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Hi everyone,
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Can my AML return?

I am Jane Mill, and have just joined the forum. I am 60 years old and am 2 years post transplant. I have had a very good recovery. The only thing really that I have to deal with is tiredness and do not feel able to work. I needed one DLI as my T cells were low. I have since been told that they are now up to 100%. If that is the case, does that mean the AML cannot come back? My logic tells me that if I have 100% donor T cells, I have 0% of my diseased ones. Or can they decrease again? When I asked my consultant, he said they would just keep monitoring it, which suggests to me that the donor level can decrease. Am I right in this? And how can this be if the diseased cells are all gone?

Best Answer

  • Hi Jane and welcome to the forum. I'm one of the online community champions.

    Your question is one that we all ask ourselves about our respective illnesses and we all have that niggling thought about the illness coming back as I suppose there is always the risk of a relapse. I'm now over 4 years post transplant and I guess the longer you go the more comfortable you feel and I now feel quite safe. My last checkup was about a month ago and for the first time my consultant actually used the word 'cured' which gave me a great deal of comfort.

    My chimerism has been at 100% since about 3 months post transplant without DLI so my cells clearly took well to my body. I don't know for certain but I would also guess that having 100% donor cells means no Leukaemia too and you can probably get some comfort from that. My consultant has also told me previously that there is no sign of my Leukaemia down to a molecular level which I have also taken to be a sign that there is nothing left.

    I think the monitoring we all have is also reassuring as we know that any early signs of things going wrong can be picked up early, but as time goes on the checkups get less frequent and my next one isn't for 12 months. As my consultants letter to my GP said I can always contact my transplant team if I have any concerns in the meantime.

    In terms of tiredness and fatigue, I found it took a long time to get back to how I felt before, if indeed I did, and I've often heard the term 'new normal' be used. I think we have to accept that what we have been through has taken it's toll on our bodies and things might not get back to how they were and that we need to adjust to our new abilities and any limitations. I will say that 4 years on, I generally feel as fit as I did before it started (I was never an athlete) and am able to do my job as effectively as I did beforehand. I guess the ability to work depends on what you do for a living and how tiring it is. I do get tired from time to time but I take it as my bodies way of reminding me to slow down and have a break.

    The one thing my illness and the transplant process has taught me is to enjoy life and not get stressed about things that used to bother me. If I can't do something today it will still be there tomorrow.

    All the best,



  • Hi Jane,
    I don't think the chimerism has anything to do with the disease unfortunately - it just means you are fully your donors cells now. The theory being your donors cells should now be able to fight the diseased cells (I think cells go wonky all the time but your immune system should sort it out but when you get cancer it means the immune system has stopped doing what it should do). It is effectively a reboot.
    I have myeloma, which is incurable, so I know the disease will come back at some stage, just hopefully not for a long time. So the fact I might have 100% chimerism doesn't mean the disease won't come back. I am pretty sure with AML though that the transplant is curative but that is probably a factor of the disease type rather than the chimerism.you are cured.
    All the best,
  • Sorry my post didn't end properly - I meant to say it is probably the disease type which dictates whether it will come back or not, rather than whether you are 100% your donors cells or not.
  • Hi Jane

    Chimerism is a good indication of how well the transplant has worked, so 100% is the best it can be and great news. Unfortunately you can still relapse when you have 100% chimerism and this is because the disease can be to aggressive and the desired graft versus leukaemia effect does not work. After relapse you would then expect the chimerism to fall quite rapidly as the diseased cells take over. If we think a patient has relapsed this is either because of a change in blood results and/or drop in chimerism and/or any physical changes like increased bruising, unmanageable infection etc. So monitoring of your routine bloods, chimerism and in some cases minimal residual disease is important.
    However the longer you are post transplant the less likely it is that you will relapse. In some centres at 2 years they stop monitoring chimerism altogether. Your appointments will become less until eventually, usually at around 5 years you will only need a yearly check up. And this is not necessarily to check for relapse but more because we like to ensure you have no late effects of the treatment like affects on hormones, fatigue etc.

    I think it can take a while for patients' to gain the confidence back in their bodies that they will be OK and this is normal. It is good that your transplant centre is keeping a close eye on you and it doesn't mean they are worried, its normal practice. You are doing really well and hopefully reading the experiences of others who maybe have had a tough time or not also doing well years later will give you confidence and reassurance.

  • Thank you all for your replies. It certainly does help to get a fuller picture of what is going on. And yes, Hayley, most definitely I find it very helpful to hear of others' experiences. I am generally a very positive person I would say, although it is difficult for friends and family sometimes to understand how I feel, because it does not seem logical when all is going so well. Thank you very much.
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