My wife was diagnosed with AML and a mutated IDH1 gene (December, 2023). Treated with azacitidine and Venetoclax starting January 2024, which helped for 18 months, then she relapsed. Her condition worsened really bad, but after couple of months was prescribed Tibsovo (2x250mg), which works great for now. My questions to the forum if anyone has the same condition and treatment: how long have you used this drug with or w/o side effects, and if you had to reduce the dose due to side effects did it still work? Our oncologist says she may develop resistance to the drug eventually. Thank you.
Hello Anto
I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the acute myeloid leukaemia group.
You may be able to get an answer to your question by posting in the "ask a nurse" section and here's the link you need:
I do hope you get an answer to your question.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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