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.

  • Hi flyboy,

    Welcome to Cancer Chat. It sounds like you've done a lot of research so far on your potential options. Hopefully you have also had an opportunity to talk all this through with your doctor - or if you haven't, then try to do this in order to get as much information as possible to help inform your decision.

    You are also welcome to speak to one of our nurses if you'd like to, either by posting in the 'Ask the Nurses' section of this forum, or by calling 0808 800 4040 - Monday-Friday, 9-5.

    Otherwise, if others here have similar experience to share then hopefully you'll get some more replies to your post soon.

    Wishing you all the best,

    Cancer Chat Moderator

  • 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 .


  • 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