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Hi,
Today is my last day of the first cycle. Yesterday my Hb was 120!!! It hasn't been that high in 6 years. It looks as if the Vidaza may be working already. Whites and platelets still low and oddly enough my blood pressure has fallen and was 72/48 yesterday so the nurse gave me a lot of saline as well.
Hopeful, yes, I have been tested for PNH a number of times and it has always been normal. In the first few years I felt that I had every test under the sun a lot of them came back abnormal but still didn't point to a diagnosis. I was happy (truly) when the BMB finally showed the MDS because not only was there a cause for my blood problems but it opened the door to some treatment options.
Well, I'm off to daycare and I can't wait to have the needle taken out of my port and feel free again.
Keep well.
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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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