Vent about Permanent Neuropathy

Annie60: I got neuropathy in both feet after taxotere and taxol treatments. I was given Cymbalta and Gabapentin. Unfortunately, I didn't get any relief. Years ago, I tried the same combo for shingles and they didn't work then either. I didn't have any side effects from Cymbalta but got sleepy with Gabapentin. Sometimes, I soak my feet in an Epsom salts bath and it seems to give some temporary relief. Now, I'm trying the topical creams like Blue Emu and Lidocaine to see if that can help. It's very annoying especially when trying to sleep. Try the drug combo for a little while. Maybe you will be one of the lucky ones and get relief. Hopefully, the side effects will go away in a few days. Good luck!

I tried acupuncture for several months but it didn't seem to really help. After COVID, I might try again.

I am just starting Gabapentin for the neuropathy in my feet. Other than the sleepiness, is anyone else experiencing other side effects? I also use CBD oil to sleep. Will the 300mg capsules work with that? How long does it take for the medication to make a difference? Sure hope this works. No pain, but having balance issues with my feet being numb all the time.

The best remedy for the numbness is foot massage. It wakes those nerves up. There may be a tradeoff with pain, though.

Hi - I've been on Cymbalta for about 2 years - I switched to it from taking Zoloft (for anxiety) and Gabapentin so I could take one less pill and not have the drowsiness from Gab. I think it's working well. The neuropathy in my feet has improved over time (3.5 years) so now I only have a medium to mild “electric zinging" sensation on the very bottom of my feet. I don't think the improvement is from Cymbalta tho - I think it is from massage and walking to stimulate the nerves. I still only wear very cushy flat or very low heeled shoes. Going barefoot, even in the house is still uncomfortable.

I did try acupuncture during and after chemo and it did help but I didn't keep it up.

Lanne

WHY WHY WHY??!! Why do my feet feel OK during the day- numb with an occasional zinger but when I try to sleep at night, they are so painful - burning and hurting? I can nap during the day, no pain. Let the sun go down and I’m ready to sleep for the night - pain!!! I take two gabapentin before going to bed. I’m exhausted

The Gabapentin seems to be helping, at least at night. I did overdo it some last Saturday. I helped the yard person do some trimming on azalea beds and redtip shrubs. My job was to drag all the clippings to the street. I probably walked miles! My feet finally calmed down Sunday night after resting most of the day. Has anyone tried rolling your feet on a frozen bottle? I have done that before when I have had tendon trouble. The PA suggested a foot soak in warm water. Seems like there are treatments, but no actual cure for this situation.

I'm stage 4 now & doing taxol again (in combo w immunotherapy) but this time, there's no end date. My first scans showed overall stable so I stay on.

I've had 7, already dose reduced due to liver fnxn tests being really bad.

I'm trying to ice but before I was allowed to have someone come help me. Now with covid I'm alone in there & I think I'm not doing as good a job.

my nails all feel bruised & sore. the tips of my fingers feel numb but I can still do buttons, write etc. But it's getting worse & it seems that my situation is to get some control over my terminal cancer at the cost of my fingers My feet are a bit better - just a bit tingly occasionally.

Because I'm in a study, I cant just take things. Every supplement and prescription has to be approved and many aren't.

They did approve B6, B12 and l-glutamine. I take B6 100 mg every day. Should I be doing that? Or just around the days of the treatment?

I don't take B12 because I have very high levels when it was tested.

I stopped the l-glutamine when my liver fnxn tests went through the roof because glutamine is a precursor to glutamate and I read something about it affecting the liver and we didn't know what was screwing up my liver levels so we eliminated acetaminophnen, I dropped the glutamine and we reduced the taxol. My liver tests are still not 100% normal but the MO is no longer freaking out. I was having to get liver blood work every 3 days for a while!

Anyway - I'm thinking of gently restarting the l-glutamine. Maybe a small dose only? Only around treatment days?

mostly I'm just whining ..... every time I type I get reminded of it now

It's already blazing hot here, but thanks to neuropathy I have to wear socks at the very least to keep my feet from driving me crazy. It's a mix of aching and cold, the sensation is hard to explain. Im just whining, I can't do much else.

I'm not sure what I have. 2 weeks after chemo I had bad pain and numbness in my arms and hands at night laying down. It kept me up and I was miserable so the Dr. gave me dexamethasone. I took that about 5 weeks and felt great. I went off it. Numbness came back, but not as bad, in addition to body aches and pains. Every morning I wake up and my hands are numb. But after I get up and get the blood flowing they are mostly ok. Is that neuropathy? or inflammation? or both? Did I ask this before, because I think I have some memory loss, lol. And CMF chemo is not supposed to cause neuropathy.

JRNJ - are you taking an AI?

Lots of new pages & posts since I last visited.

Agree with all those that are encouraging walking and moving and massaging the feet. Blood flow is going to stimulate healing.

My feet used to be dull achy, numb lumps that hated cold. A heating pad under my desk (in Winter) was a BIG help.

I have no experience or suggestions with the burning, zinging sensations. What about CBD cream?

I am 7 YEARS post a platinum-based chemo and I have continued to improve every year. After the first year or two, it slows to a snail's crawl but I have gotten better and not worse. Now if only I could live 50 more years, I might have my old feet back.

To those at the two year point...some improvement still to come. A little, at least.

I have some pvc pipe I got for pole beans a few years ago. I put them in my garden this spring to support my pea plants, and once they were gone to support tomato plants. I just pulled the peas, but I also discovered that the poles are good to prevent falls while stepping around zucchini plants or strawberries. I am going to get another pole, and just leave them in the garden.

A sciatica storm a few weeks ago has weakened my right ankle again ( I am now on 2700 mg Gabapentin). I had an appointment for a PT eval so I can get on the underwater treadmill at the hospital. But I had forgotten to call the transportation service, and the taxi was going to be 30 minutes late, so I had to reschedule. The recumbent bicycle at the gym is nice, but I would like to do something else.

I had not been using the cream for my feet during shutdown. I had not asked for a renewal of the authorization to bill a local charity for the cost. Got that done and asked for CBD to be added to the recipe, but the pharmacist called me today, and it would double the cost. Do not want to do that, when others might have more pressing needs.

Sunday I went to the gym, and tried to do my standard workout, but was just too tired. Talked with the trainer, and we mapped out how often I had been going to the gym. A week and a half daily, previous to that it had been every other day. I was overtraining. So today I am exerting a conscious effort to avoid going to the gym.

that podcast is informative but from 2 years ago - not that much has changed in neuropathy world. The thread just got bumped.

Oh gee Moth - so sorry I didn't look at the date. Still I was interested to learn the mechanics of how the various drugs "kill" the cancer and the nerves. Guess I jumped on it because my neuropathy always seems to "spread" when it gets colder.

I'm going to PM the MODS to see if they can get an updated interview, and I'll include your question Lisa.