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Hi everyone. 

So I first hade AML in 2013, I had 3 rounds of chemo in the trial AML17. I stayed in remission until June 2022. In June 2022 I found a lump in my breast and I instantly thought if it was cancer then it would be breast cancer. It turns out it was actually myeloid sarcoma so the tumour version of AML which I didn't even know existed. I was treated with FLAG IDA and I had total body irradiation in prep for a stem cell transplant which I had in January 2023. Things were going great and then I had a routine bone marrow in September 2023 and the results came back that I had relapsed again and my transplant had failed. I have I was given 9 months to live. I started azacitadine shortly after and it had been keeping the cancer cells from spreading. Last month I was told the azacitadine was no longer working so I was given a donar lymphocyte infusion and I am waiting to see if my body reacts to it. I also have started a new chemo regime where I still have azacitadine but it is alongside venetoclax. Has anybody else experienced and thing like this? 

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.

    I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well……. especially as I have had 2 Allo (donor) Stem Cell Transplants the first in June 2014 with the second in Oct 2015.

    I had a number of DLIs following my second Allo SCT and this turned the tide as it looked like my second SCT was also going to fail

    Lets see if any of the group members can give you any support with regards to the treatments.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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