That's all so far. Not enough to affirmatively declare that peripheral neuropathy (PN) is upon me, but enough to be a little scared. PN can be very painful and, when body parts go numb, rather disabling as well. It usually begins in the sensory nervous system, but can even progress to the motor nerves, resulting in partial paralysis. It is to be avoided if possible, and in my opinion it should be accepted as a necessary consequence of treatment only if all other avenues of treatment have been exhausted.
In Myeloma patients PN can be caused by at least three different things:
- Myeloma-specific chemo drugs such as thalidomide. I'm not taking thalidomide any more, but am taking CC-4047, a thalidomide derivative.
- Dexamethasone (DEX), which I am taking, and which (I believe) can cause symptoms of diabetes, one of which is PN.
- The myeloma itself, especially if protein or light-chain counts are high. Mine are not, as of two weeks ago.
In the meantime I'm trying to learn about it, and do whatever I can to mitigate the problem. Happily for me, the leaders of the Minneapolis Myeloma Support Group handed out a sheet of information on PN treatment at yesterday's monthly meeting.
Dana-Farber Cancer Institute:
That sheet, it turns out, was a printout of a web page which was transcribed from a paper handout at Dana-Farber. A myeloma survivor (Beth I think) has posted that handout HERE on the website MMSupport.net, which also has lots of other good information about myeloma and treatment. To summarize the sheet:
- Multi-B vitamins with B1, B6, B12, folic acid, and the other B-vitamins. Dosages: B6 100-200 mg, folic acid 1-2 mg.
- Vitamin E 400 IU daily.
- Fish oils with the omega-3 acids EPA and DHA.
- Evening primrose oil capsules.
- Flax seed oil.
- Amino acids. No further description.
- Alpha-lipoic acid (ALA) 200 mg twice daily, within 2 hours of a meal.
- Acetyl L-carnitime 500 mg twice daily, within 2 hours of a meal.
- Vitamin B6, 50-100 mg/day.
- L-glutamine, 15 grams twice daily. Find a brand with no fillers.
- Alpha-lipoic acid 300 mg twice daily for up to four weeks, then consult a dietitian or doctor.
MD Anderson is currently running a trial of oral alpha-lipoic acid versus a placebo for chemotherapy patients. Further, there is a PDF document on the MDAnderson.org website in which Dr Oh discusses diabetic PN. He suggests vitamin E, vitamin B, and L-acetyl-carnitine (same as acetyl-L-carnitine).
I didn't find much on the Mayo Clinic web site except for one reference to the use of vitamin B-12 to prevent PN. However, I know that Mayo did a study with intravenous ALA which showed marked improvement for patients with diabetic neuropathy. I just can't find that study right now.
This is a large community and I haven't done much of a search yet, even though naturopathy may be the best bet for controlling symptoms of PN. The first website I came across suggests B-12, ALA, and L-glutamine, with additional supplements if poor circulation is suspected.
International Myeloma Foundation (IMF):
I found one good video presentation from last December's Myeloma Workshop in Washington DC. Dr Paul Richardson, from Dana-Farber Cancer Institute described research on the cellular mechanisms that appear to cause neuropathy, and gave a quick list of possible complimentary treatments:
- Multi-B vitamin, folic acid, and vitamin E.
- Alpha-lipoic acid, L-carnitine, and L-glutamine.
- Magnesium and potassium.
- A daily multivitamin.
- Topical emollient creams containing cocoa butter with spearmint or menthol. He explained that the injured nerves are in a very thin layer just under the skin and these creams might be able to stimulate them.
In a recent post, Margaret's Corner, an important source of information regarding myeloma treatments, states that curcumin can help alleviate and possibly reverse peripheral neuropathy from chemotherapy.
Georgia Cancer Treatment Center:
Sunshine found this newsletter which suggests:
- Bromelain 200-400 mg three times daily
- L-glutamine 10 grams three times daily, and
- Vitamin B-complex. It also points out that bromelain is abundant in pineapple, and that it also treats other maladies such as bruising, arthritis, bunions, bursitis, tendonitis, carpal tunnel syndrome, gout, and sinusitis.
It turns out that I am already taking many of the supplements that are recommended above, though some in lower quantity than recommended. I will modify my supplement regimen so that it includes:
- A daily multivitamin.
- A good multi-B (e.g. B-100), with added B6 if necessary to get 50 to 100 mg/day but not more than 100 mg.
- Vitamin B-12 sublingual 1000 mcg daily.
- Alpha-lipoic acid 300 mg twice daily.
- Acetyl-L-carnitine 500 mg twice daily.
- Vitamin E 400 to 800 IU daily, but not more than 800.
- L-glutamine 15 to 30 grams per day. Wow.
- Curcumin 500 mg daily.
- Flax seed oil 1000 mg per day. Maybe fish oil too, but I need a reliable source.
- Bromelain, amount undetermined just now.
- A visit to my naturopath for her advice. Might do that soon anyway.
- Altering the chemo to reduce symptoms, such as three weeks on and one week off instead of the current four-weeks-on regimen. Mayo Clinic will have something to say about this of course - I'm in a trial.
- Evening primrose oil.
- Magnesium and potassium, more than I now get in food and the multivitamin.
- Topical creams with cocoa butter and spearmint or menthol.
This is a huge subject, barely touched in this blog post. If you have suggestions or information, please do comment. Sometimes the comments are much more helpful than the post itself. Thanks,