Best department to get help for Chemo-related Neuropathy?

PQQ is a supplement that has been in use for other conditions. It is hard to find in most drugstores, so I order off Amazon (no kick backs here). I really hope it helps you. It’s not an instant cure, but I stayed with it when I first noticed how much better my hands felt. Feet take a little longer, but the results have been a steady improvement. I will continue with this regime until there is a verifiable cure.

I haven’t seen this on any of the Mayo Clinic sites. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for almost two and a half years with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have pain in my feet, but much improved. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, I can only say what it’s done for me. With Hope. Janet Davis

@jdavis823 I would love to read that Cleveland Clinic study. Might you have its website url?

@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