I had taken some Alpha Lipoic Acid for a while, rather sporadically and without too much conviction, during the time I was on thalidomide. This is a pill (though it can also be given intravenously) that is used with diabetic to combat neuropathy, and it's also been recommended by some Myeloma centers (for example, Dana Farber had it in their regimen, at least in 2006, as can be seen here.
However, a more recent paper presented at ASH in 2009 is titled Alpha Lipoic Acid (ALA) Inhibits the Anti-Myeloma Effects of Bortezomib. That's pretty dry, as far as light reading goes. However, anything that makes Velcade (Bortezomib) not work as well is off limits.
As I type this, there's no pain or numbness. It feels like my shins are asleep, if that makes sense to anybody. Except I wouldn't say the tingling is significant...it's barely there. Yet still, enough to notice.
One reader was kind enough to mention B vitamins. I do take, on my Revlimid nights, something called Folast. This was supposed to be a generic form of MetaNX -- a complex of folic acid, B6 and B12 -- which is used to combat diabetic neuropathy. I read here, however, that Folast has an inactive form of one of the B vitamins, which makes it not as effective. MetaNX uses the active form of these vitamins. So I better fight for the non-generic!
This post is a little link-happy but this information is specific enough where I wanted people that might be interest to be able to read the same source materials that I'm reading.
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Are you also taking Protonix or something like it? Protonix is known to block your body's absorbtion of B vitamins. It is quite a dilemna since you need both. Something else to discuss with your medical team. Note: I was able to wean myself off of Protonix successfully. However I once tried dropping it cold turkey...which I can say unequivicably is a bad idea.
ReplyDeleteGadzooks -- I do take Protonix one to two days a week (dex day and usually the day thereafter). I'm not on it daily, though.
ReplyDeleteThat's good to know.
One pill makes you larger...another makes you small...
Can, or will, your medical team allow you to take homeopathic B vitamins instead of the chemically created ones? Just a thought...
ReplyDeleteWow.. This really gets complex... I hope I can get up to speed when I need it. I have PN and I take Gabapentin 300 MG - Twice a day. It really seems to work well. I have very little problems now. I also take a B complex every day.
ReplyDeleteYou probably saw this, but just in case, The LA Times health section wrote about Omega-3s today and provided some good info on ALA. Link: http://www.latimes.com/features/health/la-he-omega-3s-20100426,0,4578236.story
ReplyDeleteAlso, I remember reading that there is a USC study that indicates that Green Tea...while a great anti-oxidant for the rest of the world...is suspected of messing up the mechanism that Velcade uses to blow up cancer cells. So...wine yes; green tea no.
Nick
ReplyDeleteInstead of Protonix, see if yogurt or kefir would help (coats the esophagus well). Also, B Monster by Odwalla, a drink found in the produce section worked wonders for me--no more PN.
For the record... and this is a new turn of events for us... I too am concerned about impeding the benefits of any of the chemo infusions and had reached a compromise of sorts with our first LR doc to not do any of them during our chemo. I also read about a 12 hour window on either side and so on Dave's "Velcade Days" he abstains from everything except what has been specifically prescribed by the docs. Because he has great benefit from the B's and the ALA for PN, he resumes them as needed, but never on infusion days. I have spoken with two docs outside LR and they have validated this solution as being "very smart" and not something that ever occurred to them to suggest to patients who like to dabble. :) Hope that is helpful.
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