After Whipple surgery, Pathology showed Positive Lymph Nodes

I had a Whipple in 2012 with 11 of 22 lymph nodes positive, portal vein resection and clear margins. I was staged III, locally advanced and borderline resectable. The cellular pathology was poorly differentiated and high grade. A week after the Whipple which was two weeks after the initial CT scan, a radiologist noted multiple suspicious areas in the liver resembling metastatic disease and it needed to be surveilled going forward.

Prognosis- I never asked my exact diagnosis and thankfully it was never volunteered in being divulged. I was also never told about the suspicion of metastatic disease. So in my mind, things were better than actual. The tumor board met and decided to treat me with Gemzar instead of Folfirinox. Abraxane was not available until 2013. I indicated I was willing to take Folfirinox and as much as my body could handle and go for curative intent. The tumor board was of the mindset no one is cured with metastatic disease and the reason why palliative care was chosen despite my willingness for more aggressive chemotherapy.

A CT was done after completing three months of Gemzar. The result- 6 sizable tumors in the liver. Now I got the chemo I asked to be administered on day 1. The first CT on Folfirinox showed 54% reduction on all tumors. The next six cycles were 5-FU+Leucovorin as resting cycles to lessen neuropathy from Oxaliplatin. Continued shrinkage was observed. When those six cycles were completed, it was back on Folfirinox. And so it went until 46 cycles in total were administered (24 of Folfirinox and 22 of 5-FU).

After the fist 6 cycles of Folfirinox, a liquid biopsy was done detecting a germline genetic mutation. That information allowed me to focus on finding a clinical trial. It took 14 months of searching until an ideally suited trial was available. After treatment cycle 46, my tumors shrank about 80%. The efficacy of 5-FU was slowing. I started the trial and had a complete response in 18 months and was declared NED in April 2016. Overall survival is 10 years 3 months.

I would not give up, was willing to possibly have to live with permanent neuropathy and willing to take as much of an aggressive treatment my body could tolerate.I was 55 when diagnosed, no other co-morbidities, had been bike riding as much as 200 miles/week up until I was diagnosed. I continued to push myself hard all through chemo exercising and living as normal a life as I could. I got my chemo where I worked at a large medical center in NYC. So every day I got up at 5:00 am whether for work or chemo and did a 4’20” round trip commute. I never missed a day of work or took a break from chemo in 3.5 years. I was determined to survive and prepared myself physically, mentally and emotionally to deal with the adversity and challenges.

On the subject of neuropathy, I felt it better to be alive with neuropathy than dead. It was uncomfortable but I was willing to accept it and learned how to deal with it. Gabapentin gave me relief and after 2.5 years of finishing Folfirinox, I began to notice slow but steady improvement. Several years after improvement, the neuropathy has almost resolved. I have a small amount remaining in the large toes and it does not impact my activities. I chose to get MRI surveillance twice a year despite being told I could go down to once a year. I also have ctDNA measured several times a year which affords earlier detection of reoccurrence. ctDNA measurements were experimental for following solid tumors in 2014. An offshoot of the clinical trial was in donating blood for a very vaguely described study. I was to later learn it was for ctDNA which has become a paradigm shift in monitoring for reoccurrence over CA19-9 and CT or MRI which have detection limitations.