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Mds
Hey Bergitta,
I am 59 now. I have hypothyroidism that started out hyper. I received a 1 time radiation treatment for the hyper that turned it into hypo. That was 16 years ago. They think my mds came from that. I don't really have any other big time issues health wise. I have had a pacemaker for 7 years now but no other heart problems. When I was first diagnosed with MDS they found 3 donors within 2 months....one was a perfect match. But we could not get the blast count down enough. I don't understand the transplant thing. Some folks get transplants and they seem to still have circulating blast. And some get the mini transplant and again I don't think they are in complete remission. My Dr at Duke has said he might have something coming up in a couple of months that I may be able to participate in but I don't have any details yet. And he said several months ago that when it turns into AML they have lots of studies for that. But I know that MDS to AML is not very good. I just have a hard time deciphering everything on the internet. I know that MDS is so different in everyone and so unpredictable. Thanks for listening!
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DX jan 2013 RAEBII blast 15%. All 3 cell lines affected and critically low. Dacogen and revlimid no luck. Cytarabine and idamycine 2rounds. Remission achieved but lasted less than 3weeks. Blast back to 15%. Vidaza started Oct 2013. 6 rounds so far. No change in blood counts all still low. 59 yo.
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