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Survivor Story: Clinical Trial Participant - Lynda Coop

12/29/2011
My journey with Pancreatic Cancer officially began on March 5, 2007. As I awakened from a biopsy procedure, I was informed by the physician that I had adenocarcinoma in the head of the pancreas. While not yet fully awake from the procedure, what he said didn’t seem totally unexpected. Thinking back to the previous four months I could see there were some subtle changes in my health.

During the Thanksgiving and Christmas holidays, I was feeling unusually tired but thought this was due to working full time, holiday preparations, and caring for my aging father. But, after the holidays in addition to the fatigue, I began to experience vague digestive symptoms such as fullness in my stomach after eating even small amounts of food and then a loss of appetite. In early February of 2007, my symptoms prompted me to see my primary care physician.

My primary care physician ordered an ultrasound of my liver and pancreas. The results, along with lab results, showed possible pancreatitis. I was then sent for a CT of the pancreas which showed enlargement of the head of the pancreas and multiple swollen lymph nodes in the abdomen - no evidence of a tumor. At this time my physician referred me to our university medical center where I saw a gastroenterologist. He felt that my symptoms and history were not significant for a GI cancer, but he wanted me to have further testing to find the cause of my symptoms. I had the EUS procedure completed on March 5, 2007 where the biopsy results showed adenocarcinoma in the head of the pancreas with a tumor measuring 2.0 cm by 2.6cm in size.

I tolerated the EUS procedure well, but unfortunately, the next day intense itching and jaundice started. I then had an ERCP to have a stent placed in my bile duct to relieve the obstruction caused by pressure from the cancerous tumor in my pancreas. Referrals were then made to a surgeon specializing in pancreatic cancer, as well as to medical and radiation oncologists. At this time I was asked if I wished to participate in a clinical trial looking at a new protocol for initial treatment of pancreatic cancer. This protocol focused on an intense two week treatment of radiation, chemotherapy and targeted therapy. The treatments left me with extreme fatigue, nausea and loss of appetite, but with the aid of medications I was able to tolerate the treatments without significant problems.

After recovering from the radiation and chemotherapy, I had the Whipple surgery on May 4, 2007. The surgeon told me the treatments I received in the clinical trial had decreased the size of my tumor by 2/3 the original size at diagnosis and that there was no evidence of lymph node involvement. As the surgeon said, it was “a best case scenario for someone with pancreatic cancer.” However, even with this good outcome, I was told that the average life expectancy with these results was 22 months.

In July 2007, after recovering from surgery, I again started on chemotherapy for six months. Overall, I tolerated the chemotherapy well with some nausea, loss of appetite and fatigue. Thankfully, medications greatly helped with side effects of nausea. During this time I had frequent visits with my oncologist, CT scans and labs - all showing positive progress - no recurrence of cancer.

In early 2008, I began to research new clinical trials for prevention of recurring pancreatic cancer. Through the Pancreatic Action Cancer Network and the National Cancer Institute, I was able to find a clinical trial at another medical teaching center. With my oncologist’s approval, I was able to seek acceptance into a clinical trial that looked at using pancreatic cancer vaccine to prevent the recurrence of pancreatic cancer. Beginning in April 2008, I received a pancreatic cancer vaccine every other week. I was monitored with labs, CT scans and regular visits with the oncologists involved with the clinical trial. I received a total of 13 vaccinations, with the last one received in November 2008. It was at this time I was told by the clinical trial oncologist that my abdominal lymph nodes were enlarging which probably indicated recurrence of my pancreatic cancer and I was released from the trial. I followed up with my primary oncologist, a PET scan and CT scan showed no recurrence of cancer. As of October 2011, I remain free of cancer - more than 4 1/2 years after diagnosis. I have received no further treatments and am monitored every six months with CT scans, labs and visits with my primary oncologist.

There is no evidence either way as to whether or not the pancreatic vaccine has prevented the recurrence of my cancer or if this is the natural way my cancer would have progressed without the vaccine. As a retired nurse, I feel strongly about the positive benefits of medical research and I personally believe that I am still alive and feeling well due to the results of both clinical trials.

This journey with pancreatic cancer has been one of many mixed feelings, with the expected ones of disbelief, sorrow, fright, self-pity, and anger. On the other hand, I have also experienced much satisfaction in the accomplishment of each step of treatment, joy of spending more time with my family, appreciation of each day and a sense of hope for the future. I have come to realize that we each have only one day at a time to enjoy. The past is gone; the future is unknown; only today can we make a difference for ourselves and others. I am thankful to God for being with me through this journey with pancreatic cancer and for my life. I pray that in your journey with pancreatic cancer you will find the best care possible, a sense of inner peace and hope for the future.

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