Sunday, May 17, 2009

Peripheral Neuropathy Treatment

It's here, perhaps. Maybe. I hope not. In the past few days I have felt a tingling sensation in the very tips of both thumbs, becoming much stronger when I touch the skin there. Nothing in the fingers yet. But in bed last night I noticed a numbness in the sole of my left foot; not so much the toes as the ball of the foot and nothing in the right foot yet.

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.
I have another Mayo appointment in two weeks, when this subject will get some genuine medical attention. Furthermore, by that time, I will have a better idea whether or not I really do have PN.

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, 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.
The same page gives advice for cramping, and also has a list of prescription drugs. I get the impression from members of our support group that the best of those drugs come with their own list of significant side effects. On the website itself there is another Q & A page listing non-prescription alternative & nutritional self-treatment for PN. Summary:
  • 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.
  • Acupuncture.
MD Anderson Cancer Center:

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 website in which Dr Oh discusses diabetic PN. He suggests vitamin E, vitamin B, and L-acetyl-carnitine (same as acetyl-L-carnitine).

Mayo Clinic:

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.

Naturopathic Community:

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.
Margaret's Corner:

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.
A Regimen:

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.
If that doesn't solve the problem, then I'll consider:
  • 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.
  • Acupuncture.
  • 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.
Your Turn:

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,



  1. Don -

    I am in treatment for MM at Arkansas under Bart Barlogie and am heading in for my second transplant this week.

    One of their doctors prescribes something called MetaNX, which is a pill containing a bunch of B vitamins that has been very successful in reducing the incidence and impact of neuropathy among older diabetics. You might check it out.

    Had not heard the Dex has anything to do with PN. Based on what I know about Revlimid, to say nothing of CC-4047 (Pomalidomide?), PN shouldn't be a major factor from that, either. The primary culprits appear to me, from my research at least, Thalidomide and Velcade (which you haven't yet encountered, sounds like).

    Here's hoping you don't really have it!!! All the best to you in controlling your disease -- and if you ever decide to go the stem cell transplant route, I can tell you from personal experience, it' no big deal. :)

    Best wishes,


  2. Thanks, Nick,
    Looks like MetaNX is a pill with B6, Folic Acid, and B12, available only by prescription. The manufacturer claims that the vitamins are in the most-bioavailable form.
    Be well, Don

  3. Don,
    An excellent posting on peripheral neuropathy, well done.
    I feel PN is under estimated by myeloma patients and our medical advisors. There should be more done to highlight the issue and research undertaken to find a solution not just how to control it.
    To find you cannot continue a myeloma treatment because of PN is devastating.
    A very informative blog, I read all your postings. Good health.

  4. Hello. We do 600 mg 2x daily of ALA up to 2400 mg/day along with the B vits (Folic Acid, B6 & B12 shots) and it works within an hour to help combat the PN symptoms. I know its different for everyone, but in looking over all the remedies I thought the dosing was kind of small.

    We've had no trouble with it effecting the oral chemo regimen, but during the hardcore chemo treatments, we switch to the neurontin just to be on the safe side and not interfering with the chemo.


    Lori Puente

  5. Don,

    Could I pull part of this post off your blog and place it on the front of the website and link the remaining article back to your blog? If your cool with it please message me back at



  6. My mom was diagnosed w/MM in January 2010. In February, she began receiving treatment for it, using Velcade. She's on a three weeks on, one week off basis. Two months ago, she began complaining of burning and tingling in her legs and back pain, and being unable to sleep b/c of the burning pain. Well, to combat the back pain, her oncologist ordered 10 visits for radiation. The back pain has subsided significantly, now she's suffering from what we think is neuropathy. Argh. Can't win here. The oncologist mentioned this before he ordered the radiation but asked to wait until the radiation to make sure it wasn't neuropathy. Now, after doing my research, I feel he should have attacked the symptoms of neuropathy early on, but he did not. I'm afraid she may have done damage to herself since she first complained about the pain. She went to the doctor's today to discuss her neuropathy, as, just yesterday, when I took her to get her fluids/hydration, she could barely walk after about 30 steps. It's like she's becoming disabled and can't walk anymore.

    I'll keep watching your post to see if you say anything more about your condition.

    Bravo to you for staying active!

  7. The treatment method for neuralgia will greatly be dependent on the type of neuralgia felt, neuropathy in feet and diabetic neuropathy had some similarities but would greatly differ on the long run.

  8. I don't know if you could take it or not but you can ask your doctor. I have MGUS not MM. I take Cymbalta and it dials down the pain from neuropathy.

  9. Thanks Carol,
    My neuropathy has stabilized and is not really much of a problem. The supplements are enough.

  10. In addition to vitamins, I would like to suggest Realief Neuropathy Center to people. My mom has had chemo-induced neuropathy in her feet and toes for 5 years now, and she recently started receiving laser therapy at Realief Neuropathy Center. On her very first treatment, she said she could feel the numbness temporarily go away in her left big toe. She described it as a flood gate of feeling being opened to her feet. This was incredible for her. She is continuing treatment this week, and we hope to see continued improvement. I would highly recommend this to others suffering from neuropathy. It's a non-invasive, drug-free treatment. It is considered an "alternative" health treatment, so it's probably not something your doctor will suggest to you, but who cares? You've got nothing to lose by checking it out.