What helps manage Neuropathy with Folfirinox?

My husband's started in his toes and finger tips. Has gradually worked up towards his knees and is now severe. We did not know about the cold therapy when he was on folfirinox, but have used it since switching to abrax/gen ... Unknown if it would have been even worse without cold therapy, but it definitely has gotten worse.

I had 12 cycles of Folfirinox. After about the 5th cycle, I started getting neuropathy in the soles of my feet. If you can get some of the cold therapy mittens and booties (or whatever they're called) I would advise doing so. The neuropathy in my feet has become bad now and makes my walking unsteady. It's a real aggravation and as far as I know, there is no way to reverse the condition.

I am sorry to hear your neuropathy has made you unsteady while walking. I started with cold therapy right away on my first chemo session and have been doing it for all since then. The issue I am having is not in my feet but in my shins. I think the drug pools there instead of going down to my feet. Do you take anything like gabapentin to help with the neuropathy? I have seen others talk about using gabapentin. Sending you prayers for healing and stability.

No, I haven't tried gabapentin but will ask my oncologist about it next Tues. Thanks for the advice. Neither of the chemo infusion centers I've gone to ever mentioned the cold therapy. I found out about it on this forum.

My husband was taking gabapentin, but did not seem to be helping. Dr now has him on duloxitine... but same thing, unknown if it is helping. His neuropathy has gotten severe so walking is difficult. I've got a walker for him... so far he thinks he is ok with a hiking pole. But there are times that I wish he was using the walker as he is very unsteady. He's afraid a wheel chair is in his future.

I had folfirinox also. I didn't take any medicine for the neuropathy. They reduced my oxaliplatin after the first 2 treatments (I think they reduced it to 80%) to reduce my jaw pain. I had bad jaw pain with my first bite of food at each meal. I stopped the fulfirinox after 7 or 8 rounds and changed to gem/abraxane because of the jaw pain and the neuropathy. The gem/abraxane continued to do well for me. I hope you can find something to help the pins and needles feeling in your shins-I didn't have that. A heating pad on my feet in bed at night, did help my neuropathy in my feet-my feet were always so cold.

I am not on chemo and my reaction to the one round I tried was so bad I have just stopped treatment. I have had neuropathy for years. Even autonomic neuropathy. Over the years I have tried many things to help and found a few that do for me. The one that helps the most is to keep blood sugar levels between 140 and 80. Not sure if you have been checking your BS but that can be a problem for pancan. And the steroids given with chemo to help with side effects cause BS to spike. I had some lotion that tingled my skin. And applying that to affect areas helped the most. Part of that was just rubbing the lotion in the affected area. Then an ace wrap or long sock on top of the tinging lotion. Or wadding up my bedding around my legs. For really bad times I would just have to try to walk it off. The walking did 2 things. It lowered BS and promoted circulation in my legs. I have been on gabapentin for many years. For me it helps prevent neuropathy pain from starting but will not do much for the pain after it starts. Once the pain starts it just has to run its course, and I need to maintain good BS levels for it to go away. I hope this is of some help.

Best wishes to all dealing with cancer.

Jack, do you remember the name of that lotion? My neuropathy is very bad. Thanks.

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.

Thank you so much, @stageivsurvivor for sharing your experience. I am so encouraged by your post. I was diagnosed with stage IV as well and to read about your journey gives me hope. Thank you. Did you use any cold therapy while receiving your chemo?