Need hope: Neuropathy from chemo

I've watched "Nine Lives" at least two times. Now I'm thinking I'll watch it again. It's a favorite for me, too.

I am having lots of trouble walking th this also

Is there anyone in this group that has experienced a worsening of neuropathy 2+ years after receiving final dose of chemo AND after a prior lessening of symptoms? I ended chemo (5fu and oxaliplatin) in April 2019 with PN hitting hard in my hands and feet. I was told by my oncologist that this PN might dissipate over time, might go away, might be permanent, but would not increase after 6 months to a year as the chemical would no longer be active in my body. Summer of 2020 the neuropathy was still present (numbness and tingling) in my feet and hands, but was noticeably less especially in my feet. Last spring I felt the neuropathy getting worse in my feet first, but then also my hands. Over the course of the last year and a half, it has crept up my legs and arms, into my pelvis, onto my face and tongue some of the time, and I'm questioning if it is starting more in my trunk. I have been to a local neurologist, had MRIs, boat loads of blood work, nerve studies, and most recently was seen at Cleveland Clinic. The blood work has all been negative/normal, as have the MRIs. The nerve study shows pure sensory neuropathy and my neurologist has said this points to my chemo as the culprit. As this conflicts with what I had been told previously about chemo induced neuropathy, and the fact that it has not yet quit spreading, I'm struggling to accept this diagnosis. Finding other folks who have experienced something similar would be really helpful!!!

Does anyone else have this problem?

I now have neuropathy in my feet as a result of chemo. My last treatment was six months ago and nothing has changed. My feet are basically numb with enough feeling in them to be able to walk slowly. I can't close my eyes while standing like in the shower or I lose my balance. I do toe stretching exercises. I also use something called PowerLegs by PowerFit. It has various settings to stimulate the bottoms of your feet. My Dr suggested it. I don't know how much good it dose but I feel better doing something.

There is no medicine that will cure neuropathy. There are medications that manage the pain. Though I don’t know if any cure neuropathy, there is a thread regarding supplements that show promise. The link is:
https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

I've had chemo induced neuropathy for two years. It's in my fingers and feet (feet are the worse) along with some balance issues. My understanding is the majority of improvement comes in the first year. Walk as much as you can. I had severe balance issues also while in the shower, but it eventually went away. I'm left with some numbness, and for some reason I can't really stand still in one spot without swaying a bit to keep my balance. But amazingly enough when twice last winter I slipped on the ice, I was able to recover my balance without falling or grabbing onto something. (I'm 67 by the way). I think that (safely) testing your balance often also helps. If offered Gabepentin, be aware It's only for pain and doesn't treat the numbness. I use it very rarely. Good luck.

Hi @1973 and welcome. You'll notice I moved your post to a long standing conversation about Neuropathy from chemo.
Need hope: Neuropathy from chemo
https://connect.mayoclinic.org/discussion/needshope/?pg=7#comment-742213
Can you give us a little more information about your problem? When did it start? What treatments have you sought so far?

What have you found helpful for neuropathy [hands and feet] from chemotherapy with cisplantin?

Hi Cara, welcome. I have included your question about neuropathy related to cisplatin to this existing discussion in the Cancer: Managing Symptoms group. See here:
- Need hope: Neuropathy from chemo: https://connect.mayoclinic.org/discussion/needshope/

You may also be interested in these related discussions:
- Chemo-related Neuropathy: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/
- Does anyone have a treatment for Neuropathy due to chemo: https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

Fellow members @needshope78 @dlmdinia @valentinaz @loribmt @elizm @tessie63 @2onlow8 can also share their experience with you.

Cara, are you currently in treatment or have you rung the chemo bell? May I ask what type of cancer you were diagnosed with?