[ulli kopylec]

My Husband had was diagnosed with MDS in March 2018 . Had 6 cycles of chemo with Trial medication. Blast went from 9 % to 0 % and in Oct 2018 had a Stem cell transplant ( from his brother ) He is now past 100 days. Everything went well, but he is still very tired. We are hoping it will get better. We went for the transplant because alternative was injections in his Stomach for 7 days out of every months. He did not want to live like that. So far so good.

[ulli kopylec]

Thanks for your input. Next Friday he will be seeing Dr Lohith Gowda at Yale Smilow in New Haven Ct. Maybe we will find out in what risk group he is in.

[ulli kopylec]

I am so happy to read this. My husband got his diagnosis one week ago. MDS EB1 . I am very new to this , I think it’s also called RAEB . I am trying to read about this all I can. And it get’s me very scared . My Husband is only 62 years old and I don’t want to loose him. His Doctor is talking about putting him on Vidaza . He is also talking about a clinical trial ( Glasdegib ).Not sure if we should go for that. Any feedback ? I am so scared of what the future will bring for us. That’s why your story brings hope.

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