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Chemotherapy-induced neuropathy: What helps get rid of it?
Cancer: Managing Symptoms | Last Active: Oct 21 2:04pm | Replies (98)Comment receiving replies
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.
Replies to "My story: BRCA2 genetic mutation, bilateral breast cancer (twice on the right side), got cut (surgery),..."
I know of only two prescription drugs, from personal experience, that help relieve my neuropathy symptoms: Hydromorphone HCL (Dilaudid), a synthetic opioid, and Zolpidem Tartrate (Ambien). That’s right – the sleeping pill Ambien, a sedative-hypnotic. An analogy might be to consider neuropathy as a type of “fire”, with Dilaudid being a “fire extinguisher”. Been trying to get a prescription for Dilaudid but no luck. As a last resort, I am now using medical marijauna, suggested to me by a palliative care nurse, which I think is analogous to fighting fire with fire. It helps some. I am also taking all the known supplements that may support the body’s efforts to repair or even regenerate dead, damaged and dying nerve tissue. Doing Epsom Salt warm foot baths, Lidocaine cream on my feet, both of which, along with light exercise and whatever else I can discover, provide some temporary relief. It does not seem likely I can reverse this neuropathy, stop the progression of it, or even slow it down. However I am giving it the college try.
Hello @erichendrix and welcome to Mayo Clinic Connect. I can sense your frustration and exhaustion in your post. You have been through quite a long journey with your health, and those feelings are normal.
I wonder if you have been offered an appointment at a pain clinic that can help when other measures aren't working? Here is some information if you're interested in reading more:
- Pain Medicine: https://www.mayoclinic.org/departments-centers/pain-medicine/sections/overview/ovc-20450061
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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.