MDS advancing into AML

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My husband was diagnosed with MDS last August after a bone marrow biopsy. He was put on a regime of Azacitidine - 7 days of injections then 21:days off. He completed 7 cycles of this then had another biopsy. Unfortunately his condition had worsened and last week we were told it's AML.

Injections of Cytarabine along with Venetoclax tablets has been suggested. We've been given information leaflets and told to go away and discuss it and come back with a decision. We are floundering. Has anyone experienced this treatment? Does anyone have any advice as what to do next? Scary times. 

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have (AML) but I was diagnosed back in 1999 at 43 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I know this journey rather well.

    Let’s look for the group members to pick up on your post. You can use the site Search Tool Mag near the top to search for posts about Cytarabine and Venetoclax. Just put the words in and select Anywhere and as always you can hit reply and see if the members are still looking in.

    It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

    You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with AML in it so worth checking.

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Unfortunately my husband had acute aml and was on same treatment which unfortunately didnt help  He was diagnosed in March had that treatmrnt after first treatment didnt put him in remission.

    He has a very rare mutation of aml and ended up having a stem cell treatment doner was brother. Everybody is different it did clear the blasts in blood but not in bone marrow .Its worth trying as aml is something you can wait around with .Best of luck its a tough treatment but stay positive.

  • I meant aml is not something you can wait around with .

  • Thank you for the info and links. The more I can read, the more prepared I hope I will be for whatever comes next. 

  • I have AML and have had treatment with Cytaribine and Venetoclax which luckily I tolerated very well.I was given the choice to have my Cytaribine  shots at home which really freed me up to get on with my life. I wish your Husband well, and hope if you do decide to take the Cytaribine venetoclax route, you have the same outcome as I have had.Im still having treatment and had Intensive Cytaribine and venetoclax treatment in hospital recently, and although its harder it is tolerable, Best Wishes