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Old Fri Apr 17, 2015, 01:28 AM
JordanN JordanN is offline
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Join Date: Nov 2014
Location: California
Posts: 59
Hi, Cynthia!

Welcome to the forums! I'm so sorry your mother is dealing with bone marrow failure and just wanted you to know that I understand how scary and frustrating it is trying to help your parent and yourself manage this disease! You are doing a great job!

I am not nearly as knowledgeable as many others on this forum (DanL explained things so well!), but I can at least tell you what my 80 year-old father's experience has been in reference to some of your questions.

I do think you really need that second opinion because you can't effectively treat these diseases without knowing exactly what type of bone marrow failure you have. In my dad's case, he has MDS RAEB-2 (18% blasts as of 10/14) with deletion of chromosome 7 and initial labs of WBC = 1, Hgb = 8, and platelets = 50. With these findings, Vidaza was the recommended treatment. It was made clear to us that Vidaza for him would NOT be a cure and was an attempt to slow the progression of the disease and improve his quality of life with better blood values.

For my dad, the Vidaza was unsuccessful as it did not reduce his blast count or improve his blood values, but he was continued on it because it did seem to keep the blast count from getting worse for awhile (he is having another BMB in a couple of weeks because it looks like things are changing for the worse now after a year of treatment). In reference to your question, Vidaza does lower your blood counts, but even in my non-responder dad his counts would recover a bit between cycles. If they were too low, he got transfusions and his next round of Vidaza would be postponed until the values started to rise again. People who respond well to Vidaza seem to have their counts recover well between cycles.

It seems that these diseases act a bit differently for everyone, and all you can do is educate yourself, find a doctor you can trust, and try what you think is best. My dad's course hasn't been as successful as we had hoped, but on the other hand it hasn't been as horrible as it was initially predicted to be.

I wish you and your mom all the best and will be keeping you in my thoughts and prayers!
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