gemzar. My husband had to wait 28 days post surgery to begin and he was weaker every day. The treatment is in 8 week cycles and at the end of the first 8 weeks, there was 25% reduction in the liver lesions. At 16 weeks, there was a total of 75% reduction. He is now 3 weeks into the next cycle. He has had very little ill effects of the chemo, most notably a severe rash on his face, head, and upper body.

After all that he has been through, we have so much hope! My best advice to anyone who reads this is to take control of your own situation. Find an oncologist who is willing to fight for you. Educate yourself about the illness. If your doctor won't talk to you about clinical trials, find one who will.  And finally, I can't say enough about the importance of our faith. The prayers of our friends and family have supported us throughout this ordeal.

Jaye W., Arenzville, IL  2/2/06

In the fall of 2002, I started having severe back pain and began having some problems with eating. I got to the point where about the only thing I wanted and could eat was french fries. About a year and a half prior, I had been diagnosed as a diabetic and was taking medication for it. The doctor also had me on a cholesterol medication. I had a regularly scheduled doctor's appointment in early December. By Thanksgiving I was really having a lot of pain and nausea, but thought I would just wait until my regular appointment. I was seeing a chiropractor and taking OTC pain medication which seemed to help some. When I saw the doctor and told him about this, he had me stop taking one of the diabetic medications and the cholesterol medication to see if that helped. Within a week I called him back and told him it wasn't helping. He ordered a CT scan on a Thursday. The next day, a Friday, he called me at work to tell me I had a "mass" on my pancreas. He would not say the word "cancer." He referred me to a surgeon in his group. I saw her the following Monday. Initially she was going to have an ERCP done, but the doctor she was going to have do it told her I needed to be referred to someone in St. Louis. The following week I went to see a surgeon in St. Louis. He said, "I guess you know you have cancer." I told him I did know it, even though my own doctor would not say that word. He scheduled a laparoscopic procedure for January 2nd so he could see if I was a candidate for surgery. Had I not been, the prognosis was not good. Needless to say it wasn't the best Christmas or New Years we ever had.

Thankfully I was a candidate. I had my surgery on January 15, 2003 and spent two weeks in the hospital. They removed the head and tail of the pancreas, my gallbladder, spleen and some of the intestine and stomach. I went home with two drain tubes, a feeding tube and a catheter port. During the next six months (in which I did not return to work) I had many, many problems with my appetite (I went from 140 lbs at surgery to under 100 lbs), nausea and vomiting, diarrhea, dehydration. I had two more stays (short) in the hospital. In March 2003, I began my radiation and chemo treatments as part of a fairly new clinical study. That's when things got really bad. The chemo treatments really did a number on me. If it had not been for the wonderful support of my husband I really don't believe I would have ever gotten through it. I returned to work six months later while finishing my last chemo treatments.

Today, I weigh 125 lbs. It took about 2 1/2 years to get here. I continue to have blood work every three months and CT scans every six months as called for in the study. I still have digestive issues, but things are so much better than even a year ago. I take pancreatic enzymes and Lomotil. Unfortunately, what's left of my pancreas does not produce enough insulin so I am now taking insulin shots. The surgeon doesn't think I ever really had diabetes, but that the cancer was causing the problem, however as my endocrinologist has told me that I am "a diabetic, now."

I agree with many of the other stories I've read. Don't believe all of the statistics you read on the Internet or magazines, etc. They may have been correct in the past, but with new treatments and procedures, we have come a long way in increasing the survival rate for pancreatic cancer patients. They also give profiles of people who get pancreatic cancer. I, like many of the others I've read about, do not fit the mold. I did not smoke, drink excessively or have any unusual exposure to chemicals. At the time of my diagnosis I was a 45 year old, white female. I know that I will never feel completely 'safe' from cancer, but then again, no one on this earth can really feel that way about cancer, can they? I agree with everyone else who has posted their stories in that with all of the bad, a lot of good also came of this. It really makes you appreciate life and realize how trivial some of the things we worry about really are. It also makes !
you appreciate all of the support from family, friends, co-workers and even complete strangers when they learn what you've been through. And I've met some wonderful survivors and their families who have become my very special friends. While I can't and don't ever want to forget what I've been through, there are times when it just doesn't seem like all of this could have really happened to me because most of the time I feel so great...actually better than I had even before the cancer. So, do not ever give up hope.....there are so many of us that are living proof that you can survive this.

Cathy G., Alton, IL  2/1/06

My mother is still fighting her cancer but her story should give people a lot of hope. When she was first diagnosed, I read these PanCAN inspirational stories looking for one that resembled her situation, searching for hope. I never dreamed at that time I would be sitting her today writing about her. This is her story.

While on vacation in the summer of 2004, my mother found she was very tired and not feeling well. She also noticed her skin seemed to be getting yellow. When she finally felt too weak to ignore her symptoms, she found a doctor to see. He did some initial tests but told her to fly home immediately to see her doctor. The next day she arrived home and was sent directly to the hospital for admission. She was almost green with jaundice. We soon learned that she had a tumor blocking a bile duct thus causing her jaundice. She was given a stent to help relieve the jaundice and give her strength back. But, the diagnosis was grim. She had a malignant tumor on the head of her pancreas. My mother was also diagnosed with diabetes a year earlier. She had it completely under control through dietary changes and was horrified when her numbers were so high through this ordeal. When she visited her primary care doctor to see what she could do about getting her levels down, he basically told her that she had “bigger problems to worry about” and to not concern herself with the diabetes. We then went to an oncologist who gave us the worst news. The tumor was most likely inoperable and there was nothing they could do for her. Not liking these answers, we found other doctors to consult. A surgeon unfortunately confirmed that the tumor was inoperable in that it was wrapped around the portal vein. However, he suggested chemotherapy as a way to shrink the tumor off the vein so that surgery may be an option. My mom was very opposed to surgery as the Whipple procedure is entirely daunting. However, looking at her options, she was willing to consider it and start chemotherapy in the hopes of being a surgical candidate.

We then found a wonderful oncologist that offered an entirely different view of the situation than the first one we had seen. He suggested a round of chemotherapy for 3 months followed by a CT scan to see how things were progressing. My mom began this in November, receiving intravenous drips 2 days in a row every 2 weeks for eight weeks. It made her progressively very ill. However, the first CT scan in December showed the tumor had shrunk! Our first good news. Despite the horrors of chemotherapy, at least there seemed to be payoff. My mom had 2 more cycles like this. Her illness came on stronger and lasted longer each time but with the CT scan results, it seemed worthwhile (says her daughter) in that the tumor continued to shrink. By April, she could no longer tolerate the chemo regimen as it was beginning to give her permanent numbness in her fingertips and toes. She also wasn’t sure she could endure it any longer emotionally or physically. At this point, her oncologist decided they couldn’t continue with it. She was switched to an oral chemo to be taken in the morning and evenings, 2weeks on, 1 week off. We were all very nervous at what the change in treatment would bring. Her first CT scan after 3 months however showed a continually shrinking tumor. We were once again amazed.

It is now January of 2006. My mom continues on the oral chemo. She received CT results this month and the doctor said all that is present is a glow around where he knows the tumor to be. If anyone else was reading the report, they wouldn’t know there was cancer there. He is suggesting another 8 weeks on the chemo and then taking a break from it altogether to give her body a rest. They will of course continue to monitor the situation.

Needless to say, it seems a miracle to us. I wanted to share our story because regardless of how grim things seem, and what doctors may tell you, keep up your hope because anything is possible. And most importantly, always get a second opinion!!

Dawn E., New York, NY  1/10/06

In March 2005, I was diagnosed with pancreatitis. Further tests revealed a tumor in the body of my pancreas, which was later determined to be adenocarcinoma. Surgery in June removed the tumor, but not before the cancer had metastisized to my liver.

I entered a clinical trial at the Mayo Clinic in Rochester. Unfortunately, it failed to provide any benefit. Then the search began, because, at age 49, I was determined not to let this cancer get the best of me - I didn't care how hopeless the survival numbers appeared to be.

I heard about another treatment centers and began treating there in September.  Now, as of December 28, 2005, my CA19-9 blood markers have fallen from 5400 to 533, my CT scans show no progression, and even a hint that the liver lesions are regressing.

What has gotten me to this spot? Loads of positive belief and energy, support from friends and family, and great medical treatment. You have to keep searching for the treatment that will work for you, find the doctors who share your hope and desire to fight, and believe that you will be on the good side of the statistics.

Though the initial clinical trial didn't work for me, I know this is going to be a fight I will have to continue for years to come. So I fully expect that I will, someday, participate in another trial - to help myself and all the others who suffer from pancreatic cancer. But it's just a part of survival and it's worth every bit of effort, fatigue, pain and nausea. Hang in there, you can do it too!

Nancy H., Hibbing, MN  12/28/05

In February, 2006, my husband will have survived pancreatic cancer for 8 years. 

A very swollen left leg led Ross to the first of many doctors in 1998.  Tests showed blood clots caused by a tumor in the tail of the pancreas. Surgery was successful, but he had stage III pancreatic cancer.   When the first oncologist painted a very bleak, dismal prognosis, we sought a second opinion.  That doctor gave Ross a ray of hope when he said that a small percent of pancreatic cancer patients live 5 years.  My husband decided that he would be one of that small percent.

These almost 8 years have been very difficult at times.  There have been surgeries, radiation, many tests, multiple rounds of chemo, and more blood clots with which to contend.   As predicted, the cancer mestastisized to the liver less than 2 years after the original diagnosis.  Ross has lived with stage IV pancreatic cancer for 5 years.

Several times during treatments, Ross was being given 3 chemos at the same time.  His last treatment was 1 1/2 years ago. We know that there are 25-30 tumors in his liver due to an attempt to do thermal ablation. At this time, the protocol is to keep watch on those tumors and begin more treatment when they begin to grow again.

Ross has an outstanding support group of family and friends. He continues to work full time as a minister to senior adults and does pastoral care to those in hospitals, nursing homes, and retirement facilities. He is an inspiration to many people. Ross realizes that he has been blessed immeasurably.

Suzette R., Mansfield, TX   12/31/05

In late July 2004 while on Company business-related travel, I experienced nausea and other symptoms while flying to Florida on a Sunday afternoon. Between the airport and the hotel, I stopped and picked up over-the-counter medicine for the symptoms. I took the medicine as directed and there was no relief after the recommended period. On Wednesday, I walked into a health facility in Cocoa Beach without an appointment to see the first available doctor in the clinic. I was sent to a treatment room to wait for the doctor. When the doctor entered the treatment room, he immediately asked me to turn my hands over and show him my forearms. He then told me that I was jaundiced. In the next few minutes he gave me a thorough examination, asked me quite a few questions, and recommended lab work and a CT scan. On Thursday I went and got the lab work started and got the first of many CT scans to follow over the next year.

On Friday morning, the doctor’s office advised me that the test results were complete and the doctor wanted to talk with me that afternoon. By 1:30 that afternoon, I had been advised that there was a growth on my pancreas that was most likely a tumor that was blocking my bile duct and I needed to immediately check into a hospital for additional testing. When I reminded the doctor that I did not live in Cocoa Beach area and wanted to go back home to Houston for additional testing, he gave me copies of all the lab work and the CT scan images to bring home. This wonderful physician was the first of many blessings that have been bestowed upon me and my family as a result of the pancreatic cancer.

That afternoon, I again went to the insurance company website - this time looking for a specialist. Found one that was associated in Houston and got an appointment for Monday afternoon. Well . . . three weeks and two endoscopic procedures later I had a bile duct stent and excellent ultrasound pictures of the tumor on the head of my pancreas. Then came the surgeons – yes plural. I needed both a Whipple Procedure and a replacement of the portal vein. On September 24th, the surgical team performed the 12 hour Whipple Plus: half the pancreas, one third of the stomach, gall bladder, portal vein, and duodenum. These wonderful doctors and staff became the second blessings of my bout with pancreatic cancer. Due to infection and blood clots, I returned to the operating room twice during my long stay at the hospitall.

By January 2005 I had recovered from the surgery to the extent that I could start the radiation and chemotherapy chapters of the battle. At the end of January I started simultaneous daily radiation along with 5-FU (continuous infusion), Cisplatin (weekly), and Interferon (three times weekly). This was to last five weeks, but I had to be hospitalized and only made it through about 4 weeks of the triple doses of chemo. After a few weeks off the radiation, I started the next five week round of 5-FU. Then five weeks off followed by another five weeks on 5-FU. I was able to work part time during the third round of chemo, which ended in June 2005. By July I was back at work full time and had my first check-up in August. On August 24, 2005 my oncologist told me that I was cancer free. I will follow up with three month check-ups (blood work and CT scans).

Which gets me to the real blessings of my pancreatic cancer experience – faith, family, friends, co-workers, and church family. Winning the fight with cancer is about attitude. I am blessed with the most unbelievable support group that makes it very easy to fight. Every day of the past year I have been reminded of all the people that care for me and need me to fight for them as well as myself. So, I am very excited to get the opportunity to share my story about both my battle with pancreatic cancer and how much good can come from such an evil disease. My prayers are that all of those who have blessed me with their prayers and support will be rewarded for the good they have done.

Tom W., Deer Park, TX  10/19/05

In August of 2002, I turned 50 years old. Life was good. I had been married for 30 years and three beautiful adult daughters and one wonderful son in law. Being a dance studio owner and teacher, I always prided myself on my good health.

Toward the end of August, I found myself tired and exhausted. Then I started itching all over my body. Nothing would give me relief of the horrible itching! Then my urine turned tea colored. I told myself I just needed to drink more water. Silly me. At the urging of my family, I saw my GYN doctor, as I didn't even have a GP doctor. He insisted that I have blood work done immediately. He took me under his wing and then informed me I had to have extensive tests done ASAP and referred me to a GI doctor. I live in a little town, Bullhead City, 90 miles outside of Las Vegas. So after my GI doctor evaluated CT scan, ultra sounds, ERCP findings... I was given the news that I had to go elsewhere for help, as no one performed the Whipple Surgery in Bullhead, which was my hope for a cure. Fortunately, my cancer was contained to the head of the pancreas so I was a candidate for the Whipple.

My dear sister, Genene, (who has since been at my side for all surgeries and treatments) and I traveled off to another hospital and I met my surgeon. The very minute he walked into the room I had a feeling I was going to be okay. When I asked him if he was sure "it" was cancer, he told me he was 99% sure. I said, "can I be the 1%?" He then laughed and said, "A positive attitude like that will be a big part of your cure". It was then and there I looked at my sister and brother and said, "I can beat this... cancer picked on the wrong girl".

Three weeks later, I had an attempt at the Whipple. Needless to say, when the surgery was aborted 90 minutes into the surgery due to the tumor being wrapped around a major artery, we were very worried. The doctor again gave us hope. I was told that I could possibly get a second chance at the Whipple, but it would take time. At the hospital, I met the medical oncologist. He came in and talked with my family about a Clinical Trial Study that I was qualified for.

The week after I left the hospital, I had a port installed below my right sholder. Two days later, I started my weekly chemo treatments of Gemcitabine "Gemsar" and a daily dose of Tarceva. My treatment plan was 3 weeks on, 1 week off, 3 weeks on, 8th week, CT scan & chest x-ray. This was followed for the next 10 months. I knew that traveling weekly from Bullhead City to Los Angeles would be difficult, but I embraced the opportunity to get to be with my aging parents and sister and brothers, while I was in the Los Angeles area. Not to mention knowing I was in the best of care with my doctor.

Around January 2003, I returned to minimal teaching at my dance studio. It was rough. I was would vomit a day or two after treatment, but by the third day, I could drive myself back to Bullhead City and try to maintain a "normal life".

At the end of July 2003, my husband brought me a copy of my recent CT scan. I'll never forget seeing that copy saying there was no sign of the cancer! At first, I thought, "If it's not there, I won't have to have the Whipple". After meeting with both doctors, I knew the Whipple would be my best chance of curing the cancer for good . Thank God, for my surgeon and the second attempt. The Whipple was performed performed on Sept ember 6, 2003. All my tests came back clean, the original cancer was still there inside the head of the pancreas, no bigger than the size of a head of a pin.

I just passed my 3rd Anniversary of my cancer being discovered and my 2nd year since the Whipple. I did not have to have any chemo or radiation. I'm truly blessed and still consider myself a miracle. Faith lead me to the right people - the right cure.

I now have another great son in law. I am also now the proud Grandmother of two grandsons, a granddaughter and a new grandson on the way! I must say there was a time just not to long ago I was afraid I would not see all my daughters be married or even know how great it is to be a grandma.

The best doctors, a supportive loving family, a positive attitude and everyone's love is all part of the pancreatic cancer cure. It's a tough battle but a battle that can be won. Life is wonderful!

Denise S., Bullhead City, AZ  10/13/05

My friend Kim is amazing and she's a rarity. She's also a pancreatic cancer survivor. Hopefully, her story will help to inspire others. I know that she is a source of constant inspiration for me.

One morning on April 30 th of 1997, Kim woke up and realized that she needed to go to the emergency room. She was in pain and she knew that something wasn't right. At the emergency department they identified a mass, admitted her and scheduled her for surgery. In surgery they identified a cyst and took a sample for the pathologist. She recovered quickly and left the hospital in a couple of days. I remember that first hospital room - it was pink. It was only the beginning. Kim would spend many nights in hospital rooms over the next several months.

I went with her to her doctor's appointment to get the pathology results. Her doctor told us that she had pancreatic cancer. I just held her and we cried. We cried for a long time. Kim scheduled her next surgery. They told her she'd have a Whipple procedure. She very patiently tried to explain what a Whipple was - but I'm still not sure I understand. This time she stayed in the hospital for weeks. Her sister, her mom and I traded off staying with her at night. She'd gotten so tired of getting stuck with needles all day that we would climb in bed with her at night and just hold her. That's when I realized how important the human touch is for healing.

She finally came home, but she just didn't get better. It turned out that something was leaking inside and she had to go back for a third surgery. There were three surgeries that summer! It was a very long summer. Although she was sometimes a little on the cranky side, she never stopped being Kim. She got through it for her kids (aged 10, 9 and 3 at the time), for her family, for her friends and because she had to.

After recovering from that summer, it took her a year to regain her weight, Kim went back to school and finished her nursing degree. She also has added one more miracle to her family - her youngest daughter is now two years old. She is holding her family together and successfully raising four kids. Her eldest two children are now entering college.

Kim's doctor told her that she is a "rarity." She was 27 years old when she was diagnosed. She had no history of bad habits (no smoking or drinking) although she doesn't eat as healthy as I would like her to. She was not the typical pancreatic cancer patient.

Last weekend, we went to the PanCAN Walkathon. Kim was the youngest survivor there. Kim is eight years cancer free and although she was recently diagnosed with diabetes, I'm sure she will handle this new challenge with the same strength she's shown through the rest of her life.

Her doctor is right. Kim is special. Kim is beautiful and she's an inspiration to me and all that come in contact with her.

Anne E., 10/16/05

I went to my internist on December 19, 2002 with complaints of an upset stomach. I had been on business travel to Mexico several weeks before and was sure that I must have picked up a "bug" and that I was only a shot or pill away from felling better. My doctor said that I looked jaundiced and that he wanted to run some blood tests to check on my liver functions. He said that he thought that I might have hepatitis.

The next day he called me to say that I did not have hepatitis, but that he wanted me to have a CT scan that day. By the time that I arrived home from the scan my phone was ringing and it was my doctor. He said that I had a mass in my pancreas and that he wanted to come to my home and tell me more about it.  He came and met with me and my wife and my parents and explained that I had a tumor in my pancreas and that it might be a candidate for an operation called the Whipple Procedure.  He had also taken the liberty of setting up an appointment for me with a surgeon for the next morning.

We met with the surgeon the next day and he explained the procedure and we scheduled the operation for the day after Christmas - December 26, 2002. This was good because I was anxious to get the cancer removed, but it also gave me a few days to reflect upon what was important in my life and gave me time to spend with my wife and our three daughters and my extended family and friends.

Ten days after my surgery, I left the hospital.  I returned twice due to complications.  First I had bleeding in my stomach, which they fixed, then I had leaking of lymphatic fluid, which made me swell up like a balloon.  They got that to stop and drained the excess fluid.  My final return was for an infection that I assume came from the repeated draining of the excess lymphatic fluid.  I went home a weak 170 pounds when I normally weigh 195. 

I then embarked on a chemo program of Gemzar and Cisplatin. I would go every two weeks for three months when I broke for 29 days of radiation and then another three months of Gemzar and Cisplatin.  My CT and PET scans continue to show no evidence of cancer. I have blessed and an thankful for each day.  I have also taken three months of Erbitux and three months of Iressa in an effort to target the Epidermal Growth Factor Receptor (EGFR) that was expressed by my tumor.

I am now 45 years old and live a normal life with the appreciation of every new day. I hope that others who read this will keep a positive attitude, a strong faith, and remember that each person is their own statistic and that they also can beat this difficult cancer.

Howard Y., Atlanta, GA  7/12/05

In Mid-March 2004, while at work, a friend told me I had yellow eyes. I made an appointment with my HMO that evening. It took me almost 30 minutes to convince the doctor I was not shooting up drugs or drinking a case of beer a night.   The doctor called me at home at 9:30 pm, well after office hours, telling me I had an ultrasound scheduled for Monday.   The ultrasound showed what looked like a gall stone blocking the bile duct, an endoscopic procedure was scheduled for the next day.  The endoscopic procedure showed a malignant 3cm tumor from the pancreas blocking the bile duct.  Within an hour of this diagnosis, I met with the head of the surgical oncology department and my Whipple was scheduled for the following Monday.

All this after starting a new job 2 1/2 months before as a military contractor.  After the Whipple, complications and 5 weeks in the hospital I went home for 2 weeks and went back to work.  Between June and November I went through 7 weeks of radiation and 7 sessions of 5-FU chemo.   Nine weeks after receiving my last chemo and losing 100 pounds, I was in Iraq supporting our soldiers as a military contractor at FOB Kalsu. I am now back home and last lab test and CT scans show no signs of anything.  I am a firm believer in optimistic pessimism, hope for the best but prepare for the worst.  

And now I can say, there is life after cancer.

Michael D., Killeen, TX  7/1/05

In February 2004 I was diagnosed by CT scan as having a 3mm tumor on the head of my pancreas and my CA 19-9 was 1700. I weighed about 133 pounds. With my daughter and her husband's help we found a team of doctors near my daughter's home. My Whipple was scheduled for March and we were hopeful it would be a success. But my tumor was found to be encroaching on a major blood vessel, so it was discontinued - major disappointment. A jejunostomy was performed instead, which would help me eat and digest food better. After 12 days in the hospital, I went home to my daughter's house to recover. I was very depressed and lost 20 pound due to vomiting.

In April, I started chemotherapy - hopeful we'd shrink the tumor away from the blood vessel so we could try the Whipple again. I started with 5-FU on a 24 hour a day drip. My CA19-9 was 2100. By May my CA 19-9 climbed to 4800 but my weight was up to 124 lbs. By June my hands and arms started to itch a lot and my CA 19-9 was 4900. I found out soon after that the itchiness was due to a blocked bile duct.

By late June, the CA 19-9 was at 5000. My doctor finally changed my chemo to Gemzar (1200) and Taxotere. The plan was to go once a week to my doctor's office to have the drugs infused through my port-a-cath.

By October, my CA 19-9 had dropped and remained low, and a CT scan revealed that my tumor had shrunk by 50%! I saw my surgeon and he agreed to try the Whipple operation again. The surgery was scheduled for November. I built my strength up and gained a little weight, and on November 22, I had the Whipple procedure - and it was a success! I recuperated well and was released nine days later. It took about a month to get my appetite back. My family celebrated a late Thanksgiving with me and my husband. We had a lot to be thankful for. Life is precious.

Even though I had a lot of setbacks, pain and infections, I never thought that I was not going to have the surgery and that the cancer was going to be cut out of me. I just believed that all would be fine after I had the Whipple.

My husband and my daughter constantly give me the encouragement I need - and never falter in their love and understanding. They help give me strength and the will to fight. Others also help. My son is always positive and encouraging. And friends become closer through visits, cards and phone calls.

I would have to say, the key to keeping my spirits up throughout this ordeal, is the love and support of my family and friends. My husband, Jim, has been by my side nearly every moment of each day. He even stays in my hospital room with me all night - every night. My daughter and her family offer their home to us. My daughter, Debra and her husband Charlie are constantly researching the best care possible for me. When we moved into an apartment up the street, my daughter visited us nearly every day - bringing food, and best of all - my wonderful grandchildren - Michael (age 6) and Grace (age 2) whenever I was up to it. Family, friends and even strangers prayed and continue to pray for me from all over the world. My faith has kept me strong.

I am still fighting. My CA 19-9 is near 300, but I have bounced back from my last hospitalization. I'm having tests done to find the cancer, so that we may treat it.

I pray for all who are struggling with this disease. I'll keep you posted on my fight.

Bev S., Banning, CA  6/13/05

In February, 2003, my Dad was 76 years old. He is very active, and does not look or act his age. He has been eating dinner with my family nightly, since my Mom died in 1992. When we sat down to eat, that particular night I thought my eyes were playing tricks on me. He had, literally overnight, turned very yellow. I was immediately concerned, and begged him to see his Dr. which he did. A CAT scan, and two endoscopic procedures later, we received the devastating news that he had a locally advanced tumor in the head of his pancreas. They tried to do the Whipple procedure, but the tumor had started to wrap around the main artery, and was not resectable.

Daddy underwent one six week round of radiation in combination with 12 doses of both gemcitabine, and cisplatin This was followed with six weeks of just gemcitabine He finished his chemo in September, 2003. For about six months there was no change in the size of the tumor, and signs that tumor had spread. Then the tumor began to shrink, and as of May, 2005, is not visible on the CAT scans. Dad's cancer markers are down to 67. He still has three month checkups, but only has CAT scans done every six months. He just celebrated his 79th Birthday last month!

I am so grateful, and thankful for the support I have received from PanCAN that I decided to start my own team hope affiliate here in North Central PA. I am truly blessed, and my Dad is living proof that there is always hope!

Karen T., Mill Hall, PA  6/14/05

My name is Lydia - I am 38 years old and I am a pancreatic cancer

survivor !!!!!!!!!!!!!!!!

I was diagnosed in June of 2001, and I was 35yrs old when I had the whipple procedure along with radiation and chemo (5-FU).  I have 2 beautiful children, ages 5 and 7. 

My husband and I just celebrated our 8th wedding anniversary.
April 20th I will be turning 39 years old...WHAT A MIRACLE!!!!!!!!

Life today is a dream I wish not to wake up from.

Lydia R., Chicago, IL  4/2/05

In the fall of 2003, as I was training to run a marathon, I began to experience slight back pain. My doctor had good news. Since he didn't have to press very hard before I felt pain, it was nothing to worry about. He prescribed Bextra and I finished my training and ran the marathon in January 2004. Life was great.

After the marathon, I continued to feel back pain. Additionally, I didn't want to take Bextra for the rest of my life - so back to the doctor I went. Long story short, I was diagnosed with pancreatic cancer on 8/5/04. I couldn't believe it. I was 46. I was a professional with a great career. Additionally, I taught spinning classes at a national gym. I was in good shape, I always ate right. I drank rarely. I had none of the typical pancreatic cancer symptoms. Why me??? What did I do to deserve this????

Since my diagnosis came from a highly reputable cancer center, I felt there was no where to turn for a second opinion. So, I stuck my head in the sand, trusted my doctors, and quickly started the treatment program.

After completing chemotherapy and radiation treatments, I had my Whipple procedure on 11/30/04. Needless to say, it will always be a memorable day for me. After the operation, the next two months were not good. Fortunately I have a very good support system. They put up with a lot during that time. It was very easy to slip into a very negative attitude. My digestive system didn't seem to want to kick back in. I was convinced my life would never be the same.

However, all of a sudden, I started to feel better. My attitude turned around, and I once again started to feel hope!

I am happy to say that today (3/14/05) I am completely back to normal! I am teaching my cycle class again. I am training for a 180 mile bike ride from Houston to Austin in April. In fact, I rode 48 miles yesterday. I have my first follow-up CT scan in April, but my plan is to continue to beat this ridiculous disease!

My advice for anyone going through this:
   - Keep your faith. There will never be a time in your life where you

      need to have it as this.
   - Never stop praying for a miracle. Even if that miracle is in the form of

      an 8 hour operation.
   - Remember that there ARE better things in store for you.
   - Remind yourself that you are the same good person that you were     

      before the first cancer cell entered you body.
   - Force yourself to go to the movies frequently - and ONLY see

      comedies.  Now is the most important time for a laugh.
   - And MOST importantly, DO NOT read all of the gloom and doom articles about pancreatic cancer on the internet!

We WILL be the exceptions!

Keith H., Houston, TX  3/14/05

My mom was diagnosed with pancreatic cancer January 2003. It started with just not feeling well and having some abdominal pain.  After some tests the doctors thought she just had gall stones.  My sister and I took my mom to have her gall stone removed, when the doctor told us it was a “tumor”.   I hate that word…..along with “Cancer”. At that point, I thought my life was over, I thought I would just lose my mom.  Well, when we realized she needed surgery, we went to a few local doctors.  Doing some more research, we decided to attend another hospital and found a great surgeon there.  My mom had the whipple surgery followed by chemo. It has been 2 years since her surgery and she is still receiving chemotherapy, but she is a fighter.

I am writing this because I enjoy reading stories about individuals who fight and beat cancer.  Everyday is a struggle, some days are great where I can’t even tell my mom is sick.  But some days are bad, they are painful.  I have learned that you just have to have faith and hope.  I believe that one day we will fight cancer and become disease free.   Every time my mom gets a scan or has her blood markers checked I get nervous, but I am learning that prayer and hope are a lot stronger than any statistics.

Elbra, Fullerton, CA  3/7/05

My husband of 33 years was diagnosed with stage IV pancreatic cancer on August 14, 2003.  In October he went into surgery in hope of getting the Whipple done, when the surgeon verified the lesions on the liver and stopped.

After going for a second, third, seventh opinion, we ended up in Brooklyn, New York at the Lutheran Hospital, where the doctor gave us hope and started my husband on the G-FLIP chemotherapy.   And the doctor delivered.  We stopped the treatments on December 22, after the CT scan showed no visible sign of cancer and his CA19-9 is down to 18.  He is working, traveling, enjoying life, had to buy larger pants, having blood tests every month and CT scan every 3 months.

Thank you to our doctor, our friends and family, and a long line of people who helped along the way.  This is not a journey what one can take alone.

Vera K., Ottawa, Ontario, CANADA  3/2/05

I got a call on Thanksgiving weekend 2004 that biopsies of my mother's bile duct had come back positive for malignancy.  She underwent the Whipple Procedure on December 7, 2004 at Zale Lipshy Hospital in Dallas.  The tumor was successfully removed, all her margins were clear and surrounding lymph nodes were clear.  She went to MD Anderson in Houston, to get a second opinion on her course of treatment.  She is scheduled for chemo and radiation.  She was given some additional information in Houston.  She will go home to Dallas and, together with her doctor, decide the treatment schedule.   She mentioned 5-FU and Gemcitabine.

My mother is 59 years old, mother of 2 and grandmother of 5.  We are hopeful that once chemo and radiation are completed she will make a full recovery and remain cancer free.

Angela H., Lithia, FL  1/25/05

In the summer of 2004 I lost weight.  Having always been thin and very active, I just thought I was doing too much swimming.  I went to my internist who suggested a CT scan and that is when the tumor was found in the head of the pancreas.  I had the Whipple procedure at Memorial Sloan Kettering in November.  In January I was a candidate for a Phase II study being conducted there.  It consisted of six weeks of chemo, radiation, cisplatin and interferon.   This was followed by two more 6-week cycles of just chemo.   My last two CT scans were clear. I am feeling well, have gained weight and am back to as much exercise as ever.  Yesterday I thankfully celebrated my 72nd birthday!

Marilyn W., Glen Rock, NJ  1/23/05

Well, It's been over a year now....

Last September I was diagnosed with pancreatic cancer.  I ended up having surgery at Mayo in Rochester, MN and have completed chemo this past July at the University of Michigan.  After reading of the devastation of the disease, I can only feel that all the folks praying for me made the difference.

I am 44 years old and have two teen boys. One is a senior this year and one starting high school next year. I never would have believed that I would be around a year later after all I read about the disease.  But here I am.  My wife and I are planning to attend PanCAN's Symposium this year and I have already spread the word that for Christmas, we only seek donations to this wonderful cause.

For those of you that are have just been diagnosed, I give the following advise. Ensure you get multiple opinions.  My first surgeon would not perform the surgery, so I found one that would.  I ended up using an excellent surgical team that had performed the Whipple for years at hundreds a year.  I ended up leaving the hospital after only seven days. Get post surgery advise from many as well, I am using two different facilities in different parts of the country.   My treatment has been a combination of the best minds I could find. And finally, pray and ask for prayers, I have had folks I have known all over the world pray for me and when I have had treatments, I can tell there is a special presence with my wife and I.

Keep the faith and never, never give up....

Bryce D., Canton, MI  11/10/04

I am a 65 year old female and was diagnosed with pancreatic cancer in March, 2004.  After six months, I am now cancer free.

My story begins in my primary physician's office, as she was removing a skin cancer on my arm.  I mentioned I had some acid reflux symptoms and asked if she could prescribe something to ease them.  After a brief exam, she ordered blood work.

The blood work came back suspicious, so I went in for ultrasound test and then CT scan. The following day she called my husband and I into her office to deliver the bad news that there was a tumor on the head of my pancreas. It was blocking the liver bile duct , causing me to be jaundice and have itching.

After seeing the local gastrointestinal physician, I was sent to Mass. General in Boston for endoscopic surgery.  A stent was placed in the bile duct to relieve my symptoms. It was recommended that I have surgery to remove the tumor. On April 22nd , I had a whipple resection.

According to my doctors, due to 2 years of intense exercise( toning, stretching and aerobic, along with 1-2 miles walking daily), my recovery was speedy. I was home in 5 days and amazing my doctors at my two week check-up.

After learning that the tumor was cancer, my doctor recommended connecting with a local oncologist near my home. I started treatment of radiation and chemo(5-FU) in June and finished up July 29th. I lost 25 lbs.,from 122lbs. And have not been able to gain any weight even though my appetite has returned.

I am on Viokase-8 and Zantac, but still cannot gain. Otherwise, my energy level is good and I am now back to my previous exercise routine.

Just wanted to tell my story so that others know there is hope for recovery. I know there will always be some concern that the cancer will return, but my attitude is positive. I am thankful that I was led to good doctors.

Karen M., Manchester, ME  11/5/04

Two days ago I celebrated my 52nd birthday.  What a miracle!

I never thought that I would be glad to be getting older, but this year I sure am.  March 16, 2004 (7 1/2 months ago), I had the Whipple procedure.  The doctors weren't exactly sure what was wrong with me until my surgery, when they found an acorn size tumor in the head of my pancreas.   During my surgery, radiation was performed.  After surgery, I had 7 weeks of radiation and chemo (5-FU). 

I was pretty sick during my treatment, but I made it through and I feel better now than I have felt in a long time. The hospital where I received my radiation is 1 1/2 hours away from my home, so my husband and I stayed in a wonderful place called Hope Lodge. I don't think that I could have lasted if I had to make that trip everyday.  In my area, there is a meeting called "Life after the Whipple" that meets 3 times a year.   At the meeting, a nutritionist told us about the benefits of a balanced diet by choosing foods from the 5 food groups.   I didn't gain any weight until I followed her advice. I never thought that I would say this either but I'm glad that I gained 10 pounds. 

Each day, I am thankful that I am alive and cancer free.

Janice C., Burghill, OH  10/31/04

On December 31, 2003 I started to have terrible pain shooting from the left side of my back around to my stomach.   I went to my primary physician who prescribed medication to relieve what he thought was a infection in my stomach lining. The pain went away for a few days then returned.

After a couple months of off-and-on pain, he sent me to a specialist.  She scheduled me for a colonoscopy, which only produced a few harmless polyps.  The pain kept recurring (most of the times it would start just as I settled in for a good nights sleep.   The pain was so severe that I thought I was having a heart attack.  In October I noticed I was turning yellow and itching profusely.  My specialist determined that she could do no more for me and sent me to the medical center. 

I went and was told I was jaundiced and the doctor highly recommended to me to stay there and let them run some tests.  Thank goodness I listened to him because that night my tempurature rose to 104 degrees and the pain was severe.  Then I met another doctor... the man I owe my life to. Through various testing it was determined that I had pancreatic cancer. and a surgical procedure called a "Whipple" was needed. 

I was sent home for the Thanksgiving holiday, with surgery scheduled for December 2nd.  My Whipple took 10 hours and a tumor the size of a golf ball was removed.  They also removed my gallbladder, duodenum, and part of my pancreas.  I was in the hospital for 7 days. 

Then I started an aggressive radiation program for 7 weeks, followed by what was to be 5 weeks of chemo.  After 2 weeks of chemo we had to take some time off because my blood counts went very low.  I have had two CT scans from neck to toe and thank goodness there are no tumors! Because my doctors have determined that they can no longer give to me any more chemo, we will be having CT scans every 6 months. 

The reason I put my story into words is to offer hope to anyone reading this.   I hope these few words can give you encouragement and solace.  Remember all of us who have written these stories and have gone through the same initial shock when we heard that we had cancer.  We are all with you in thought and prayer...keep the faith!

John M., Amsterdam, NY  9/28/04

In March 2000, I had pain, as if someone was shoving a broom handle through my ribs.  It was unbearable, so I went to the doctor.  He said, "Take these pills."   I told him that I did not come to see him for a prescription.   I knew I had a bad problem inside of me and I wanted him to find it and fix it. He decided to run some tests and sure enough he discovered I had pancreas cancer.

I won't tell all the cancer measurements, however I will say it was contained in the head of the pancreas. It was in April of that year that I was diagnosed and May 18 I had a Whipple procedure.  I spent fifteen days in the hospital, followed by chemo and radiation for six weeks. I had to stop treatments early because I had blood clots in both lungs and my intestines were swollen.  

It's now been 4 years and 3 months and I'm free of cancer.  I had not even an inkling of an idea of how lucky a person is to not have to face all the challenges of beating cancer.  I now know first hand!  I still have a lot of pain and fatigue, but hey, I'll manage.  I feel like the key to surviving these type of issues is to be very persistent with getting the right tests, diagnosis, and treatments.

Stephen C., Murfreesboro, TN  9/12/04

I was diagnosed, after many procedures and tests, in January 2003 with pancreatic adenocarcinoma. My final diagnosis was made at the Mayo Clinic and at the time, had not metastasized. The physician at Mayo thought it could be resolved with surgery.  By the time I had surgery on February 5, 2003, it had spread to the liver and the surgeon was unable to remove the tumor. My husband, family and I were told that I had a few months to a year to live. As you can imagine, this was devastating.

We met with an oncologist, who ordered a baseline CT before I started chemotherapy.  The CT scan showed about a dozen "cancer sprinkles" on my liver, which was no surprise to us. He started me on Gemcitabine and Docetaxel once a week for two weeks and then one week off.  I took the chemo very well, thank goodness.

I had a CT scan done on May 20, 2003. The results showed my liver starting to clear.

I had a CT scan done on September 11, 2003 and the results showed my liver was clear.

My oncologist ordered a PET scan for the tumor. The first PET scan was October 9, 2003 and the results showed a spot in the right abdomen consistent with viable tumor. The second PET scan was done March 8, 2004 and the results showed same spot. The third and last PET scan was done July 26, 2004. Results showed no evidence of residual or recurrent tumor.

It's been a long haul to get here, but here I am. I want to thank my husband for always being there for me and with me and for always BELIEVING and NEVER GIVING UP HOPE.  Also to my family and friends for their prayers and support.

Rita J., Peoria , AZ  8/4/04

In 1998 I was diagnosed with kidney cancer, thus my left kidney was removed, as well as a couple of lymph nodes.

In 2002, I wanted to sign a contract with a US company and move here from Europe . To make sure everything was fine I had a full physical with CT scan March 2002 - clean bill of health. In May of that year, I experienced severe stomach pains and nausea. After a few days in a private hospital in Zurich I was diagnosed with pancreatic cancer. I was given just 3 months to live!

I knew one option was to undergo the Whipple procedure and I was told that the surgery was not guaranteed to be successful. During surgery it became evident that entire pancreas was full of cancer. The surgeon proceeded to remove entire pancreas, spleen, gall bladder and bile duct and some lymph nodes.

The recovery from surgery was quite tough, but 8 weeks later I was out in my yacht sailing. Then I started the really tough period of chemotherapy; once a week for 6 months.

Since surgery, the only thing holding me back a bit is the constant monitoring of glucose levels and the balancing act with insulin. I have changed jobs after 21 years with one employer, changed career in to a different industry, moved across the ocean, working full time, climbing glaciers, sailing, roller blading - just enjoying life!

In June this year I passed yet another physical with all vital signs and blood tests showing up as normal. Thanks to a fantastically skilled surgeon, friends, church and an ever supporting wife - I am still here.

Dennie N., Cary , NC   7/27/04

Early April 2003 presented me with an ongoing bout of acid reflux which seemed unusual. I had from time to time suffered from acid stomach, but this did not feel usual. I immediately went in for an annual physical and my G.P. immediately became alarmed by my abnormal blood work showing off-the-chart liver function counts and abnormally high LDL and low HDL levels. At first assuming gall-bladder problems, she immediately referred me to a G.I. specialist who ordered an ultrasound and C.T. scan. The results were negative for gallstones, so an ERCP was scheduled, immediately preceded by the onset of jaundice.

A mass was found on my pancreas, but 7 needle biopsies were inconclusive. The biopsies brought on a severe case of pancreatitis within 48 hours. Following recovery an internal ultrasound found a growth on the head of my pancreas. With no other growths evident, I was immediately scheduled for a Whipple procedure which took place on July 1, 2003. The results of the pathology during surgery confirmed Pancreatic Cancer. The head of my pancreas was removed, and two additional "slices" were removed due to "dirty margins" with each removal. After 12 hours in surgery my wife was told that I had no more than 6 to 12 months remaining.

Upon my release from the hospital, my wife and I immediately began our education and search for the most aggressive therapy we could fine. We found our oncologist through referral and within 5 weeks of surgery, I began daily radiation treatments and once a week chemo of Gemzar and Cisplatin.

After 6 weeks of this regimen I was given two weeks to rest, then once a week high level chemo treatments of the Gemzar/Cisplatin combo for 4 more weeks. After a 4 week rest, I went through the first of what is now my quarterly follow-up blood workups and CT scans. To our great joy and fortune, my CA 19-9 count was 17, my CEA was 1.4, and the CT scan showed no evidence of remaining tumors. That was December 2003.

I just completed my third quarterly follow-up and my CA 19-9 was down to 14, CEA constant at 1.4, and CT scans were still clean. Of course I have had to re-educate myself on how, what and when to eat to appease my new post-Whipple anatomy, but I am now just past my one year survival anniversary and my weight has climbed to 160 from a low of 135 (pre-onset was 170).

No matter what, there IS HOPE. Don't be afraid to ask everyone in seeking information and inspiration. Your attitude will greatly influence your body, your doctors and your outcome.

Jeffrey R., Laguna Beach , CA  7/12/04

My story started June 2003. I would come home from work just real sick to my stomach. One Friday night I said to my son, "If I make it to Monday, I'm going to see a doctor." By Monday, I was as yellow as a school bus.

I'm going to skip to August 2004 and about 3 doctors and 50 tests later. I was told that I had gallstones and acute pancreatitis. They set out to do surgery to re-route some things and remove my gallbladder and possibly the head of my pancreas. They prepared us for the Whipple procedure, but after about three hours the surgeon called my family and told them that the pancreas looked alright and that they didn't have to do anything to it. He said that a stone had lodged in the pancreas, but it shouldn't be a problem.

I re-cooperated and even went back to work from October through December. Then in January 2004, the pain in my back and stomach became unbearable. I was then told in February that I had pancreas cancer.

I started chemo and radiation for six weeks in March. My CA 19-9 has dropped from over 2000 to 78 on my last test. I'm still fighting fatigue and trying to find foods to eat. I went from 155 lbs. to 99 lbs. Since treatments, I have gained weight and am now up to 122 lbs.

Keep the FAITH!!

Glenda P., Clarksville , TN  7/10/04

At the time of my diagnosis I was 26 years old. I am a healthy female with two beautiful children and a loving husband. This is my story...

On September 4, 2003 I woke up feeling a little dizzy and not like myself. I proceeded with my day and by mid-afternoon I finally took a shower. I felt like I had a knot in my stomach. There was a strange, annoying ache under my left rib. While in the shower I started feeling the area and felt a lump. My husband came home from work and I told him that I didn't feel good and that I was going to go to the emergency room. I told him not to worry, I just wanted to go by myself, and for him to just stay home with the kids and I would call later. When I got to the ER they ran urine test, and told me take a pepcid and mylanta.

After sitting there for about 2 hours they decided to do blood work and everything came back fine. They gave me an IV and told me they were going to do and ultrasound because they thought it could be my gallbladder. After I got my ultrasound they told me there was a mass on my pancreas and that is why I was feeling some discomfort. They admitted me into the hospital overnight so they could perform a CT scan. The CT scan showed a 6mm mass on the pancreas. I was released and referred to Johns Hopkins Hospital when my life was changed forever.

I did not know the seriousness of what I had been diagnosed with. I was young, healthy, and had no idea I had cancer. On November 4, 2003 I had 90% of my pancreas and my spleen removed. The mass was the size of a small grapefruit. That is pretty big coming out of me considering I am only 95 lbs. After the surgery the doctor informed my family that the tumor was malignant.

I was in the hospital for 5 days after my surgery. I had a great recovery. My family, friends, church, and people who didn't even know me extended their love and prayers to help us get through this tough time. I have to get a CT scan every six months to check for any tumors or growth or anything that looks abnormal. I am on a regular diet and no signs of diabetes. We are keeping our fingers crossed.

I am telling my story today because pancreatic cancer can happen to anyone. No matter what age, race, or gender. I knew nothing about the disease and I want to reach out to people and let them know that miracles do happen. Always follow what your heart tells you about your body. Since my surgery I look at life differently. I enjoy each day, relax, and don't sweat the small stuff. I have been given another chance. I am 27 years old now and I will continue to help others fight this disease.

To anyone who reads this please contact your State Representative or Congressman to declare November National Pancreatic Cancer Awareness Month. Thank you.

Jessica M., Milton , DE  7/6/04

In early January 2004 my wife, Linda, went to the doctor due to jaundice and severe itching over her entire body. After blood tests, ultra sound, cat scan and a liver biopsy my wife and I had our world turned upside down when she was diagnosed with phase 4 Pancreatic Cancer. With a great deal of fear and dispair I started researching this disease that I knew almost nothing about.  The one area where we were able to gain a glimmer of hope was in the testimonials on the PanCAN web site. I hope my wife's story will provide you with a reason to be hopeful too.

Linda is 52 years old and in relatively good health, except for an extra 50 pounds. Because her cancer had spread to the liver she was not a candidate for the Whipple procedure. This news was both a disappointment and a relief knowing the severity of the operation. On February 3, 2004 her doctor started her on a combination of gemzar and cisplatin chemotherapy once a week for three weeks, and then one week off. To our surprise, the effects of the chemo were not as bad as expected. She was easily fatigued and occasionally sick to her stomach.  But took walks every day and with medication and watching what and how much she ate, she was able to control her nausea.

We have been very fortunate with the extent to which her cancer has been impacted by the chemo treatments. Linda started with a CA 19-9 count of 11,700. We are very happy to report that on June 22, 2004 (approx. 5 months after her initial cancer diagnosis) Linda's cancer count was down to 27 and she was declared by her doctor to be in complete remission! He is very careful to remind us that she is not "cured", but this first battle with Linda's disease was won in a relatively short period of time.  It is our hope and prayer that the next battle will not occur for a long, long time.

Michael M., Long Beach, CA  6/26/04

On November 17, 2003 Ray, my husband of only 6 months, was diagnosed with adenocarcinoma of the pancreas. He was only 42 years old and otherwise very healthy. Symptoms started almost a year prior with a gradually worsening stomach ache. EGD and CT results performed in May 2003 were normal. Vioxx, an anti-inflammatory, relieved the pain for months until the stomach ache became severe and unbearable with pains radiating down his spine.

In early November he was hospitalized after persistent vomiting left him dehydrated. While in the hospital innumerable tests were performed. A needle biopsy was done on a "fuzzy" area in the pancreas found on a CT scan yielding results of pancreatic cancer. Furthermore, the doctors said that the cancer was inoperable and that by the time a person experiences this degree of pain it is usually too late. He was discharged from the hospital on a morphine pump for the pain and IV nutrition because he was still unable to hold any food down. He then started Gemzar chemotherapy and radiation. This was an aggressive and grueling 2 month treatment that caused unrelenting pain, persistent nausea and vomiting, and severe weakness. At the end of the treatment another CT scan was performed, the tumor appeared resectable!

Ray had a distal pancreatectomy and splenectomy on February 19, 2004. The amount of tumor found in the pancreas was only 0.8 cm and the margins were clear. We are all pleasantly astonished. The recovery has been long and tiring. Today his is blood glucose levels are normal and he is able to eat about half of what he used to. He is continuing Gemzar chemotherapy for 4 more cycles just to be safe. The side effects of the chemo alone are minimal and he is able to spend some time at his favorite pastime, golfing. Ray and I are still spinning from the whirlwind of the past 6 months and look forward to spending our 1 year anniversary in Paris .

Marisa S., Goleta , CA  4/28/04

I have been a member of PanCAN since my father, Vern, was diagnosed with pancreatic cancer in March 2002. My dad is 67 and was diagnosed at age 65, a few months after retiring from Ford Motor Company after 36 years of service. Of note, he retired to help us with his young grandchildren. Soon after, he was diagnosed with pancreatic cancer. This was a complete shock to our family. My dad had none of the known risk factors, as he was the epitome of good health. I am a registered dietitian in Ann Arbor and my dad always applied healthy eating principles to his lifestyle. He walked five miles a day and didn't smoke or drink. The night before his Whipple, he did 10 miles on the treadmill! His pathology confirmed stage III resectable pancreatic cancer. Next he was treated with Gemcitabine and Cisplatin. Then he underwent radiation while taking Xeloda (oral 5-FU). He remains cancer-free according to his CT scans and CA19-9 levels. We just celebrated the two-year anniversary of this diagnosis on March 18, 2004 .

Most notably, my dad completed the Disney marathon on January 11, 2004 . My brother and I ran with him and we all crossed the finished line holding hands. Isn't it amazing that someone who endured so much could be strong enough to complete a marathon? He truly is an inspiration. He continues to follow a healthy diet by aiming for 10 fruits and vegetables per day. He also consumes soy protein, omega-3 fatty acids, whole grains, green tea, nuts and other cancer-protecting foods. We have tried to incorporate nothing but functional foods into his diet. Today, my dad continues to walk and run and we are planning to do the Disney marathon again in 2005.

Lisa M., Ann Arbor , MI  4/2/04

My Aunt Linda was diagnosed with inoperable pancreatic cancer in August of 2003. The tumor was in her pancreas and wrapped around a main artery. She underwent 6 weeks of 5 different chemotherapy drugs along with radiation. It was a tough six weeks for her but she battled through with incredible strength.

Following the chemotherapy and radiation, a scan showed that the tumor was still there and hadn't changed. They gave us a 1% chance that it was scar tissue. We focused on the positives and were glad it hadn't grown.

This past Sunday (Feb. 22, 2004) my Aunt went into the hospital with extreme abdominal pain. She said she thought she was dying. It turned out she had an infected gall bladder. They sent her into emergency surgery on Sunday night to remove the gall bladder.

When the surgeon was in removing the gall bladder, he checked her pancreas. He said you would not have known by looking at it that she had pancreatic cancer. He also said he felt around and could not see or feel a tumor. He had studied her charts prior to surgery and knew exactly what he was looking for. There is no tumor.

My Aunt's oncologist delivered this great news to her with a smile on his face. This is good news! When he diagnosed her last summer, he told her that her chances were less than 10%, but with faith, friends and family, her chances went up.

We have hundreds of people praying for her from all different religions and backgrounds and in all of our churches. She has kept an upbeat and fighting attitude through this whole thing and said she knew her miracle was out there. She's been taking very high quality vitamins and supplements, drinking aloe juice every day, eating healthy, avoiding sugar, and she even saw a spiritual healer. All of these things combined with support and prayer from friends and family have made the difference.

My Aunt Linda beat breast cancer a few years ago. Her prognosis with this pancreatic cancer was just about as bad as we could have gotten. Now her tumor is gone. NEVER GIVE UP YOUR HOPE!

Christine B., Inver Grove Heights , MN   2/25/04

I am writing this for my husband, James. He was diagnosed with pancreatic cancer on January 24, 2003 . The diagnosis was not easy to come by. After two pathologists would not say for sure it was pancreatic cancer, his biopsy was sent to the Mayo Clinic. We were finally told that it was pancreatic cancer; a large mass in the pancreas.

We started Gemzar on February 3, 2003 . At that time CA 19-9 results were 30,928, with no apparent spreading of the cancer to other areas. James had the usual side effects from the Gemzar - loss of weight up to ten pounds. He was feeling pretty well under the circumstances.

Then James developed blood clots. The doctors told us he would not make it. He had to have eight pints of blood because of bleeding. During his stay in the hospital, we discovered he had three spots on different areas of his bones - they said the disease had spread. So we had 11 treatments of radiation for these. Then we started 5-FU in September when his CA 19-9 count was 55,000. After nine treatments and a horrible time with his treatment, James was sent home on January 16, 2004 .

After asking for a second opinion, we are now using Gemzar again. It is very east to be discouraged by this disease, but never give up hope! Also, remember that someone is always praying for you. We will continue to fight this disease as long as we can. We are thankful for every day. PanCAN has been such a great inspiration for me!

On behalf of James Y., Braselton , GA   2/2/04

I wanted to share my Dad's story with people to give hope where it seems hopeless.   My Dad went for a routine physical (which he hadn't had in 40+ yrs).   His doctor ran every test imaginable due to the fact he hadn't been checked in years.   After all, a CA-19-9 blood test showed a slight elevation, all other testing showed nothing.   My father had no symptoms of any illness whatsoever.   With a persistent doctor, he ran a CT and MRI, showing a mass on his pancreas but appeared to be benign or just hemangiomas.  

Two months later, another CA-19-9 blood test showed a tripled elevation.   The doctor referred him to a surgeon who proceeded to do a biopsy.   The surgeon approached my Mom, my sister and I and told us that there was no hope.   From what he just had seen my Dad should be an extremely sick man and there was nothing surgical that could be done.   He also said that there really was no need for an oncologist but if we wanted to speak with one he would refer us to one.  

With that, we went home with my Dad and prepared for the worst to come in the next coming months.   His life expectancy was 3-4 months.   After consultation with the surgeon and family doctor, there seemed to be no point in chemotherapy since my Dad's pancreatic cancer was metastasized to the liver.   The theory was that he wasn't presently sick, and taking chemo would only make him sick.  

I am happy to say today that being a stubborn Italian man that he is, my father chose to take the chemotherapy anyway as a way to at least "do something".   It is almost 5 months now and my Dad is still asymptomatic, he has not had one side effect from chemotherapy at all, and has recently had a CT scan.   The results shocked all of us, including the hospital where my Dad goes for chemotherapy.   His pancreatic cancer has not progressed at all, and the numerous liver cancer lesions have shrunk considerably.  

My Dad is now on a mission to actually LIVE his life.   My family did not expect to have my Dad around for any holiday this year but we have recently celebrated Thanksgiving and what THANKS we gave to have him at the table!  

Jean D., Philadelphia, PA,   12/10/03

I purchased the purple and lavender bracelet from PanCAN in honor of my husband, Steve. He was diagnosed with pancreatic cancer in the fall of 1999.

His symptoms stated with severe internal itching in April of 1999. He was treated with benadryl and then xanax, but neither relieved the itching. He had a CT scan and an ultrasound, which showed a mass on or around the pancreas. The doctors ordered an endoscopic ultrasound, which revealed nothing. My husband had been losing weight the entire time.

In September 1999, we were told to cancel our vacation. The surgeon wanted to do a Whipple procedure. After another endoscopic procedure, his Whipple procedure was scheduled for October 20, 1999. The surgery went fine and he did very well. Then, the chemotherapy and radiation started soon after the Whipple procedure.

Everything went well and in June of 2000, he had a PET scan, which showed no masses or tumors.

On September 12, 2003 we celebrated our 50th wedding anniversary!! I will wear my bracelet and be thankful that my husband is healthy and free of cancer.

Terry V., Akron, OH  9/16/2003

In December 1992, I had pancreatic cancer and had a Whipple operation.   My only symptom was itching.   I was in the hospital for six weeks and had to go back to surgery due to an abscess.  The doctors called in my family and told them I would never make it.   I came home after six weeks and had a slow recovery.  

Now I have a hernia in my left side and have to be very careful of it.   This cannot be repaired.   I did not have to take any treatments after my surgery. I am now on medication for my stomach and also take pills for sugar; which I control with my diet fairly well.

It will soon be 11 years since my surgery and I am thankful to be here today to tell about it.

Roland B., Laurinburg, NC   8/18/03

I was diagnosed on July 6, 1999 and since then have gone through extensive treatment.   I had a Whipple operation in Boston and I also had radiation therapy and chemotherapy.   I just thought you would like to hear my story of survival, which is a challenge everyday.  

I went to the emergency room on that dreaded day thinking or hoping that I was pregnant or that I had the flu.   How wrong was I?   Extremely.   You see my husband and I newly married were trying to conceive a child.   Now I know why I was having so much trouble.     

Well, I went to the hospital in the next town to mine.   I was born at this hospital in 1966.   When I got to the ER I was so ill that I would have sworn that I had still had my gallbladder - (it was removed 4/23/93).   The pain was so intense - almost exactly as when my gallbladder bothered me.

My mother came with me and told the doctor in the ER that my aunt (her sister) had died from pancreatic cancer in 1995.   The doctor at that point decided to admit and have me checked in the morning by a gastroenterologist.  

The next morning this wonderful woman appeared in front of me and my family and told us that she would be my doctor and that she would fix whatever was wrong with me.   Well guess what. that little lady saved my life.   She ran tests for two days and diagnosed me with a benign tumor on my pancreas.   That doctor is still my caregiver, my friend and my

GUARDIAN ANGEL.   She sent me to the best surgeon in Boston.   He performed a Whipple operation on me July 6, 1999.

Not knowing the seriousness of what was to come I forged ahead and kept positive that I was cancer free.  

I found out, after 14 hours in the operating room, that I had cancer.   I was stage "1", but I had cancer.   "No, not me," I thought.   Never "why me?", but " not me ".   I was determined to beat it.   My husband, my family and I struggled, but I had every treatment possible.  

Chemo ended on February 7, 2000 and I have monthly regular checkups.   I am getting the best care possible in Boston.   I go to the doctor faithfully and try to follow everything that they tell me.   I know I am only doing what is good for me, so it is kind of like rewarding myself.    I go to the gym on a daily basis and I watch everything I eat.   I am so thankful to have a second chance.   This cancer can be such a silent killer and I am so thankful to be alive.

Cindy D., Halifax, MA  8/6/03

On 3/31/01, a simple colonoscopy, by a local gastroenterologist, turned into a horrible mess. About 5 hours after the procedure, I began to bleed very heavily...nearly to the point of blacking out. My wife rushed me to the local hospital Emergency Room in our rural New Jersey community. Who knew back then that this medical "screw-up" would ultimately save my life.

As I recovered, over the next few weeks, I experienced some mild discomfort in my belly. My brother, a leading cardiologist, urged me to see my GI again. Well, several MRI's, CT scans, x-rays and endoscopies indicated a shadowing in the lining of my stomach, with a slight impinging on the pancreas area. This was now late May 2001, and it was agreed to wait a couple of months and then do another imaging. Since the belly discomfort totally dissipated...I agreed.

A follow-up CT scan in August 2001 indicated that the doctor was fooled. Apparently there were two shadows. The one in the stomach lining was gone...the one near my pancreas was vividly THERE. At this juncture, panic set in. My wife hustled to my doctor and the hospital to rush all medical records/imaging to my brother, who immediately used his clout to schedule an endoscopy and consult with the 2 leading GI doctors at his hospital. On August 23, 2001 a piece of the "shadow" was removed for pathology report, but the surgeon who did such, clearly remarked that from his many years of experience, unfortunately this was a malignant tumor in the tail of the pancreas. Major surgery was scheduled for September 4, 2001. When all was said and done, 12 days later I was discharged. I was told by my most gifted surgeon that by his own eyes, and by another CT scan, I was considered cancer-free. On 9/20/01, I had another consult with a pancreatic cancer specialist. Based upon all known factors, the specialist and her team recommended an adjuvant treatment regiment designed to minimize the chances of re-occurrence and/or metastasis. So in October 2001, I had a mediport surgically implanted in my right chest to access my superior vena cava. One week later, chemotherapy via a Baxter bottle was initiated, along with radiation simulation.

For the next 2 months, chemo and radiation were the very core of my existence...I did not miss one treatment...I did not miss one day of work.

CT scans proved no signs of cancer. To be sure, another round of chemo, directly to my mediport, went from January through March 2002. Still cancer free, I was told "no more chemo". From April through September 2002...chemo free. What a holiday! However, around Labor Day weekend 2002, I began feeling very fatigued...very not like me.

Visits to my oncologist and subsequent tests indicated a double whammy... metastasis of the cancer to my liver...and diabetes. I have been back on chemo since late October 2002, and shooting insulin 3 times daily.

Today is July 31, 2003. I have learned to appreciate life...my gorgeous wife of 26 years, Sheryl...my heavens, what have I put her through?! My beautiful children Lance (21) and Samantha (16) are the very soul of my existence.

Charles B., Morganville, NJ  7/31/03

I was diagnosed with Pancreatic Cancer in May of 2000.   While at work one day a co-worker commented on the yellowish color of my skin and eyes.   She would not let me do anything until I called my family doctor, which I did, and was seen by her that afternoon.   My family doctor immediately referred me to a specialist in a nearby city.   Later that same day I had an ultra-sound, followed by a CT Scan.   They also inserted a camera through a tube to insert a stent to help with the jaundice.   The following day I was consulting with a surgeon from the hospital in Boston.  

A whipple surgery was performed on 6/01/2000.   I came home from the hospital seven days later.   It was decided that I would have five weeks of radiation and 5FU (chemo treatment which is continuous through a port in my chest for 24 hours a day for five days a week for 6 weeks).   During these six weeks I was a little weak but was able to work my full time job.   On my way home from my last treatment I received a call on my cell phone that my second grandchild was born.   She was named Deanna and has an older brother named Alex.

I had two CT Scans during the next year and was told there was no sign of cancer.   In September of 2002 a mass showed up on the CT Scan on my Pancreas, along with an elevation of my blood marker count.   My oncologist put me on chemo (Gemcitabine).   I have a treatment every other Friday. This chemo does not seem to have any side effects, so I am able to continue to work.   My sister-law and I use my treatment day as a day to get out together and socialize with the wonderful people I deal with at the cancer.   Then, when I am finished we go out to lunch.  

I have so much support from my family, friends, and co-workers.   I really feel I am a very lucky person and I am going to beat this.   I am not a person who gives up easy, so I plan to keep a positive outlook and keep working and doing the things I love.   Above all, I plan to watch my two grandkids grow up.   Through my husband, daughter, grandkids, brother and his wife, and my sister, I draw the confidence to fight this disease.   It's been three years since my surgery and I am going strong.

Barbara U., Everett, MA  7/8/03

My mother was diagnosed with pancreatic cancer on April 15 2002. Her tumor was 1.5 cm in the tail of her pancreas, however, when they did surgery it was determined that it had spread into her regional lymph node. She was told that she did not have long to live, perhaps a year at the most. After her surgery she started to go into a decline and her white blood count had risen to a very high level. She was very ill and they had discovered that she had peritonitis. So another surgery was done and they removed part of her intestine. Five days later, it was discovered she had another hole in a different area and she was leaking fluid out of her incision, so back to surgery she went.

Now at this time she had put on 90 pounds of fluid from so many surgeries that her heart could not take it. She suffered a heart attack shortly after her last surgery. I was told that it was a slim chance she would make it out of the trauma and life support unit alive. It was a very long night and I was able to stay with her. The fear of not seeing her again or doing things together weighed heavy on my mind, for not only is she my mother, but also my best friend. It was my birthday the next day and low and behold my mom gave me a blessed gift - she came out of it and survived the heart attacks.

I was told her chances of survival where very slim due to all that happened to her and to the fact she had pancreatic cancer that had spread to her lymph node. She was in the hospital for 66 days and I was with her for each and every one of them. She said she needed to go home, and I was told that if she went home she would die there. But, that is what she wanted to do.
We went home but she did not die. She was not able to have chemo or radiation for she was not strong enough to withstand it.

It has been over a year now and her last CT scan, 2weeks ago, showed no evidence of cancer. With all that she has been through, I am amazed and blessed with each day I have with her. She is my inspiration.

Peggy R., Bayfield, WI  4/30/03

In December 1997, I started having terrific pain in my stomach area, even in my waistline and I just couldn’t understand what was going on. So we went to the University Medical Hospital here in Lafayette and they started treating me for ulcers. I kept getting worse. So I actually went back 3 times. The still insisted that it was ulcers and kept giving me other medications, which did not work. Well, approximately 2 weeks after the last time I went to the hospital, I turned as yellow as a cucumber. I couldn’t stand the pain anymore. It was just something way beyond what a human can relate with, so I went back to the hospital.

They saw me, the jaundice that had set, and put me right into the hospital. They did all types of testing. After they did the testing, the doctor could not see through one area where he was putting a tube with a camera. He told me there was some kind of a mass in there that was stopping him from being able to go ahead and do the procedure. After that, I started really getting concerned.

The next day, I had the surgery. In the time that I had the Whipple, I had a bleeder that went to the cerebellum of my brain. Then I was sent to a neurologist, who placed 2 shunts in my head. Seven different doctors told my husband and my seven boys that I had no chance of living at all. Through prayer and believing, I am doing great now.

My husband and my boys didn’t stop praying for me. I am really grateful for everything that the docs have done and everyone who had a part in this. I’m doing great and just want to help other people now!

Geneva E., Lafayette, LA  3/03

I am a 47-year-old female and was diagnosed with Pancreatic cancer on October 7, 2002. I began having problems with elevated liver function test in June of 2001. I had been on a cholesterol-lowering drug so this was thought to be the culprit and was discontinued. However, in September 2001 the liver function was still elevated. They thought it was my gallbladder and an ultrasound did show stones. I had a CT scan, but it failed to show any pancreatic mass. I had my gallbladder removed on October 24, 2001. In January 2002 my liver function was still elevated and I had an ERCP and was found to have a gallstone in the common bile duct. This was removed and everything went back to normal. In May 2002, my liver function was again elevated and I was jaundiced. I had another ERCP and was found to have narrowing of the bile duct due to scarring from the removal of the stone. A sphincterotomy was preformed and liver function returned to normal, but was again elevated in August 2002. I had another ERCP with stent placement and brushing done of bile duct, but no malignancy was detected. The stent occluded in September 2002 and was replaced, but my gastroenterologist didn't think this was going to so