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@scalettasandy

I know this is a stupid question but is there any way to prevent getting neuropathy? I’ve only had 3 treatments so far and just panic at the thought of having that happen. I know, better than dying but if there’s any way to avoid it please help! Next infusion is Monday.

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Replies to "I know this is a stupid question but is there any way to prevent getting neuropathy?..."

@scalettasandy That's not a stupid question at all. There are various studies out there suggesting compression and cooling MAY help.

Numerous solutions are available with socks/booties etc that have slots for ice packs, some that provide compression, and some that provide both.

Appropriate gloves might be harder to come by, but one study saw good results from compression alone, using two surgical gloves (one layered on top of another) one size too small on each hand. I've tried this, and it's a lot more enjoyable than icing.

The theory is that cold and compression constrict blood vessels, restricting blood flow. If you ice and compress while the worst chemicals (abraxane, platinum) are being infused and for a little while after, you avoid the strongest concentrations of those drugs being delivered to your periphery (hands and feet) and thus to the nerves in that area. It seems like elevation would help as well, but I haven't seen any literature on it.

A similar approach using cold caps during chemo has been somewhat effective at reducing hair loss.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/
https://www.curetoday.com/view/cold-compression-may-prevent-chemo-induced-neuropathy

Some say cold mitts and feet wraps help. Maybe try acupuncture. I started way late after my neuropathy started. The Chinese acupuncturist I see says there is a lot of toxic build up in my feet and ankles so it will take a long time for it to work its way out of my system. Seems to be working well, but there is some pain as the neuropathy affected areas "wake up".

Re neuropathy, talk to your oncologist about skipping the oxaliplatin after some treatments. In my case, my MD dropped oxali from my infusion after 8 rounds of chemo. He said years ago, when he started practice, the approach was to continue treatment come h-e-double-hockey-sticks or high water until the patient couldn't stand it anymore. But by then, the neuropathy was permanent and debilitating. My MD said he's convinced he crippled (his word) some patients by persisting with the oxali. So now, he routinely drops it from the Folfirinox after 8 rounds. I had developed a little neuropathy in my hands and throat, but it has almost entirely resolved.

I read your posts farther down about the challenges with your isolated location. We are fortunate that we live in a large city and only 15 minutes' drive from my infusion site and MD offices. Still, I appreciate your worry. Is there any way you can organize--or get a friend or church or workplace to organize--a group of people who can help you with transportation, meals and the like? If people rotate through a schedule, it wouldn't overload anyone, but it would help you with constant support that you can count on. Another idea is to have a relative or relatives come visit you for several days at a time; while they're there, they could take you to chemo, stock groceries, run errands, do laundry, etc. The last option would be to move closer to your chemo site/MD offices. That is not ideal and would require a lot of work, and you'd give up everything you know in your small town. But it may be something to consider.

Finally, re the diarrhea, if you have it so badly that you fear leaving your house, talk to your MD and get some medication to help control it. My MD prescribed Lomotil and (over the counter) Imodium, which were to be alternated on my challenging days.

I hope some of that helps!