Chemotherapy-induced neuropathy: What helps get rid of it?

Does anybody have any suggestions about how to stop chemo caused neuropathy? My neuropathy wasn't too bad until AFTER my Dr. stopped the Oxaliplatin infusions. About a month later the numbness/tingling came on like gang busters and it has been with me for 3 or 4 months now. I walk, massage, my hands and feet, do finger exercises but nothing seems to be slowing it down. I had my vitimin D and B12 levels checked (D was fine B12 was very high). I am desperate to get rid of this; not only because it's so annoying, but if I can get rid of it maybe I can go back on the Oxaliplatin which was working well to shrink my tumors. (New drug is not shrinking them and they may be growing). Does anybody know of anything I cam try? I was told that if it doesn't go away in a year, it's never going away. So I want to do everything that I can to help the recovery from neuropathy along. Thanks.

Why do you write that?

Well I would definitely skip Mayo Clinic in Arizona.

I have been to two pain clinics. The first one had a big sign at the front desk that read “We do not prescribe narcotics”. What? Oh, I remember! We’re in the throes of the greatest opioid crisis in history. Looks like I picked a bad time to get neuropathy. Prescribed a higher dose of Pregabalin, which my GP prescribed earlier. No help. How about this - the nurse from a neurology clinic I was at called me the day before my appointment to tell me that “we do not prescribe narcotics so do you still want to keep your appointment?” What? The last pain clinic where I was seen did start a trial treatment plan with Dilaudid, but, as I found out, much to my dismay, times have changed. Their protocol is that (for every appointment) I had to submit a urine sample and sign off on their drug screen paperwork to get a one month prescription refill, which the doctor canceled at my followup appointment, because he concluded I was not making enough progress to the goals he asked me to provide during my initial appointment. He did, however, succeed in making me feel like a criminal for suggesting a narcotic. Guilty ‘til proven innocent, if that’s even possible. Not sure who actually runs the clinic, the doctor or his lawyer. They got this narcotic thing locked down so hard and the bar set so high, I’m not sure how anybody qualifies for a prescription anymore. But, not to worry – he got his $600 for eight minutes of his time as he showed me the door, sending me home with nothing. Started medical marijuana the next day.

My story: BRCA2 genetic mutation, bilateral breast cancer (twice on the right side), got cut (surgery), burned (radiation therapy), and poisoned (chemo”therapy” – the usual treatments. That was 5-6 years ago. Now have some kind of neuropathy, which one of my neurologists considered to be refractive to most prescribed medications. My neuropathy is permanent, progressive, and seems to be getting worse by the day. At first, it was no doubt a “side” effect of chemo, (CIPN Chemotherapy Induced Peripheral Neuropathy). Over the last year or two, it may have changed into some other type of neuropathy. About all I can do anymore is make it from the bedroom to the bathroom. Hard to stand up or walk. Serious and progressive muscle weakness, legs feel heavy as lead, numbness crawling up my lower legs and forearms. Hands feel like fuzzballs, and my feet go berserk all day, every day with numbness and hyper-sensitivity. Have fallen several times, legs go out from under me. Balance and walking gait are shot. My next post will catalog the medicines and etc., that I have tried or are still using.

My story: BRCA2 genetic mutation, bilateral breast cancer (twice on the right side), got cut (surgery), burned (radiation therapy), and poisoned (chemo”therapy” – the usual treatments. That was 5-6 years ago. Now have some kind of neuropathy, which one of my neurologists considered to be refractive to most prescribed medications. My neuropathy is permanent, progressive, and seems to be getting worse by the day. At first, it was no doubt a “side” effect of chemo, (CIPN Chemotherapy Induced Peripheral Neuropathy). Over the last year or two, it may have changed into some other type of neuropathy. About all I can do anymore is make it from the bedroom to the bathroom. Hard to stand up or walk. Serious and progressive muscle weakness, legs feel heavy as lead, numbness crawling up my lower legs and forearms. Hands feel like fuzzballs, and my feet go berserk all day, every day with numbness and hyper-sensitivity. Have fallen several times, legs go out from under me. Balance and walking gait are shot. My next post will catalog the medicines and etc., that I have tried or are still using.

Prescribed Pregabalin, Duloxetine, Nortriptyline, Naloxone, Gabapentin, and Buprenorphine for neuropathy, none of which helped at all. Very bad adverse reaction to Naloxone, the horrible “side” (think “direct”) effects of which I struggle to describe. I was on my knees praying to God that it would wear off. A few days ago was prescribed Buprenorphine which, to my great shock and dismay, was, conservatively, three times as bad as Naloxone and forced me to go to the ER, where they did nothing helpful, however they did succeed in performing a useless chest x-ray, CT scan, and blood test, all clear as I knew they would be. An overnight hospital stay, then back home with the recommendation from my GP that I contact the Mayo Clinic where I might benefit from a team of experts looking at my case. Not sure why my medical team here is not a "team"? Communication breakdowns everywhere.