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ASXL1 and Vidaza + Decogen

Home forums Patient Message Board ASXL1 and Vidaza + Decogen

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This topic contains 1 reply, has 2 voices, and was last updated by  Donna 2 months, 2 weeks ago.

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  • #44122

    Amy Clark
    Participant

    Hi! Thank you to all of you who participate in these forums. You have been a wealth of information as my newly dx husband of 52 and I navigate this new world of MDS and MF.

    My question today is about the effectiveness of Vidaza and Decogen when you have the ASXL1 mutation. Does anyone have experience with this, either positive or negative? From searching the internet I cannot find articles that say Vidaza and Decogen work with this mutation. Thoughts?

    For the record he has 6% blasts, Hgb. 8.5,the ASXL1 mutation, lots of bone pain, is transfusion dependents and is so fatigued he cannot work. We are at a Center of Excellence.

    God bless you, Amy

    #44123

    Donna
    Participant

    Hi Amy,
    I am watch and wait, get blood work every three months, called pre-MDS on bone marrow biopsy. However, I have 4 mutations that seem to matter: ASKL1, SRSF2, RUNX1 and TET2. My platelets, WBC, RBC and hemoglobin are all going down…WBC around 1.6, hemoglobin 10.8, RBC I forget and platelets 63,000. My MD tells me that when my platelets get to 50,000 I will have to start treatment and he said it would be either Dacogen or Vicaza, but most likely Dacogen. All I get for symptoms are bruises, tired/weak feeling and back pain. I guess I’m only telling you this because I imagine the Dacogen must be effective with ASXL1. My doctor did say that he has to tell me that it doesn’t work for everyone but he didn’t say why. Hmmmm. I hope your husband does well. It’s kind of like a cloud that follows you around and you don’t know what is going to happen next.
    Donna

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