You can’t see behind the scenes into my email in-box, but if you could you would find the same backlash defending alpha lipoic acid (ALA) that you can read in several comments following yesterday’s post. L-glutamine is also used to help minimize peripheral neuropathy symptoms. It appears on my list, too. Both of these powerful amino acids hold properties that could harm our ability to fight multiple myeloma.
I had planned to cover the how and why specifics about ALA in tomorrow’s Food and supplements that myeloma patients should avoid (Part Four) column. But let’s focus on ALA–and revisit L-glutamine–today.
Danny Parker has made my job easier, answering questions from several commenting readers yesterday:
Yes, Dr. Berenson and a number of others recommend ALA for peripheral neuropathy and it does appear effective. However, this paper given by Eric Sanchez at the 2009 ASH meeting gives one pause– at least if you are on Velcade. Not only does it help with PN, but it appears to somewhat inhibit Velcade action. See a summary of Dr. Sanchez’s work on page 16:
While I’m at it, Pat neglected to include Hyaluronic acid (the youthful skin supplement) on the list of NO-NOs. Here’s the strong evidence to stay away.
Everyone has something not to like in the list of bad guys. Acryalmide is my personal dis-favorite as it is coffee (which I love), but french fries and potato chips which taste good, but are lousy foods.
On too much alcohol, that would be more than two glasses of wine a day or something like that. Personally, I think it does NOT even belong on that list (raises red flags) as the evidence clearly tilts the other way: alcohol (in moderation) may be helpful to myeloma patients.
Let me make things easier for you; I’ll reproduce the IMF’s summary of the research presented by Eric Sanchez here:
Alpha Lipoic Acid and Bortezomib
Alpha Lipoic Acid (ALA) Inhibits the Anti-Myeloma
Effects of Bortezomib (Abstract 3832)
Presented by Eric Sanchez, Institute for Myeloma and Bone Cancer Research, West Hollywood, California. Alpha lipoic acid(ALA), an anti-oxidant supplement that is used in the management of peripheral neuropathy (PN) in myeloma, has been shown to inhibit the anti-myeloma effects of bortezomib in myeloma cell lines (cells capable of growing in the laboratory outside the body).
This is being investigated further in myeloma cells taken from patients and in an animal model. In addition, possible ways to overcome the inhibitoryeffects of alpha lipoic acid on bortezomib while preserving the beneficial effects of the supplement in PN are being looked at.
Notice who presented the warning? A researcher at Dr. Berenson’s own clinic! Velcade is notoriously sensitive (in both good and bad ways) to what patients ingest while being treated with it. But this report does make me wonder if ALA has any negative impact on IMiDs like Thalomid, Revlimid or Pomalyst as well? For that reason, ALA did make my list.
As I commented in response to Matt and Charles questions:
Sorry that I haven’t gotten to alpha lipoic acid yet. But I love the conversation it has started! I have also received emails about it. Plan to run a pros and cons friday…
But how about the benefits? Listen to this testimonial from a Minnesota support group leader named Joyce:
No I’m not crying or complaining…just stating a fact. At a point in time when I didn’t think I would ever be able to walk again…my feet felt like I was walking on broken glass, even when I was lying down. I started the L Glutamine regime (recommended at that time by Dana Faber nurses per their patients), nothing happened for 7 days when the pain in my feet miraculously disappeared. I have since tried to go off of it, only to have the pain in my feet return. I do know that I have for some unknown reason been able to be on CyborD treatment for coming up on 4 years, my doctor told me I was one in a million; for sure out of hundreds that have not had to stop taking CyborD cause of neuropathy or other side effects. I thank GOD every day that he and I prove the statistics wrong…
Thanks for sharing, Joyce! Anecdotal evidence that L-glutamine can help PN, while not blocking the beneficial effects of Velcade.
My peripheral neuropathy (PN) is bad. Made worse by taking Revlimid for five years, despite the fact officials at Celgene–and a number of myeloma specialists–continue to argue that Revlimid does not cause PN. It may not “cause it,” but it definitely made mine worse–and I wasn’t using Velcade at the time. I used to take both L-glutamine and ALA. Now I’ve dropped them both. I didn’t notice much difference. Increasing my dose of neurontin (Gabapentin), as well as spreading dosing throughout the day–on the advice of my good friend and Purdue researcher Gary Blau–has helped keep my PN under control.
My opinion? If taking either one of these supplements–or both–helps minimize PN side effects for you, keep taking it! But I would drop ALA if using Velcade; at the very least the day before, during and after treatment.
Tomorrow I’ll get the the remaining no-no’s on my list. Feel good and keep smiling! Pat