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Old Thu Mar 8, 2012, 08:45 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey PFMD!

We just had a big discussion about pain during BMBs here. Some folks ask for sedation -- or even general anesthesia. Like Hopeful, I'm one of those folks who don't find them all that bad, but I know lots of folks who find them excruciating.

While the MDS drugs aren't chemo -- they won't generally make your hair fall out -- they are very strong drugs, with real side effects. Unfortunately, the three main ones, Vidaza, Dacogen, and Revlimid, do all suppress counts at first. They make you sicker before they make you better. Plenty of folks can't tolerate one or the other of them.

Some folks can tolerate very low platelets, like your Dad seems to be doing, without having bleeding problems.

I wouldn't panic yet. Lots of folks live with lower-risk MDS for years and years. You'll know more when you get his BMB results.

If he does have MDS, before you start treatment, I think most of us on this forum would strongly encourage you to seek a consultation with an MDS expert, perhaps at one of the university or teaching hospitals. Local hematologists, even the best ones, don't actually see a lot of MDS cases, so it's a really good idea to get someone who has treated a lot of MDS to look at his case -- before treatment starts.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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