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Relapsed AML whilst transplant continues working

Hello
I was diagnosed with AML in 1989 and after being treated with chemotherapy ,reached remission where I remained for 28 years.
However I relapsed in 2017. AML returned in my face, neck and other hot spots but not in my blood.
I have undergone chemotherapy and a donor cell transplant in January 2018. 7 months in I have relapsed , scan showing AML in my neck. However the transplant continues to work and my blood counts are normal. I am about to embark on radiotherapy treatment . Has anyone else experienced this before. I feel very unsure and whilst i want to be positive, i am struggling.

Comments

  • Hi there,

    I'm sorry to hear of your problems and that you've relapsed. I don't know as much about AML as I had ALL, but it sounds unusual for your face and neck to be affected if the transplant appears to be working and your counts are normal.

    I hope somebody has some experience of this and can help and reassure you, but I'm sure the Anthony Nolan team will have heard of this and can help explain it in some way.

    After 28 years in remission and then have a transplant which seems to be functioning I can imagine that this comes as a blow, but hopefully is something that can be dealt with.

    All the best,

    Steve
  • Hello Jalymac 10, I have had AML 3 times now plus two unrelated stem cell transplants. With my 2nd transplant I got GVHD (graft versus host disease) which affected my leg, skin and bowel)...is this what you are asking about? I have not heard of AML affecting specific parts of the body - I thought the cancer is in our blood/stem cells. I apologise if I have misunderstood this. Wishing you well and I hope you get some answers x
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