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My husband tried Revlimid for maybe 6 cycles. He showed no improvement in counts, but also had no side effects. He did not have the deletion 5Q chromosome. They tried it anyway because there was nothing else available at the time. I don't know if insurance will pay for treatment without the 5Q or if they are even giving it to people without it anymore. It doesn't work for everyone with deletion 5Q. This is the trying thing about this disease. One treatment doesn't effect every patient the same way....there is no tried and true protocol for MDS. The only cure, so far, is transplant.
All the best to you, your dad, and your mother. Your dad will need your help and support through this.
Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good 
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