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!

@geronimo1
As noted, ErgoMax OptiPEA is sold on Amazon (and shipped from the Netherlands).

REPLY
@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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Dear Elizm
Yours was a wonderful post! Thanks for all your hard work.
I am a physician, diagnosed with idiopathic small fiber peripheral neuropathy about 18 months ago, although, in retrospect, I had the symptoms for some time before the diagnosis. I have had the million dollar work/up at my local university, including a skin biopsy, which was positive.
Interestingly, my diagnosis of PN coincided pretty closely with the sudden diagnosis of other problems, including abdominal B-cell lymphoma, prostate cancer, and a weird one (oncocytoma of the kidneys). All of them, other than the PN, are very slow growing, and so far, have had no effect on my life. It's very hard not to think that one or all of my other diagnoses have something to do with the PN, but so far all my docs, including neurologists, oncologists, internists, urologists, etc. can't make a connection.
The PN, on the other hand, has had a dramatic negative influence on my life, although, as is common, everyone tells me I look healthy. It's like a bad joke. My symptoms are primarily severe burning when wearing shoes and socks, and freezing when going barefoot. In the last few months, it has been effecting my legs, so that pants and bed sheets are uncomfortable.
I have tried all the usual treatments. The only thing I can say helps for certain is warm weather! Interestingly, even when the sun is just out, I feel much better. To me, this indicates a psychological component. The other thing that may be helping is Duloxetine, I just started it 6 weeks ago, which is sometimes how long it takes to work, and now that the weather has turned warm, it's hard to know which one (if either) is responsible.
Elizm, I really admire the detailed and ordered approach to your post. In particular, I appreciate your references to articles in PubMed, which, of course, I use frequently myself. Are you a medical professional?
At any rate, should I relapse (which wouldn't be a surprise; as we all know, PN is a moving target), I intend to try at least some of your remedies.
Thanks again!

REPLY
@jeffrapp

Dear Elizm
Yours was a wonderful post! Thanks for all your hard work.
I am a physician, diagnosed with idiopathic small fiber peripheral neuropathy about 18 months ago, although, in retrospect, I had the symptoms for some time before the diagnosis. I have had the million dollar work/up at my local university, including a skin biopsy, which was positive.
Interestingly, my diagnosis of PN coincided pretty closely with the sudden diagnosis of other problems, including abdominal B-cell lymphoma, prostate cancer, and a weird one (oncocytoma of the kidneys). All of them, other than the PN, are very slow growing, and so far, have had no effect on my life. It's very hard not to think that one or all of my other diagnoses have something to do with the PN, but so far all my docs, including neurologists, oncologists, internists, urologists, etc. can't make a connection.
The PN, on the other hand, has had a dramatic negative influence on my life, although, as is common, everyone tells me I look healthy. It's like a bad joke. My symptoms are primarily severe burning when wearing shoes and socks, and freezing when going barefoot. In the last few months, it has been effecting my legs, so that pants and bed sheets are uncomfortable.
I have tried all the usual treatments. The only thing I can say helps for certain is warm weather! Interestingly, even when the sun is just out, I feel much better. To me, this indicates a psychological component. The other thing that may be helping is Duloxetine, I just started it 6 weeks ago, which is sometimes how long it takes to work, and now that the weather has turned warm, it's hard to know which one (if either) is responsible.
Elizm, I really admire the detailed and ordered approach to your post. In particular, I appreciate your references to articles in PubMed, which, of course, I use frequently myself. Are you a medical professional?
At any rate, should I relapse (which wouldn't be a surprise; as we all know, PN is a moving target), I intend to try at least some of your remedies.
Thanks again!

Jump to this post

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.

REPLY
@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

Jump to this post

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"

REPLY
@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"

Jump to this post

**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

REPLY
@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"

Jump to this post

@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.

REPLY

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.

REPLY

@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.)

REPLY
@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.

Jump to this post

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

REPLY
@jeffrapp

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

Jump to this post

@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/

REPLY

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

REPLY

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/

REPLY
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