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Choices with AML

Evieart
Evieart CSN Member Posts: 1 Member
in Leukemia #1

I was diagnosed in 12/23 with AML I am 102 days out from my stem cell transplant at UVA. I am about to go on maintenance chemo for 1 to 2 years to help avoid a relapse. Wondering if there is anyone that has been down this road and would love to hear how they are doing with it. My schedule will be every 8 weeks 5 days of low dose intravenous chemo along with 14 days of chemo pills. I am finding it hard to find others with my same leukemia and realizing that this cancer presents itself unique in each person that has it. I so would love to find someone to talk to that has been or is going through AML.
Thank you for your time and may Goddess bless and heal you beyond your wildest dreams.

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  • ezstyle2025
    ezstyle2025 CSN Member Posts: 2 Member
    #2

    leukemia AML ON 06/15/2022. I GOT MY STEM CELL TRANSPLANT AT UVA ON 02/23/2023. AFTER 2 YEAR I'M FEELING GREAT WITH ONLY ONE THING I LOOSE ME ENERGY SO FAST BUT THE LAST 2 YEARS ITS HAS BEEN VERY HARD. NOT MORE MEDICATION.

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  • Olesmoke
    Olesmoke CSN Member Posts: 2 *
    #3

    I have leukemia, had a stem cell trans plant 2/1/23, the 5 weeks in the hospital was pretty rough, I lost 30 lbs. I'm still on low dose chemo, did 7 days a week chemo in the beginning, still taking 16 pills per day, also low on energy. Was on nuclear submarines and having a hard time getting some help from VA, have been denied twice

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  • ezstyle2025
    ezstyle2025 CSN Member Posts: 2 Member
    #4
    https://csn.cancer.org/discussion/328341/choices-with-aml

    Im out the for 2 years. Feeling weak, my Trasplant was at UVA

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  • nana_marti
    nana_marti CSN Member Posts: 4 Member
    #5

    My AML was diagnosed in august 2023. Went in remission from chemo only. Have been on maintenance IV azacitidine for 7 days and venetoclax for 14 days. I do this every 3 months. I don’t have an end date at this point. Is this similar to your treatment?

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  • Anton01
    Anton01 CSN Member Posts: 2 *
    #6

    My wife was diagnosed December 2023 with AML and have been treated with the standard azacitidine/venetoclax chemo which worked for around 18 months, then unfortunately she relapsed and her condition worsened gravely. However she had the IDH1 gene mutation and was switched to ivosidenib/tibsovo which works really great for that particular type of AML and is now back in remission. I was not able to find any statistics how long before she might develop resistance to that new drug. If anyone is using Tibsovo, please let me know your experience.

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