I advocated for aggressive chemotherapy of Folfirinox. This was the formulation used from 2011-2018…not the (m)Folfirinox used since 2018. The original version was 20% higher concentration. I had chemo every 15 days for 24 months without pause.

Because of the concern for permanent neuropathy, my oncologist did an alternate mode of administration. The first six cycles were Folfirinox. Cycles 7-12 removed the Irinotecan and Oxaliplatin. These were considered resting cycles to let my body recover, hopefully lessen the effects of neuropathy and not becoming permanent while keeping the tumors stable or just growing slowly until cycles 13-18 when all components were then given. This alternating dosing went until cycle 46 when a CT scan showed no more shrinkage. At this point, the six major tumors had shrunk approximately 75-80% and the smaller ones were no longer seen. It was likely what remained was scar tissue that eventually was cleared by immune system cells. After a two week  “wash-out period” of the 5-FU/Leucovorin, I entered a clinical trial testing a PARP inhibitor that targeted my gene mutation. At the point I entered the trial, I was likely already NED and probably any minimal residual disease was eliminated from the excessive chemo I had. So it was more likely the chemo is what did it and the clinical trial drug kept any new primary tumor from occurring.

I was 55 and in otherwise excellent physical condition from long-distance bike riding. My objective despite being stage IV was to attempt cure although I’m sure my team was thinking it was not likely to happen. My top priority was survival and as long as possible. It was all or nothing. I had no intention of stopping and was committed to sticking to my goal till the very end. This is why I advocated for the more aggressive approach and thankfully my team agreed to do it.

Was it doing excessive chemo, the clinical trial, a combination of the two or was there something unique about my immune system that made me what the NCI categorizes as an “exceptional responder” is not known. In those that are classified as exceptional responders, it is often observed that T-lymphocytes of a specific type can get past the fibroblast-stromal layer and penetrate deep into the tumors and work in conjunction with chemo. When I was asked if I was willing to submit to a biopsy of one of the liver mets after having such a robust response, I gave consent. There was one major problem- a review of my scans showed nothing remained to be biopsied. So what factors led to my becoming cured of stage IV remain a mystery.

From anecdotal observation of other long-term survivors that did aggressive Folfirinox or Gemzar/Abraxane, our diagnosis was made between the ages of 39-55. Most of us did significant bike riding or were runners. None of us ever smoked, did not or rarely drank, ate healthy with average BMI values and had no co-morbidities of any significance. We tolerated the chemo well and the major complaint was neuropathy.

I did develop neuropathy in the hands, fingers, balls of the feet to the toes. Sensitivity was dulled but I never lost feeling in the extremities. I always was ambulatory but did experience a loss of spatial awareness at times of where my feet were and occasionally caught the tips of my shoes when walking. I also noticed times where I was unable to walk in a straight line and tended to drift to the right. My hands and fingers cleared first followed by decreased sensitivity to cold which then resolved. That was close to one year. The feet took considerably longer. There was no improvement until 2.5 years after finishing chemo. The feet eventually resolved after 7.5 years.