Most patients don’t understand the significance of staging and assume the worst when told it is a later stage. All that does is create undue fear, anxiety and stress- not needed when dealing with a tough cancer. Staging is what the oncologist needs to know so he/she can determine the best course of treatment.

I did not ask what my diagnosis, prognosis or life span was estimated to be. I focused instead on
finding the most qualified NCI designated medical center in cancer care with a pancreas program and a multidisciplinary team highly skilled in treating it in my region. Having a medical research background, I knew I was going to be in the fight of my life. I was not interested in palliative. My goal was long-term survival and I made it clear that was my intention and would take the most aggressive chemotherapy to achieve my goal.

I did 24 cycles of the original higher strength of Folfixinox in groups of six cycles. It was followed with six “resting” cycles of 5-FU and Leucovorin. This was repeated over the course of 24 months. After the first cycle of six, I was genetically tested and a mutation driving my cancer was discovered. This allowed me to focus on searching for an appropriate clinical trial targeting the specific mutation. After the standard of care treatment was completed, a suitable clinical trial had become available a few months earlier and I became the first patient to enroll.

I had a complete response to the drug. The aggressive SoC chemo plus the addition of the clinical trial resulted in surviving stage IV pancreatic cancer. I just celebrated the 10 year anniversary of my Whipple surgery which despite having it, went on to having metastatic disease to the liver. Every year I celebrate each anniversary IRB all the members of the multidisciplinary team that successfully treated me. And every year I thank them for never having told me what my stage was, my prognosis and my expected lifespan. They saved themselves a lot of embarrassment my keeping their mouths shut.