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Old Fri May 27, 2016, 01:45 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Data - hope your faring well and the GVHD is getting better...

For what its worth... We discussed using Vidaza as a post transplant maintenance drug - I was skeptical since I didn't respond prior to transplant ... but in any event my platelets were low - and still are only around 100 - so my Dr. didn't want to do something that would lower my platelets even more.. now at 8 months he said that by the time my platelets rose high enough to consider Vidaza it'd be so long post transplant that the risk of relapse would be low in any event - so it looks like no Vidaza for me. He also thought the GVHD I had might also help prevent relapse...

Here are a couple questions you might consider asking:

1. There has been some research using Vidaza post transplant - and I think at least some transplant centers are starting to use it, at least in some cases - but I think it still is experimental -- I'd ask your doctor's their feeling about Vidaza v. Revlimid post transplant - and why they think Revlimid would be as or more effective? Is there any data yet from trials using Vidaza? Since Vidaza seems to work best with most MDS it makes more sense to me to try that drug first...

2. If they have a better test for chimerism/relapse - why don't they use it on all patients?

Did you discuss the abnormal blood morphology? Does that make your doctor more interested in trying the Revlimid?

Revlimid does seem to be well tolerated from what I have read - so you'd probably be OK trying it ... but not necessarily an easy call.

Stay strong!

Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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