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Old Thu Jun 7, 2018, 10:29 PM
maggiemag maggiemag is offline
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Join Date: Sep 2012
Location: Cincinnati, OH - United States
Posts: 92
Hello MDSmom,

Well, only your doctor can really give you answers; I'm a patient myself. But it seems to me that her blasts being down to 2% is a very good response. Counts can go down quite a bit in the beginning of treatment, but improvement in her counts plus the blast % would be the main ways to judge response. Her platelets have improved; I think there's quite a difference from 8K to 32K. Sometimes cytogenetics in the bone marrow can improve which would also signal a response.

I think I've read that you must give Dacogen or Vidaza at least 6 cycles to see if it's helpful. I have also read that the drug needs to be continued indefinitely until it stops working, which could be years. Counts crashing and staying down, peripheral blasts, increase in bone marrow blasts would all point to the drug stopping working. I don't think Dacogen can be given every 2 or 3 months, especially in someone who hasn't been on it very long. Maybe there are exceptions in long term Dacogen patients.

Hope this helps some, and please keep us posted.
Margaret
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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