MDS/AML TREATMENT OPTIONS

Have just been diagnosed border line AML after MDS for 3 years, I have been offered 3 choices . 1. No treatment apart from transfusions , 2. Azacitidine , and  3. Azacitidine/Venetoclax .  I have read most of the medical info I can find , but I would like to hear real peoples experiences on these drug regimes as I have no idea which way to go.

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  • Hi I'm newly diagnosed with the same thing . I'm on week 3 of aza thingy bob . Seems okay so far and I'm led to believe best way forward . After this if it's working then it's another chemo drug (consolidation ? ) not sure what it's called cartadine or something similar . Ha ha my brain is marmalised . Consultant said there's lots of different drugs and combinations for mds with aml so I'm hopeful . Yes venetoclax rings a bell but that's further down the line if need be . I've already had the injections growth factors to boost bone marrow . Oh my gosh it's a bit of a nightmare isn't it ?

  • Thanks for getting back to me ,its been a help as I'm starting Azacitidine / Venetoclax next week , and all the medical descriptions sound like horror stories . Best wishes on your treatment .

    flyboy

  • Hi there am glad I saw your post ..all the best . I took the anti sickness and hour before the aza and have not had any just a little bit nauseous at times . Ginger biscuits sort that out I find . I love choccie hob nobs but ginger works better ha ha . There's so many treatments now it's encouraging if one or two don't work so well . 

    Take care 

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