During chemotherapy I exercised to stimulate circulation in the hands and feet. The infusion with oxaliplatin can be lengthened to 120 minutes from 90 minutes. The slower infusion rate allows the drug to be less concentrated in the circulation making it less neurotoxic to nerve endings but still plenty toxic to malignant cells.

I was being treated with full dose Folfirinox for metastatic disease throughout my liver and the plan was to go well in excess with Folfirinox. Because chemo induced peripheral neuropathy is well known from oxaliplatin and I was going to be receiving full dose, not modified Folfirinox, my oncologist administered 6 doses of Folfirinox and then the next six were just 5-FU/Leucovorin as resting cycles to allow the nerves to recover. This alternate dosing continued through 46 cycles when I finished the treatment.

I ended up receiving 24 cycles of Folfirinox and the resting cycles still proved effective in shrinking and eliminating the tumors from my liver. I was declared N.E.D. after standard of care was completed and about 10 years after that it was determined by a number of noted pancreatic cancer medical and surgical oncologists that I was cured. They credit the amount of oxaliplatin I was able to tolerate as a key in achieving cure having been diagnosed with late stage-disease.

I did develop neuropathy in the hands, feet and cold sensitivity in the fingers and throat. The hands resolved after 1 years, the cold sensitivity in the throat was much quicker. I had Reynauds syndrome in three fingers that resolved after three years. The extend of CIPN in the feet was limited from the balls of the feet to the toes. It likely was how I was dosed that prevented it from being worse and daily moderate exercising of walking a few miles. I also frequently massaged my feet and did warm water soaking in the cold months.

To deal with the discomfort in the feet, I wore loose-fitting socks to sleep in. Near the end of the chemotherapy, the feet were very uncomfortable and I requested trying gabapentin. An initial dose of 300mg every 8 hours was too much and had unpleasant side effects. I lowered it to 200mg every 8 hours and that was better but caused disturbing dreams. I then tried 100mg every six hours and that turned out to be the “sweat spot”. No more disturbing dreams and an amount of symptoms reduction that helped in sleeping. The other medications used and the one more commonly recommended is Duloxetine (Cymbalta). Another alternative is Pregabulin (Lyrica).

Some patients report they get temporary relief from acupuncture. I did not use that method for several reasons: It was more convenient picking up an Rx of inexpensive gabapentin and taking it anytime then having to make an appointment for weekly sessions to see an acupuncturist, sit in a waiting room, pay a co-pay and the time for the session. I got the desired results at a time and cost savings to me over acupuncture. And acupuncture is not a method of cure, only temporary relief of symptoms.

For the first 2.5 years after finishing Folfirinox I did not notice a lessening of neuropathy when I would pause the gabapentin. After 2.5 years, I began noticing it was very slowly improving and 7.5 years after finishing chemo, the symptoms completely resolved.