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ASXL1 & IDH1 Mutations

Home forums Patient Message Board ASXL1 & IDH1 Mutations

This topic contains 3 replies, has 2 voices, and was last updated by  Michael 2 weeks, 6 days ago.

Viewing 4 posts - 1 through 4 (of 4 total)
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  • #48748

    Cammie Vogel
    Participant

    Hello,

    My dad was diagnosed with low grade MDS a few months ago. Wondering if anyone out there has the ASXL1 and IDH1 mutations, he has both.

    Hoping to find someone in the same boat to compare apples to apples and connect him with someone.

    Thanks

    #48755

    Michael
    Participant

    Bingo, you found me. I have both mutations plus SRSF2. I am low grade, low risk classification. I was diagnosed in June 2016 and have been on watch and wait since then. Sole cytopenia is neutropenia with very low ANC, always below 500. Hgb is generally around 11.5 to 12 and platelets above 200. I have had skin infections and so far so good. I’m scheduled for Next BMB in November. I do get monthly monitoring for blood work. I am 67 yr old Caucasian male.

    Best wishes to you and your dad.

    #48758

    Cammie Vogel
    Participant

    Thanks so much for your reply, Michael. Unfortunately, my dad is very anemic with his hemoglobin dropping into the 7’s, he’s had 4 blood transfusions since May 11th. He needed another one 7 1/2 weeks later and now it’s been about every 3 1/2 weeks. He’s been on Tibsovo for the IDH1 since July 4th but it hasn’t seemed to really kick in yet, but the Dr said it’ll take 3 months to know if it’s working. His platelets are 121 and now his WBC is low at 2.0, as of the past two weeks.

    He’d really like to connect with you offline, would you be willing to speak to him? Not sure how to get your contact info privately…

    #48783

    Michael
    Participant

    Cammie ~

    I don’t consider myself much of a resource for your dad. While I have the two mutations the course of the disease for your dad is much different than mine. The only significant comments made to me regarding the mutations is that there are drugs other than chemo associated with the IDH mutation. Since I am still not receiving treatment I have no other frame of reference regarding the the interactions/ effects of those drugs.

    Best wishes to you and your dad.

Viewing 4 posts - 1 through 4 (of 4 total)

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