See All Stories

Survivor Story: Clinical Trial Participant – Ed Zinsmeister

Pancreatic cancer is as insidious as it is deadly.  I was lucky…almost.  

It all started out as something that if I were Italian I would call "agita."  I was treated for acid reflux.  This treatment was of no help at all.

Later on, when having a CT scan for a suspected hernia, which did not exist, it was revealed that my bile duct and pancreatic ducts were enlarged.  The range of enlargement was within normal, but when I heard the word "pancreatic," my blood ran cold. 

In the final manifestation, my stomach swelled up with gas and I would belch carbonation as if I had drunk many sodas.  This became alarming, and another CT scan revealed a tumor on the head of the pancreas, partially closing my duodenum.  In effect, I was like a clogged drain.  I was rushed to a hospital and the tumor was resected.  At this point my cancer was stage I.

Halfway through my hospital recovery the surgeon came in and immediately sat down.  When they sit down you know it's bad news:  one lymph node was infected.  Now my cancer was considered stage III.  I was given a number of treatments and after a clean scan was considered in remission.  So confident was my oncologist that he had my mediport surgically removed. 

After being cancer free for a year, a routine scan revealed that the cancer had come back in the abdominal wall.  My head spun with shock upon receiving this news, as if I had received the worst kind of sucker punch.  

Now began another series of treatments, starting with a chemotherapy combination consisting of four different drugs, which is extremely rigorous.  When this failed to be totally effective, a combination of a chemotherapy and targeted therapy drug was tried.  This combination also worked, but only for a while.

It was suggested that I try a clinical trial.  To be eligible for this, I had to go off treatment altogether and I waited too long.  The cancer came back with a vengeance, I swelled up with a total of eight liters of fluid, was in great pain, horribly depressed, and I wasn’t sure it was worth it to continue living.  The fluid was ultimately drained and at last I started the clinical trial.  It didn't work right away, but my first scan after two months of treatment was most encouraging.  

At this writing, I am still in the clinical trial and feeling pretty well.  I have now been alive three and a half years from the onset of the disease.  In addition to the clinical trial, religious faith, and the love a good wife have carried me through.

Has all this been life changing?  Not greatly.  My main goal is simply to return as much as possible to my former ways, doing work that I find creative and fulfilling.  To the extent I am able, this is what I do.  I desire neither to stop and smell roses, nor to romp with dogs.  I have eschewed support groups and "counseling" and will continue to do so.

This has been my path, and it may not be for everyone.  However, I do urge participation in clinical trials if that course is appropriate.  My weak sense of altruism whispers to me that my clinical trial experience just might help others.

See All Stories

© 2014 Pancreatic Cancer Action Network

The Pancreatic Cancer Action Network is registered as a 501(c)(3) nonprofit organization. Contributions to the Pancreatic Cancer Action Network are tax-deductible to the extent permitted by law. The Pancreatic Cancer Action Network’s tax identification number is # 33-0841281.