I have been exchanging e-mails with a fellow multiple myeloma patient, Jim, about the symptoms of neuropathy and how to improve them. Here is one of his recent e-mails with real world advice for those of us who suffer from–or are trying to prevent PN:
Thanks for getting back to me. I am sure you probably know that once a
week dosing of Velcade appears to reduce PN as opposed to twice weekly.
Also Dr. Ken Anderson said that if you add a heat shock 90 inhibitor
you can decrease neuropathy and enhance the efficacy of Velcade.
(Managing Myeloma: An Experts Update October 29, 2009) Dr. Anderson
also mentioned Medrol as something that has made tolerability better in
some people. I asked Dr. Siegel at Hackensack who was the pro stem
cell MM consult about heat shock inhibitors reducing PN and he said
that the heat shock inhibitors were disappointing. Still, something
that would be worth asking about if you start Velcade.
I must admit I am not familiar with Medrol. I will research that and get back to you tomorrow.
For now, here are the recommendations for over-the-counter supplements from my new myeloma doc, Melissa Alsina from Moffitt Cancer Center in Tampa:
With food, take a multi-B complex (B6 dose should not exceed 100mg), folic acid 1 mg/d, vitamin E up to 400 IU, acetyl L-carnitine 500 mg twice a day, alpha-lipoic acid 500 mg and a topical application of cocoa butter, applied twice daily to extremities with gentle massage.
Again, I’m not familiar with acetyl L-carnitine. Sounds like there is more I can do than my daily gabapentin, vitamin E, alpha-lipoic acid, magnesium and super B complex. Worth a try–and isn’t that the key–experiment to see what works best for you.
Feel good, keep smiling and keep trying different supplement combo’s to help improve your PN! Pat