Chemo-related Neuropathy

Posted by rob59, Robbie Hinton @rob59, May 30, 2019

What’s the best Department at Mayo Clinic to get started from for someone who suffers with neuropathy from chemo treatments? Suggestions...for a friend!

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@johnbishop

Hello @jeffrapp, welcome to Connect. Thank you for posting. I also have idiopathic small fiber peripheral neuropathy only I just have the numbness for a symptom in both feet and lower legs. From what my neurologist told me only about 10 to 20% of those with PN have just numbness...not that it makes it any better. I'm with you on the warm weather. For whatever reason warmer weather seems to loosen the body and help with a lot of autoimmune conditions. Since you mentioned burning feet as one of your symptoms, there is another discussion you may also be interested in reading through.

> Groups > Brain & Nervous System > Burning Feet syndrome
-- https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

You mentioned PubMed which is a great resource to help someone be a better advocate for their own health. Have you ever used Google Scholar (https://scholar.google.com/) to find medical research type information? I use it a lot because I like the feature of being able to sort the search results by year to get the latest information.

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Hello @johnbishop
Thanks for the tip. I didn't know that site existed.

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@jeffrapp

Hello @johnbishop
Thanks for the tip. I didn't know that site existed.

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@jeffrapp another discussion that might be of use for searching within Connect to find discussions...

> Groups > Just Want to Talk > Search - It can help you!
-- https://connect.mayoclinic.org/discussion/search-it-can-help-you/

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Referral to lymphadema clinic. I see an OT (occupational therapist) who has special training in lymphadema care.

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Hello @margaret2 -- I also have lymphedema in my legs. I wear compression socks as a treatment. You mentioned you had surgery to remove the lymph nodes on your left arm followed by chemotherapy treatments in an earlier post. Are you able to share a little more about the therapy from the occupational therapist specialized in lymphedema care?

I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where it will have more visibility with members who have similar symptoms and lymphedema prevention is discussed.

> Groups > Breast Cancer > BP, IVs and blood draws after bilateral breast cancer w/node removal
-- https://connect.mayoclinic.org/discussion/bp-ivs-and-blood-draws-after-bilateral-breast-cancer-wnode-removal/

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@elizm

@wisfloj
I really don't want to get into the product recommendation business. I spent an inordinate amount of time researching PEA last year and eventually drew my own conclusions and have written about my results. At that time, availability also played a part as the one American producer was including B6 (which can be toxic to nerves). If you have questions about OptiPEA, it probably is best to direct them to ErgoMax at https://www.ergomaxsupplements.com/palmitoylethanolamide-pea-optipea
I've also used peaCURE, but I reacted more positively to the OptiPEA.

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I am on day 3 with Ergomax Optipea. I’m trying to be patient for it to kick in, unfortunately these last few days are some of my worst, coincidental I’m sure. I plan on 2 months trial taking 2 per day. Then if ineffective moving on to Calmare therapy $$$$$$$$$ (I think). Thank you for recommending PEA, I researched, watched videos and concluded it’s very likely to help.

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@wisfloj

I am on day 3 with Ergomax Optipea. I’m trying to be patient for it to kick in, unfortunately these last few days are some of my worst, coincidental I’m sure. I plan on 2 months trial taking 2 per day. Then if ineffective moving on to Calmare therapy $$$$$$$$$ (I think). Thank you for recommending PEA, I researched, watched videos and concluded it’s very likely to help.

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Wishing you the best of outcomes... hang in there! (If I were you, I would likely move to 3 per day on bad days. When I started with PEA, I also was taking the Chinese herbs. Without the herbs, 3 per day likely would have been more efficacious sooner?) We're each a chemistry experiment with neuropathy....

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@elizm

Wishing you the best of outcomes... hang in there! (If I were you, I would likely move to 3 per day on bad days. When I started with PEA, I also was taking the Chinese herbs. Without the herbs, 3 per day likely would have been more efficacious sooner?) We're each a chemistry experiment with neuropathy....

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Thanks, perhaps I will increase to 3x. I also started acupuncture and it is nice and relaxing but not effective for neuropathy as of yet. For anyone who is on a budget, or likes reasonably priced care, check out POCA community acupuncture, fee is on a sliding scale, different type of environment, but very competent. Limited locations, I lucked out!

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Chemo exacerbated my existing neuropathy and several years later my balance is terrible. I now use a triangle shaped lightweight rollator for to keep from falling when I leave home. Aside from PT does anyone have any tips for balance?

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@nwhubert

Chemo exacerbated my existing neuropathy and several years later my balance is terrible. I now use a triangle shaped lightweight rollator for to keep from falling when I leave home. Aside from PT does anyone have any tips for balance?

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@nwhubert I want to caution you about a 3 wheeled rollator (kind of like a tricycle to walk behind). They can easily tip over sideways if you loose your balance, and your center of gravity is a lot higher than the equipment. If you caught your foot and tripped on it , it would probably fall over. A 4 wheeled rollator is more stable and won't tip as easily. They are not very expensive if you had to pay for a new one and often you can find them in thrift stores or used medical equipment stores. You can also use a scooter that you sit on and propel with your legs. Both of my elderly parents had broken bones from balance issues that caused falls and recovery from that when you are elderly is difficult and brings some permanent disability with it. My mom is using a wheelchair now because she has bad balance and deformed feet as well as neuropathy in her feet.

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@nwhubert

Chemo exacerbated my existing neuropathy and several years later my balance is terrible. I now use a triangle shaped lightweight rollator for to keep from falling when I leave home. Aside from PT does anyone have any tips for balance?

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@nwhubert Good evening. Thanks for joining Connect. I am wondering if you have numbness in your feet. Do the soles of your feet feel like stiff leather when you walk or are you able to feel the grass or the carpet under your feet? My balance is much improved since completing several sessions of Myofascial Release Therapy (MFR) with a focus on my feet so that I could drive again. Be safe and have a great sleep tonight. Chris

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