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Hi,
I got my BMB results today. The doc was hoping my last increased blast count was due to a recovering bone marrow post Vidaza. That's why he cancelled my 4th cycle and redid my BMB before the 5th cycle was due. Unfortunately the blast count was still increased and in fact was slightly higher than the one a month ago.
He asked me if I wanted to continue the Vidaza and I decided to try again. So I start the delayed 4th cycle on Monday. I decided to do this for a few reasons. The first was I couldn't see the point of giving up on the Vidaza so soon when all the research shows it can take many cycles to work. 2nd... my blood transfusion requirements had doubled since delaying the 4th cycle..3rd... No donor has been found for me in 7 months, the Vidaza might delay disease progression long enough to find a donor.
My doc is so cute, he put his arm around me and patted me on the back today, it made me feel very safe.
Take care.
Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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