My tumor was in the head of the pancreas compressing the bile duct. It measured 4cm x 3cm x 3 cm. From CT and EUS the initial staging was IIb. The imaging showed close proximity to the portal vein and why a decision to do the Whipple immediately was taken as the window of opportunity was there with my tumor characterized as highly aggressive.

When I was opened in the ER, it was noted the tumor was abutting the portal vein. Fresh frozen sections were done and with concurrence of the attending pathologist, it was decided to continue. Cellular pathology of the surgical specimens confirmed there was portal vein invasion and 11/22 lymph nodes positive. I was restaged as III. One week after the Whipple a CT was done to make sure there was no intestinal blockage. There was not but the radiologist noted metastatic disease in the liver not seen in the initial diagnostic scan done two weeks earlier. The micro metastatic disease grew rapidly to the point where it was large enough to be detected.

I advocated in requesting being treated with Folfirinox and radiation if it was felt it would be beneficial. The Tumor Board chose to treat me palliatively and not more aggressively. Three months on Gemzar had no effect. All six metastatic areas in my liver were now sizable tumors. That’s when I advocated again I wanted more aggressive chemo. I communicated I knew the risks, was willing to exceed 12 cycles to address minimal residual disease that often remains after 12 cycles and why patients have progression.

I was 55 and in very good physical shape from long distance, endurance bike riding. I had no co-morbidities to impact aggressive treatment. I indicated my willingness to take as much chemo as my body could handle and was not concerned with the possibility of permanent neuropathy.

My oncologist treated me with the original formulation of Folfirinox that was used in 2012-2014 at full dose based on my body mass. I was dosed in cycles of six and that was alternated with six cycles of 5-FU with leucovorin. Then it was back on Folfirinox. In total, the combined chemo was 46 cycles with 24 being Folfirinox and 22 of 5-FU with leucovorin administer every 15 days for 24 months with no chemo holiday or delays. I had a strong will to survive and found ways to endure and persevere. It has resulted in 11 years of survival of stage IV disease and not only reaching NED status, but being confirmed cured of metastatic disease.