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anyone there have my experiences with dacogen

Home forums Patient Message Board anyone there have my experiences with dacogen

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  • #29224
    frank
    Participant

    Hi there;

    I had MDS(RCRS) for a long time, survive from transfusion for 12 years. I will be 53 this year.

    I have done vidaza treatment 2 years ago, failed with terrible infection, last half year. and Stop the treatment.

    recently, discussed with John hopkins, I start dacongen from Jan, 11th, 2016, 5 days, last dose is Jan 15th, 2016. I was admitted in hospital from 01/22/2016, because my white count dropped almost 0. From then until today, 17 days, it seems my bone marrow refuse working(with granix shut everyday). I did BMB on Oct, 2015, which is no progress for my disease(RCRS). I already experienced 2 infections in hospital, like mouth sour or some other caused, because my ANC is 0.

    I am a pretty healthy person, still try to walk 6 miles inside hospital, but if this continue, who knows what will be next.

    I want to ask if anybody experience this longer time to recover from the dacogen, or never recovered. I knew BMT is not option for me now, unless my response to dacogen.

    thanks every one.

    #29225
    frank
    Participant

    it is RARS, not RCRS.

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