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Old Tue Jan 31, 2017, 11:01 PM
Care. Care. is offline
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Join Date: Dec 2016
Location: Santa Fe
Posts: 6
Hello CatL,

I think you have some very valid concerns. I cannot speak to the accuracy of your Dad's diagnosis, but getting Vidaza when blood counts are already this low might cause concern if your Dad has a heart condition or other conditions that would become more complicated by additional reduction in HGB or Platelets. For my Dad, who also was RAEB-2, the first cycles of Vidaza had more of an effect on white cells, and the effects to the red cells and platelets were temporary, for 2-3 days, before they came back up. And at first, when they did come back up, they came up rapidly.

I think the key is to stay strong enough to complete all of the Vidaza treatments each cycle, and continue with Vidaza. I think Canada has some of the most interesting studies, especially for as sick as your Dad is, that show sticking with Vedas for as long as he can tolerate it, without taking a break, is the Canadian best practice--and I wish we would have known that with my Dad.

Learning what, if any, chromosomal changes were found in your Dad's BMB will give you insight as to how well your Dad might respond to the Vidaza.

RAEB-2 is pretty serious, and I'm sure you're nervous, upset and anxious, but hang in there! My Dad had chromosomal changes that all worked against him, but he still responded very well after the first 4 cycles of Vidaza. And in his case, I think the outcome would have been better if he would have continued with more cycles before going off Vidaza the first time.

All the best to you and your family.

Care.
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Daughter of Jim, dx 11/15 MDS RAEB-1 low-risk (5% blasts). Vidaza started 12/15. BMB 4/16 5% blasts. BMB 9/16 RAEB-2 9% blasts, hi-risk. x-fusion dependent.
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