Need hope: Neuropathy from chemo

Posted by needshope78 @needshope78, Apr 24, 2020

Is there anyone going through neuropathy from chemo. If so how long until my mother will be able to walk again afterwards. It’s been 8 weeks every week gets worse

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

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@1973

Does anyone else have this problem?

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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?

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@1973

Does anyone else have this problem?

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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.

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@1973

Does anyone else have this problem?

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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/

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@1973

Does anyone else have this problem?

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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.

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Does anyone else have this problem?

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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!!!

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I am having lots of trouble walking th this also

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@loribmt

I did see this, Helen! One of my favorite movies with him. 🙃

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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.

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@tessie63

I am so sorry to hear about your ongoing battle with cancer and I’m sure your treatment with radiation takes a toll on the emotional and physical aspects of your body. It would be nice for you to get it over with already and carry on with life.
I live in cold Saskatchewan, Canada. I prefer the warmer months here but, unfortunately, that is the shorter season here.
You are indeed lucky to be treated by the clinic in Rochester. I was there for the treatment of sarquidosis years ago. Our health care system sucks here! My friend has been waiting for over two years now to have her colonoscopy. For most of us, going to the US is just too expensive. The surgeries here have been held up due to Covid and we are experiencing a lack of nurses and doctors now to man the hospitals. Many were burnt out and just did not return. If your doctor recommends any number of tests you could wait months to get them. It’s
sad for so many who need care now and can’t get it.
I wish you the best of health in the future. You sound like a strong very upbeat person. Remember, we are both on the right side of the grass, for now anyway so we just have to make the best of each day. If I sometimes feel life is not fair I go off by myself, taking a good supply of kleenex, and have a good cry about it. It makes me feel so much better! Keep in touch.
Carol

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@tessie63 Carol, Thank you so much for your what you wrote and especially for your final paragraph. It is validating to think about how we are both "above ground" or "The right side of the grass", isn't it? It's a good reminder to me to make the best of every day.

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