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Update
I went to daycare this morning for my Vidaza and ? transfusion. Good news is the Vidaza has started working and I didn't need a transfusion. Bad news is I have had my last Vidaza today.
My haem doc rang my nurse at daycare and said that he had spoken to my neuro doc and I was not to have any more Vidaza after todays dose. He said that I was not to panic but I needed to keep my appt with the neuro doc on Wednesday and to come and see him on Thursday.
This is very disappointing but nothing about this disease is easy and I just have to get over it and get on with life.
Regards.
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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