Neuropathy in both feet caused by chemo; no guidance from oncologist
 

Hi! I'm 68 years old and got a neuropathy in both feet after I had chemo. Right now the neuropathy isn't too bad -- mainly numbness and tingling in both feet. Lately though, I've noticed the neuropathy growing in intensity and have felt the occasional painful pin/needle... I really enjoy exercising and my favorite exercise is fast walking which I've increased lately as the weather gets nicer. . I can't do more than that due to a knee replacement which was just a partial success.

I'm wondering if the exercise can be aggravating it -- and I don't want to decrease exercise if I can help it. It really helps me cope with stress but I don't want to get to the point where I have to be on meds to control pain.

Questions: 1. Is there any way I can slow down the progression of the neuropathy?
2. Are any vitamins/supplements working for you and how so?

Thanks in advance for your replies. I'm glad to have found this group.

Hello,
If you scroll to the bottom of this page there are related past posts to explore, or use our search tool to find more posts on chemo & PN.
Each of our forums has sticky threads of saved & useful info linked near the top of their main page.

The PN forum has supplements info and discussions on those..

Welcome JaneClaire. :Wave-Hello:

I would exercise as much as possible--
 

--basically to tolerance, as moving oxygen and nutrients into the damaged areas and moving toxins out is a definite prerequisite to whatever healing you may be able to get (and nerves do heal if the damage process can be removed, although they heal more slowly than just about any other bodily tissue).

I'm not surprised you didn't get much information from the oncologist; in my experience most of them feel out of depth talking about neuropathy from chemotherapeutic agents, even though many of those are notoriously neurotoxic.

Welcome, JaneClaire!


If you're taking any meds at all, I hope you've looked them up to find out what their possible side effects are. Often prescription drugs turn out to have quite a few neurological side effects, and sometimes a simple adjustment in the dosage (or eliminating that drug entirely) can make a huge difference.

Usually exercise is beneficial, but I've known of some instances where it wasn't advised. Have you thought about physical therapy?

Jane: I have posted a lot here on neuropathy and a good friend has dealt with this issue from chemo and radiation and statins and took all the drugs the docs give out, and finally she got wise and started with Grape Seed Extract probably 13 yrs ago or so and is much improved.

I've been taking Grape Seed Extract since 1995 and also for the neuropathy I deal with, from surgery, I've had great results with

Inosine and Sphingoln and PureFormulas sells both of them.

I would NOT push the extreme exercise, mild and constant is good. Reduce sugars/refined carbs too.

Hi JaneClaire, welcome to NeuroTalk.

Wondering how long ago you had the chemotherapy?

Some of the other cancer treatments like targeted therapy and immunotherapy cause peripheral neuropathy as well. My Oncologist is an absolutely wonderful doctor and he is aware of my neuropathy that was caused by a combo Targeted Therapy that only lasted for 10 days of treatment. It started off really bad and then I started to feel a little better for a while but now it's again progressing with Immunotherapy (for met melanoma) but basicially doesn't seem to be part of his job to talk about it for some reason. :confused: I find it disturbing actually.

Same with the Oncology nurses. It's as if all these life altering side effects are the norm and they're basically so used to seeing it happen that it's like nothing. ugh.

I have this belief that if I stop moving then I'll never start again so I keep moving, pain or no pain. I push through. Obviously sometimes it's too much so have to rest. Figure out your own pattern. If you have flares from walking too much, slow down. If you have flares from other things, like different foods, or illnesses, work out what you can do about those too.

Apparently some people seem to have their treatment related neuropathy get a lot better after some time. I don't know that it can ever be totally gone. That doesn't seem possible to me or for me at this time with ongoing treatment for years. My main tips would be...

Wear good shoes.

Watch your diet regarding blood sugar levels.

Take care of your feet - toenails especially.

Check out the PN subforum... lots of tips and ideas in there that may help you.
https://www.neurotalk.org/pn-tips-re...er-treatments/

Oncologists/Haematologists here where I live, are very much oriented towards their own speciality only. Probably the same everywhere these days. The Oncologist or Haematologist doesn't treat anything except the cancer. You could to ask for a referral to a Neurologist if you need help with it. Your Oncologist can refer or your GP can. My Oncologist usually sends me off to my GP for anything not melanoma related but he's excellent in that he continually sends updates to her regarding my progress.

The PDF below is from where I live in Australia. There are better sites I'm sure but I like this one set out in brochure form. Some of the treatment options they mention aren't for me personally but there is some helpful info about self-care near the end. Part of page 5 and 6.

https://www.cancer.org.au/assets/pdf...ral-neuropathy
Understanding Peripheral Neuropathy and Cancer

take care there.

Thanks for your long and thoughtful reply. I will check out the websites! I so agree with everything you wrote and also find it disturbing that the oncologists don't seem to care about this side effect and know nothing about it except that chemo caused it. My oncologists reaction when I told himm aboutit worsening was: "I'm not surprised". And had no other 'advice'... He seemed to think that I was really strange for asking for a consult with a neurologist. I figured I had nothing to lose and maybe from neurologist's experience, he might have something to offer. Anyway, I won't go on about my oncologist; suffice it to say that if I could switch, I would. I live in Canada and it's really difficult to make a switch.

I finished chemo about 8 months ago. I am now on a TKI and it seems to have a peripheral neuropathy worsening in about 2% of cases - with my luck, that's probably me! Hope not.

I also cannot give up exercise. I've always exercised and find it so vital for stress control.

Anyway, thanks again for your reply and wishing you all the best on your cancer journey.

May I ask why you said to take care of toenails. I'm asking because I have a couple of weird toe nails and seeing a podiatrist in a couple of weeks. But I had those toenail problems before chemo... I can't even describe the problem

Thankyou. All the best to you as well.

I mentioned the toenails because the cancer treatments can have an impact as well as the neuropathy since you mentioned you had numbness. There's a lot of information available about how cancer treatments affect nails. i.e. shape, ridges on nails, fungus, texture, pain in nail bed. etc.

If you haven't had any new nail changes and your chemo stopped 8 months ago then I would think that is a really good thing. It's possible that you'll get some recovery in your feet you know. I wouldn't give up on expecting that. I guess that depends how you go with the TK inhibitors. Hopefully gently!!

We all have different experiences. My experience with the BRAF and MEK inhibitors was extremely bad, but I do know others did well on that. I'm disease free (for now) on Immunotherapy and that was totally unexpected at stage 4, so I know there is a bright side to all this pain.

Keep fighting. I know it's a really horrible, horrible time, but I believe our attitude helps so much.

Welcome to Neurotalk Jane.

I hope that the comments from Lara will help you.

Best wishes.