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Old Sun Dec 21, 2014, 10:01 AM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Lurk - there are a number of factors that go into determining the risk level including chromosomal anomalies, blasts in the marrow, peripheral blood counts etc. The MDS diagnosis would have been based on the bone marrow biopsy findings - it sounds like the hematologist is planning a follow up visit in six months - at that time he may do blood work and if things are stable send you on your way to watch and wait - or he may also do another BMB. It doesn't sound like s/he has a particular sense of urgency, which suggests a good prognosis as you previously stated - but you may want to have him explain things in better detail at your next visit. There a couple of good websites you may want to visit - the MDS Foundation - http://www.mds-foundation.org - this has a lot of information - it also identifies hospital facilities (Centers of Excellence) that have some expertise in MDS - another is the MDS Beacon http://www.mdsbeacon.com
- which also was a good source of information - but they have unfortunately stopped publishing. That said - don't overwhelm yourself or over react to information you find on the internet - you sound positive and that is a good place to be. I think in some ways its harder to be the caregiver than the patient - best wishes to you both.
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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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