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Now published in Cancer Research: a Pancreatic Cancer Action Network study predicting that pancreatic cancer will be the second leading cause of cancer-related death around 2020. Learn more.

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apr
2014
Carol-ForemanSm

This is why I am fighting to advance research for pancreatic cancer……

Carol-ForemanMy father, Minus John Leleaux, went to his dermatologist for what he thought might be an ingrown hair on his face. Daddy was concerned because the “lumps” were starting to come out on his head too. It was Memorial Day 2010 and the dermatologist called my father with biopsy results. He told him to come in on Monday with a bag packed ready to be admitted for additional tests.

Then the “C” word was said for the first time. The biopsy tested positive for adenocarcinoma of the skin. I think my father thought that he had actually been given an early warning to something going on inside of his body, but on June 7th our life changed forever. A scan showed innumerable tumor cells involving his liver, stomach, right shoulder, with the primary tumor cells in his pancreas. My father had Stage 4 Metastatic Pancreatic Cancer. The cancer had metastasized to his skin. The doctor said he had never seen a case like this.

My father was a Navy man and fought a hard fight, but on August 11, 2010 my father died.

My father was also one of the most generous and giving men you could ever hope to meet. If you came to visit his house, you never left empty-handed. He didn’t have much growing up but he always had that giving spirit. He taught us that there will always be a need somewhere, and every person has something to give.

The November after he passed, I made the decision to continue my father’s fight. I am now a volunteer with the Pancreatic Cancer Action Network as the Community Representative for Paducah, Kentucky.

What really motivates me is connecting with other volunteers. When I started I had no clue what I was doing, but being around volunteers, seeing people who lost loved ones make something positive about something so sad, I knew I wanted to do the same. I also love seeing the difference I am making. I went to Washington, DC to tell my story and I helped pass the bill (The Recalcitrant Cancer Research Act). I know I made a difference. My father’s story has made a difference.

It doesn’t take a whole lot. You can start out by doing a little bit. For me, it was almost like a flame that became a fire. In the beginning it was, “Well I can do this much,” and then I did it, and spent time around other volunteers and it was all fuel for the flames and the fire just grew and I wanted to do even more. I know that my efforts will not bring my daddy back, but I know that he would be honored to know that I am fighting this fight for him so that his grandchildren and great-grandchildren will not have to know pancreatic cancer. My father’s name was Minus – a rather unusual name. I see it as a legacy. Like my brother David says, “We will fight for a cure and someday we will have a world ‘Minus’ pancreatic cancer.”

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apr
2014
Brenda-ColemanSm

“Spreading Hope and Inspiration: One Woman’s Journey with Pancreatic Cancer”

Brenda-ColemanSurviving pancreatic cancer is like walking a tightrope.  In one hand, you hold the reality of this disease, the statistics and limited treatment options. In the other hand, you hold the desire to be hopeful, to believe in what could be. And then balancing the two, we have to stand on the rope and greet each new day as a gift.

I am humbled to be one of the long term survivors of pancreatic cancer. At age 44, I was a healthy, active, stay at home mother of four, with three still in grade school.  In 2001, I noticed my digestion process seemed slower and somehow not normal.  Lab tests were followed by an ultrasound and then an MRI, with no results. Finally, a CT scan showed a suspicious looking “spot” on my pancreas. I had pancreatic cancer. I had the Whipple procedure, which was major surgery, and fortunately the results were better than we hoped for. Still it was a long recovery as I adjusted to a “new normal.”

I participated in a clinical trial treatment that lasted six months. During that time, we had a focus: we were actively fighting the cancer.  But once treatment stopped, it became a waiting game. Would the cancer return?

About a year after my surgery, I had the chance to speak to a group at our church. I came to a new realization … that this cancer journey was not mine alone… that others who loved and surrounded me were being changed for the better because of my cancer. That perspective brought me, for the first time, a sense of “peace” about my destiny, whatever it would be. In the midst of the uncertainty and fear, I felt a deep sense of gratitude.  I was grateful to be a survivor.

In 2009, I accepted a volunteer leadership role with the Pancreatic Cancer Action Network to help spread the word in Minnesota about their Patient and Liaison Services (PALS) Program.  I started by recruiting a handful of willing volunteers.  We decided that the best way to get the word out about PALS was through physicians and their nurses.  Every patient will eventually see an oncologist, and most will see a gastroenterologist, so we started by targeting those clinics and doctor’s offices. All of us were survivors or family members, so it was easy to explain how these resources could be so important to patients.

In 2010, I became the Twin Cities Affiliate Coordinator for the Pancreatic Cancer Action Network.  This work has been hugely rewarding for me, as more and more people learn what we are doing and decide to join us.  The organization has a goal to double the survival by the year 2020.  This sounds very aggressive, but we believe it is achievable.  And having a concrete focus creates hope and excitement for all of us.

We have accomplished a lot here in Minnesota that helps us toward that goal.  It is amazing to me that passionate volunteers can make such an important impact. In the last eight years, our PurpleRide event alone has raised $2.5 million. This combined with our local PurpleStride Rochester, TEAMHOPE runners at Grandma’s Marathon and PurpleLight events have united our community and raised a tremendous amount of awareness and funds, totaling close to $3.0M in MN over the past 8 years.

Last year, after 11 years, I experienced a recurrence of my cancer which we are currently treating.  I now know I will likely never be done with this cancer, but I know that the only thing I can control is how I respond to it and I have decided that I won’t give up. At the end of the day, I want to everyone to know that our experiences with pancreatic cancer can serve a purpose. Every experience, everyone’s journey, can bring hope and inspiration, if we all work together to make a difference.


Brenda lost her battle with pancreatic cancer on May 6, 2014. Her generosity of spirit and her unstinting service to the pancreatic cancer community over the last five years are her shining legacy.


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apr
2014
cheneysSm

cheneysIn the fall of 2004, a local doctor told Ralph Cheney he had an “undiagnosed obstruction” in the tail of his pancreas after two bouts of pancreatitis. Local doctors wanted to wait and re-scan in six months. His wife Mariann said, “No way.” The couple went to a major center in New York with expertise in pancreas cancer. There, a gastroenterologist known for his skill in performing Endoscopic Ultrasounds told them he could not reach the tumor but had a hunch that it was cancer. Several months later in January 2005, Ralph had a distal pancreatectomy and spleenectomy and was diagnosed with ductal adenocarcinoma, Stage III.

After the devastating loss of Mariann’s sister to cancer in 1997 and then her sister’s husband Jim in early 2005, Mariann and Ralph made a commitment to each other that they were going to beat this disease and make sure that they were transparent about sharing their journey with everyone they came in contact with.  According to Mariann, “It’s important that people know it’s possible to live happy and joyously even though there is a 500 pound gorilla in the living room.”

Right after Ralph’s surgery, the couple connected with the Pancreatic Cancer Action Network. Ralph was matched with a survivor to speak to who provided the wisdom of his own experience and hope throughout Ralph’s journey. The couple attended the Pancreatic Cancer Action Network’s Evening with the Stars event in 2005 and thus began their commitment to helping the Pancreatic Cancer Action Network in any way they could.

Ralph says, “I love my volunteer work. Taking calls from folks like myself who are filled with questions and who I can share my experience with has provided me a way to be useful. As Community Representatives, Mariann and I have participated in Advocacy Day in Washington as part of our continued commitment to help obtain the momentum needed for making pancreatic cancer research at the forefront of our leaders’ minds. Every day is a gift. Today, I’m an almost ten-year survivor, without evidence of pancreatic cancer. I am grateful, filled with hope and gratitude for the Pancreatic Cancer Action Network family and for the research commitment we must continue to be laser focused on.”

Mariann concurs, “Sharing our journey with patients and their families, listening to other’s concerns and walking the journey with people from all over the world has been a sometimes sad but ultimately joyful experience and we won’t stop our promise to get the funding we need until we reach our goal to double survival by 2020.”

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apr
2014
volunteer

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news2

A MULTI-STEP APPROACH TO DIAGNOSING PANCREATIC CANCER EARLIER

One of the reasons that pancreatic cancer is such a challenging disease is that it is frequently diagnosed once it’s reached more advanced, aggressive stages. The best opportunity for a positive outcome is when pancreatic cancer is diagnosed early, when the patient might be eligible for surgery.

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Let us help you by informing patients about your pancreatic cancer clinical trials.  If you are conducting clinical trials, we want to know about your studies!

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nov
2013
Volunteer Recruitment

Our volunteers are second to none.  Passionate, focused and relentless in their desire to change the course of history for pancreatic cancer.  Are you ready to get involved?