[maggiemag]

Hi Cheryl,

Sorry you have to deal with this; Shingles is bad enough, I hear. Incidentally, my heme/onc will not let me get the shingles vaccine b/c I have MDS. Any of you ever get the vaccine after diagnosis?

As for the peripheral neuropathy, I got it from Revlimid. I started having trouble walking, like I was drunk sometimes, and had a couple of minor falls. I knew it wasn't in my head, so I saw my neuro who agreed I had PN. He did an obscure lab test for POEMS syndrome as I have some of the features, including MGUS, but decided it was from the Rev. Luckily, I do not have the pain angle, but numbness of the toes which is why my balance was off. Since the drug was dc'd, it has improved a little, but will never go completely away, according to the internist and heme/onc. My toes/feet sometimes feel "wooden" or like sticks, it's hard to describe. I'm not diabetic either, btw.

I just remembered that there was a discussion at the Chicago MDS conference on PN last fall, and the physician said there was a cream being studied for PN as a result from chemo, and that it was promising at relieving some of the pain. He said it would make my numbness worse though, so I never wrote down the name of the drug, sorry. Maybe that session was recorded, Cheryl.

Good luck!
Mags