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This topic contains 1 reply, has 2 voices, and was last updated by  Terri Erdman 1 week, 3 days ago.

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    I will be starting Dacogen soon and would like to hear about others experience with this treatment. I am curious if I will be able to work and function close to my normal.


    Terri Erdman

    Hi Donna,
    My husband is 58 and diagnosed with high grade MDS with extra blast and TP53 mutations on January 10. He was very active and in great shaped. He had 2 courses of decitabine. He continued to exercise and function normally during treatment. We even took our RV from WI to Louisiana between treatments!! He tolerated this drug quite well. No side effect, kept his hair and blasts dropped from 9% to less than 1%.

    He received HSCT from our son on April 24th. He has had significant GI effects from conditioning, transplant and anti GVHD drugs. However, those seem to have calmed down. He is at Day +19 and hoping to go home within the next couple of days.

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