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Best department to get help for Chemo-related Neuropathy?
Cancer: Managing Symptoms | Last Active: Sep 1, 2021 | Replies (76)Comment receiving replies
@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
Replies to "@colleenyoung @rob59 @geromino1 Rob, from what I've learned, Mayo had to stop accepting neuropathy patients because..."
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!
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"
@elizm Hi there, I have been reading and posting almost exclusively in the neuropathy discussions for about 8 months and only just this morning did I read a post by @colleenyoung Colleen in which she gave someone the link to this discussion, which I was not aware of because it is placed under the cancer symptoms discussions rather than neuropathy. Seems like it would be helpful to have it in both places (Colleen 😉 just wondering if that is possible?), She no longer has a cancer issue so I haven't thought to look over here.
My wife Linda who is 73 has had debilitating post-chemo burning in her feet for 6 years, but becoming much worse in the spring of '19. I am her advocate for online stuff as she does not connect with anything that is computer technology related. I decided to start reading all of the posts in this discussion and after a few posts came across this one by you. I am intrigued by your mentions of all the things you have tried and that you are aware of. I have heard of many of them, Linda has tried some of them, but not all. The thing that jumped out at me that I have NOT heard of is PEA.
Now your post which I am replying to is from June '18 and I am wondering, are you still taking it and is it still effective for you?
Also, I have been hearing a lot of mentions by many people about myofascial release. Are you still doing that and has it been helping your PN symptoms do you think? I know Jennifer Hunter has tons of info about it but it has not been clear to me up to now whether it is that good for PN specifically.
I will leave it there for now. I easily find my self starting posts and writing mini novels but in this case I am, first and foremost, focused on wanting to get your take on these two things. Looking forward to hearing back and continuing to correspond. Best to you, Hank
To @elizm thank you so much for this part of your post: 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.
My oncologist is like this and has the bedside manner of rock. I cannot believe how she NEGLECTS all the side effects that her chemo treatment gave me. I ended up with a severe staph infection (staphylococcus) on all my toenails lost two large nails to infection. I showed her when it started and she just brushed it off, saying it's the chemo. I finally found a dermatologist in the same hospital. She said this never should have happened and that because one of the toes had been bleeding I could have ended up in the hospital with septicemia. Forget frustration. I'm mad as hell that someone that is an oncologist can get away with being downright irresponsible and now I'm hearing it's the norm? She takes notes, orders tests, and that is her big grace. This is so wrong, and so unethical. The rest of the team for cancer, my cardiologist, and the cancer surgeon are nothing like this oncologist I have. :*(
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Thank you for your info. I will follow up the things that have helped you and see if they do the same for me. What is the address and cost of products from Nederlands?