1st Time at Mayo for Chemo-related Neuropathy

Posted by rob59, Robbie Hinton @rob59, Thu, May 30 8:31am

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

Liked by Dee

@elizm

@colleenyoung @rob59 @geromino1
Rob, from what I've learned, Mayo had to stop accepting neuropathy patients because there were just too many wanting help and not enough neurologists to see them. Most neurologists (and GPs) across the country are faced with a large segment of their patient populations suffering from one form of neuropathy or another. Gabapentin (aka Neurontin) has become one of the top ten drugs prescribed for any condition, despite it having little evidence that it works for pain. Put this all together and you can see how desperate patients AND doctors are over this inscrutable situation.

I have CIPN from 12 weeks of Taxol (Paclitaxel) for early stage breast cancer, complicated by it being HER2+++. Ap. 40-50% of patients receiving Taxol encounter some degree of neuropathy from it. The neuropathy began within two weeks when my finger and toe nails went toxic (turning colors and eventually lifting off their beds). Alarmed, my oncologist reduced the amount of Taxol two successive times, but the neuropathy continued to spread… my feet, legs, hands, arms were the worst, but I also would have periods when the numbness traveled up my backside, spine, and to my face and head. Perhaps I was susceptible to it all because of my age. I had just turned 70, two days after my lumpectomy.

I have subsequently learned that there were other things which they could have done to lessen the impact, but they were not atuned to those choices for whatever reason.

Now comes the hard part. Oncologists do not treat neuropathy… nor any other issues caused by chemo (heart-, lung-, dental-, ocular-, muscular-, emotional-, vascular-related, for example)… which means that a patient must be pro-active and go in search of who or what may bring relief. This can be frustrating and often disappointing. Some people do find occasional assistance with varying results.

I am unable to tolerate the pain prescriptions like gabapentin, amitriptylin, venlafaxine, opioids, etc.

I tried acupuncture, Calmare Scrambler Therapy, low-level laser therapy, various lotions/potions/creams (including those containing CBD) and pills, myofacial release therapy, and physical therapy. The foot of my bed is tented so that my bed covers don't touch my feet. I live in sandals to avoid socks and closed shoes. I use a special compounded cream for the petechiae on my feet which comes with a flare or too much exercise. I frequent a specialist in myofacial release therapy as the neuropathy has bunched my muscles into what she describes as "steel ropes." I attend (two-hours a week) a rigorous balance class with a physical therapist. Do a mile/day on a treadmill on non-class days, and do the exercises recommended by all the therapists in the evenings… despite extreme fatigue from the neuropathy. In other words, it's struggle to keep going.

For me (and I can only speak for myself), the OTC products which have helped are (1) Palmitoylethanolamide (PEA) which I purchase on Amazon (ErgoMax OptiPea from the Netherlands), (2) Topricin Fibro Cream, also from Amazon, and (3) Zhi Bai Di Huang Wan (an herbal supplement) which I get from a doctor of Chinese medicine & acupuncturist.

NOTE: I would not recommend buying the Chinese herbs over the internet or at a health foods store (I get mine from the doctor of Chinese medicine). It is a 200 yr. old traditional remedy for postmenopausal women experiencing hot flashes. Although I don't have hot flashes, it turns my feet and hands icy cold which is preferable to having them on fire. One of the herbs can raise hemoglobin as it is used to aid those with anemia (which I also don't have).

NOTE: The Fibro Cream is mostly arnica… nothing in it is pharmacological. It works within about 20 mins. for me.

NOTE: I came across the PEA as it is used in several European countries by neurologists for pain from various pathologies. Do not buy anything which is not ultramicronized (or it won't be bio-available), and avoid anything which has added B vitamins (B6 especially is toxic to nerves). Mine come as 400 mg capsules. I started taking it twice/day. It began working for me in about 3 weeks. Six months later, I often take it 3 times a days. Some clinical trials have used up to 2,000 mg/day for those with CIPN (that would be 5 of my capsules/day). It is a natural fatty acid amide and has no known drug interactions nor side effects (although I find that it makes me gassy/bloaty if I don't take it with a meal or some simethicone). After my "success" with it, my GP is taking it for his neuropathy. I occasionally switch back and forth with the Chinese herbs as I think my neurological system gets used to one and tries to ignore it, or wants me to take an increased dose.

The following may be of interest to you:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/
https://www.ncbi.nlm.nih.gov/pubmed/28727699
https://www.ncbi.nlm.nih.gov/pubmed/26815246
https://link.springer.com/article/10.1007%2Fs10787-013-0191-7

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Elizm- thank you for the product recommendations, I am wanting to try PEA now! I researched a bit, comparing brands and do not see that the Ergomax is micronized"

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@wisfloj

Elizm- thank you for the product recommendations, I am wanting to try PEA now! I researched a bit, comparing brands and do not see that the Ergomax is micronized"

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**Sorry hit send too soon- is this brand recommended for a specific reason? What are the important criteria to look for?
Thank you for any further help re: PEA

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@wisfloj

Elizm- thank you for the product recommendations, I am wanting to try PEA now! I researched a bit, comparing brands and do not see that the Ergomax is micronized"

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@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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Okay, thank you for your reply and sharing your experience. I thought about Calmare therapy and hoped there were some success stories here, none yet.

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@wisfloj
Mayo does note on its website an employee success story back in 2012? with Calmare Therapy, and, when you research the web for reviews, you will find various and mixed results trials… some people have found it beneficial, however. You should be aware that insurance doesn't cover it in any event. (My personal opinion: it may be that practitioners don't want to stick with the patients and adjust treatment accordingly because it takes too much time… that it's easier and more cost-effective to get a non-medical office assistant (in my case, the receptionist….) to conduct the sessions, albeit "trained." After two sessions, I backed-out.)

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@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/

Liked by Lisa Lucier

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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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