Thanks for that. I was starting to worry that 2 units of blood a week was very abnormal even for MDS. My last ferritin level was 2000 and I've had more than 20 units of blood since then. My doc keeps saying he's going to start Exjade but then he seems to forget about it.
I'm due to start my 5th cycle of Vidaza on Monday after missing the 4th cycle but now it seems as if the 5th cycle is going to be cancelled too.
Birgitta, I'm pleased to learn that the Thalidomide has worked so well for you. I hope it keeps working for a long time.
Bye
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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