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Is Vidaza worth it?

Home forums Patient Message Board Is Vidaza worth it?

This topic contains 4 replies, has 5 voices, and was last updated by  Pat Lawson 3 weeks, 3 days ago.

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • #46784

    Misty Templin
    Participant

    Hello Message Board Readers. I am hoping to garner as much info on Vidaza as I can from you. Got an unexpected diagnosis yesterday of acute myeloid leukemia when I thought my hematologist and I would be discussing how bad my MDS had gotten. ha! She soft-pedaled the side effects of Vidaza after urging me to use it. Without fighting it, the life expectancy is very short. She said Vidaza would slow down the disease and maybe add 6-12 months more. But at home I researched the side effects of it and have read some of the older message board posts on it. So I’d like to ask: for those who’ve used it, how bad were the side effects? And did it really change/add to your quality of life? Would you do it again? Thank you!

    #46786

    Kathy Stermer
    Participant

    I am only on my second round of Vidaza and still waiting for results so I can’t yet speak to its effectiveness but from my experience thus far the side effects have been quite tolerable. Other than constipation and slight nausea both manageable and some skin irritations managed by a cannabis cream I make myself, so far so good. The effects on my counts have yet to be seen.

    #46787

    memily63
    Participant

    I am also only in my second round of Vidaza. I have had very minor side effects so far. A little nausea is really all and it is managed easily. I, too, won’t know the results of the treatment for a while but I’m hopeful. I’m 55 and have been dealing with MDS for just over 6 years. I wish you well with your treatment.

    #46788

    Chris Ballmer
    Participant

    i’m on my 5th round, Vidaza seems good though not much change in actual counts, i’m hoping for R W and Plate to go up of course, soon here. But no side effects to note for me…I do take zophran which give const. but i eat prunes and Milk of Magnesia and it helps in a pinch.

    #46790

    Pat Lawson
    Participant

    Misty,
    My husband is in his 7th round of Vidaza. He is also in a clinical trial and they are giving him Veneteclax which has been FDA approved for AML so they are testing to see how it does for MDS. He has had a great response. His MDS is considered in remission. He was having regular blood transfusions when he was diagnosed with high risk MDS with excess blasts back in October but he hasn’t had to have a blood transfusion since January due to the treatment. They give him Zofran for nausea just before treatment and he his biggest complaint is fatigue. We just celebrated his 65th birthday this past weekend and he was up and going until late into the night. I hope this is helpful to you. God Bless.

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