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Relapsed AML after 17yr post stem cell transplant

edited April 12 in General advice

My husband had a unrelated stem cell transplant in 2005 at 34yr for MDS -AML. This week we have found out that he has relapsed with AML so now needing more treatment and another stem cell transplant. Is there anyone who has gone through this with some positive news as he is absolutely devastated and not at all positive about coming through it again. I’m trying to be strong but not coping at all.

Comments

  • edited April 14

    Hi @Beaglegirl,

    I'm glad that you have found the Patient & Families Forum, and I'm sorry to hear of what you and your husband are going through. I'm sure the community on here will be in touch, but I also wanted to let you know about some of the support available from the Anthony Nolan Patient Services team, which might be helpful to you at this time. You can find out more here: https://www.anthonynolan.org/patients-and-families/get-support-us

    As part of our support, we have a free Telephone Emotional Support Service, specifically for stem cell transplant patients and family members. This is provided by Working to Wellbeing - a team of wellbeing specialists including qualified psychologists, with years of experience providing support for stem cell transplant patients. If you think this might be helpful, please feel free to email our team at patientinfo@anthonynolan.org to request a referral. You can find out more here: anthonynolan.org/tess.

    If you’d like to have a chat with us, please do call our Helpline - we are open Mon-Fri 9-5 (excluding bank hols) on 0303 303 0303.

    I hope this helps.

    All the best,
    Claire

  • Hi Beaglegirl,

    I'm really sorry to hear of your husbands relapse. I'm one of the community champions here on the forum and had a stem cell transplant 9 years ago for ALL.

    I guess the situation that you and your husband find yourselves in is one of our greatest fears and I for one live every day wondering at the back of my mind whether my Leukaemia will come back at some point. I can imagine just how devastating it is to be diagnosed a second time and potentially have to face another stem cell transplant.

    I don't know whether there are other patients on the forum that have experience of relapse so long after their transplant but if there are hopefully they can give you some insight. There are certainly patients here that have relapsed a lot younger into their post transplant years. There is a post on the forum from someone who relapsed 4.5 years post transplant and had to go through a second transplant which may help a little.

    https://www.anthonynolan.org/patients-and-families/patients-families-forum#/discussion/466/aml-relapse-after-4-5-years

    How has your husband been in the intervening years? Hopefully his health has been good and he is in a good condition going back into treatment? I guess he will have an idea of what he needs to go through and I would imagine that is part of the apprehension of having to go through it all again. I wonder whether in the 17 years since his first transplant the techniques and treatments have improved which might ease the severity of the treatment, and also the probability of a successful outcome.

    I know you're probably both still reeling from the shock, and all I can say is that we are all here on the forum to support you as best we can. As the name suggests we are all transplant patients and families and know what you are going through in terms of the transplant journey.

    As Claire has suggested, please reach out directly to the Anthony Nolan Patient Services team who will be able to give you support and advice. Lead Nurse Rachel in particular may have direct experience of your situation and may be able to give you some reassurance.

    I wish you both the best for what lays ahead. Please keep in touch via the forum to let us know how you're getting on and for us to support you through your husbands second transplant.

    Best wishes,

    Steve

    UnknownBeaglegirlClaire_AnthonyNolan
  • Hi Beaglegirl. I posted a few years ago on this forum because I had relapsed into AML after 4.5 years. I had to have the chemo and bone marrow transplant again. 5 years on I am still in remission. Mentally I found it really difficult feeling you are the only person to ever relapse after such a long period. Obviously 4.5 years is not 17 but I do hope you can take some positivity from this post. At the time they said I had a better chance than the statistics because the treatment had worked so well the first time. Hope everything goes ok. Feel free to write. Take care. Colin

    Dieseldrinker62
  • Hi Colin, Thankyou for your reply. He’s still in hospital and currently day 19 after FLAGIDA. He hasn’t lost his hair yet and coming home a few days a week for an hour or to for his own sanity. He feels absolutely fine so believe it’s not working. Could I ask what treatment you had and whether you got remission with your first induction? As the doctors keep mentioning rare and genetics and don’t really know what’s happening due to be so long ago.

  • Glad its going ok so far. I never got any answers as to why it had comeback after such a long period. I had done an intense job for a 3 month period before relapse but the experts doubted that it was the cause. I felt tormented by the fact no one could explain a unique situation. None of the Doctors knew of anyone who had relapsed after 4.5 years. Your period in remission is a lot longer. There were two opinions for me for the treatment. 1) Chemo and a new donor. 2) Chemo and the original donor as it had worked so well. We went with 2) but there is no significant statistical data one way or the other. The advantage with 2) was that they gave me the donor's immune system as well. This causes more graft versus host which mops up rogue leukaemia cells. Because i was 51 when I relapsed they only gave me one cycle of chemo before the transplant. Luckily I went into remission the first time. I also remember saying "this seems too easy" and it gave me doubts. Months later when the graft versus host kicked in it wasn't easy but it was manageable. The Dr's often told me the fact the treatment had worked well the first time meant they were hopeful it could work again.

    Dieseldrinker62
  • Colin, thank you so much for posting this and I hope it helps give Alison some hope.

    Fear of relapse is something that is in the back of my mind every day, even almost 10 years after my transplant. I'd find the prospect of going throug atransplant a second time a daunting prospect, particularly when you know what to expect.

    I guess in Colins and Alisons husbands cases it's like starting all over again, like the original transplant never happened, and its the same process to treat the cancer, get into remission and carry out a transplant.

    I recall from one of Alisons other posts that there is a thought it might be donor derived Leukaemia, so the same donor might not be an option and a new donor could give a better outcome. The original donor may not be suitable anyway after such a long time.

    Fingers crossed that a suitable treatment is established, a donor located quickly and that the second transplant proceeds smoothly.

    Steve

  • Morning, I’ve been speaking to Rachel at AN who is amazing but rather than keep pestering her Im wondering if anyone can relate? My husbands do in as are slowly coming up but Monday the day of his bone marrow biopsy his HB dropped normally around but 65/70 but was 56. He has suspected gout so might be that but I’m not too sure. He’s had a unit of blood but didn’t do much so had another yesterday. His neutrophils are 0.7 and platelets are 151. Any ideas would be helpful x

  • Hi Alison,

    I can't give you any advice on counts I'm afraid. All I would say is that I never paid any attention to my blood results and never tracked anything other than my neutrophils once I'd had my transplant. To me that was the only thing that was important, the rest I left to the doctors. If I needed a transfusion of full blood, platelets or plasma, that was for them to decide. All they would tell me was that something was a little low perhaps and I don't even remember being given any numbers.

    Generally if my red cells were low I could feel it as I would lack energy. Having a transfusion was like having my batteries charged and gave me my energy back.

    It's easy to get hung up on numbers when going through something like we do, but I'll bet if we tracked a healthy persons blood counts, they might also fluctuate occasionally. For me, I left all that stuff to the doctors as they understood what it meant.

    Hope this helps,

    Steve

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