AML relapse - venetoclax / Azacitidine

I just found out I have relapsed after 4 years (post SCT). I am struggling with major anxiety as I have a little boy (I was pregnant when I was diagnosed) and I was so hopeful I would get the chance to see him grow up. 

I guess I am looking for any positive stories about reaching remission in this scenario using Venotoclax. It’s new since my SCT. 

Thanks Pray 

Faith 

  • Hi Faith  and I am so sorry to hear that you have relapsed following your SCT. I don’t have AML but did have Allo SCT for my rare type of NHL.

    I relapsed 6 months after my Allo SCT but as there were no further treatments available we went for a second Allo SCT 10 months later using a different and very aggressive conditioning. That was Oct 2015 with remission achieved in Sep 2016.

    Lets look for these new drugs to do the job for you and let’s look for any members who have had these drugs to pick up on your post.

    Since my second Allo SCT there are a few new drugs come along for my rare type of NHL so I now have a fallback - it’s amazing the developments that are doing done in treatments.

    To widen your search for support do check out Leukaemia Care UK who produce very good information and various support platforms including their Buddy Scheme where you can be connected up with someone who has walked the walk.

    Always around to help more or just to chat

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thank you Mike. You are a source of inspiration and I appreciate you reaching out. 

  • Hi Faith, I’m really sorry to hear about your relapse. 
    I relapsed in February 2022 after a little more than 2 years in remission. I didn’t have a SCT the first time, however

    i was able to try the Venetoclax & Azacitidine combination to get back into remission before SCT. 28 day cycles of Venetoclax daily oral tablets with the first 7 days coupled with Azacitidine injections.

    the first two cycles I was able to spend roughly the first week inpatient and the rest outpatient. This has been a far cry from my initial chemo treatment when I was constantly in the Hospital.

    the Azacitidine - as long as I took my anti-nausea medicine - wasn’t too bad. the Venetoclax - seemed much easier than what I recall of chemo the first round - but it massively suppresses your blood counts. I haven’t needed many transfusions post the first cycle, but I did catch covid which neutropenic & I did have scary low hemaglobin levels one time when we weren’t taking bloods weekly (I was outpatient). But overall I haven’t been as sick, haven’t lost as much weight, nor have I been stuck in a room as much as I did during chemo induction and consolidation years ago. I’m so very thankful for that

    after the first two cycles I found myself in remission again but still MRD positive. So we proceeded to round 3. Still awaiting the second biopsy result but fingers crossed and then we’ll head to transplant in a month

    i realise everyone’s disease and treatment is necessarily different but hopefully me sharing does give you something. make sure to drink plenty of water and to have weekly blood counts (if outpatient) and hopefully this amazing drug will see us both thru to SCT and lasting remission again!

  • Hi , I see it's your first post in the Community, i am also Mike and I help out around our blood cancer groups but more importantly in our dedicated Stem cell transplant (SCT) group that I see you have joined.

    The SCT journey is rather unique and regardless the type of blood cancer the journey tends to be very similar so do consider connecting in with the group when you are ready to start the SCT process as there is lots of help available from people who have walked the walk.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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