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Anyone on here with APML?

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KatieS Total Reaction Points: 0
Hello everyone,
I am new to this forum and wondered if there was anyone else on here who has/had APML?
I have ampl, i relapsed during my chemotherapy and I am now being considered for a stem cell transplant. I am not sure what to do, whether to go for an allo or auto transplant or just continue with arsenic treatment.
I would really appreciate some feedback and to talk to others.
Thanks,
Kate.

Answers

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Kate and welcome to the forum, I'm one of the online community champions and a former patient myself, having had a transplant just over 4 years ago for ALL.

    I must admit I haven't come across APML before but having done a little research I see it is variation of AML and also see that SCT is a possible route to those that have relapsed after induction therapy, which is the situation you find yourself in.

    There may be someone here who has been in the same situation, and I'm sure some of the Anthony Nolan team may also be able to offer advice. I guess the choice of allo or auto transplant is one that your medical team will make and may be dependent on the availability of a suitable donor. Have your team said anything to you about looking for an unrelated donor or perhaps matching any siblings you might have?

    If you do go down the transplant route, the process will be the same as we have all gone through so we can all help with support and advice when you know what is happening.

    In the meantime how has your treatment gone so far and how are you feeling at the moment?

    All the best,

    Steve
  • KatieS Total Reaction Points: 0
    Hi Steve,

    Thanks so much for replying. Yes APML is a rare subtype of AML. It's rare for an APML patient to need a SCT it is only offered when you relapse. I am struggling to find information on it regarding APML.

    My treatment has been a mixed bag so far. I started with three rounds of chemo, the AIDA regime, after the second round I went into remission, but after the third round I experienced terrible double vision and they then found the leukaemia had relapsed into my CSF and back into my bone marrow. So everything changed rapidly and I have now completed 15 lumbar punctures and intrathecal chemo and an 8 week round of arsenic. It has been gruelling, but it appears to be working and my latest bone marrow biopsy results cannot detect any leukaemia. However, my consultants are now talking about having a SCT. They said it is my choice whether I have an auto or allo and in my case there isn't really a right or wrong option. They haven't told me if a donor has been found yet, I find out on Monday. I can't have my sister's stem cells as she had Aplastic Anaemia 12 years ago.

    If I am honest, I am so nervous about the transplant, more so than anything else I have been through. I am feeling so low at the moment. Physically I am probably the best I have been since diagnosis, but mentally I am struggling massively.

    Kate.
  • greg777 Total Reaction Points: 62
    Hi Kate,
    I don't have any experience with APML but I do recognise a lot of what you say from an emotional perspective. I too was given a choice between auto and allo and I also felt well before the transplant so it was a very difficult time deciding what to do. I ended up having both (a tandem transplant). In my experience, the actual process was virtually identical - they are both tough but do-able - i was isolation for 2-3 weeks with both but was lucky that i didn't have any complications either time. the big main difference for me was the post-transplant experience. I recovered pretty quickly from the auto, it took a long time to recover from the allo. There are more serious risks with the allo so hopefully your consultants have told you about these so you can make an informed choice about the risks and benefits of each treatment.
    Wishing you all the very best,
    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Kate,

    It's good that your latest biopsy shows that you are clear of the Leukaemia. I had lots of lumbar punctures myself as part of my chemotherapy and for a year after my transplant to make sure my central nervous system was clear, although there were never actually any signs of the Leukaemia getting that far.

    Greg has given you some insight into the Auto vs Allo transplants having experienced both and as he notes the process is generally the same for each. As he says the Auto probably carries fewer risks as you shouldn't be at risk of GvHD as the graft and the host are the same. Your medical team will no doubt advise you on the risks of each transplant route, as well as the benefits and the potential outcome as one might have a better success rate than the other.

    Facing a transplant is a big thing and everyone feels nervous so you're not alone in feeling the way you do. I was so unwell before mine I didn't feel ready for it at all but in the end I made it through and am here to tell the tale, as so many of us here are too. We will help to support you as you go through the transplant and the Anthony Nolan team are always on hand with the more technical stuff.

    Please let us know how you get on today and keep us posted as things develop.

    All the best,

    Steve
  • KatieS Total Reaction Points: 0
    Thank you so much Steve and Greg for getting back to me. I really appreciate it. I actually feel so overwhelmed by the thought of the transplant and going through it all. I think I am more worried about how I will feel in myself afterwards and whether of course it works.
    I have been told that a relapse in my CNS is not a good thing at all, so I am super worried about that especially. But I will talk to my Consultant today and get as much information as i can.
    It is so reassuring to hear you have both been through this and come out of the other side. So lovely of you to help others like me.

    Greg, may I ask how you felt about having the two transplants? Did you chose to have both, or did you need the allo after the auto? Sorry, I am not really sure how it all works.

    I will let you know how i get on today. Thank you so much for taking the time to chat to me.

    Kate.
  • greg777 Total Reaction Points: 62
    Hi Kate,
    I am not sure how relevant my experience will be to you, but here is a bit of background. I have myeloma, and the standard of treatment is an auto. However, because I was relatively young to get it and because it is incurable, I was given the choice to do an allo to try to give me as long a remission as possible. So I wasn't in the position where an allo is really the only option (which I know a lot of people are). Indeed, there is no guarantee I will end up any better off than if I had just done an auto. And I felt pretty well beforehand so it was a really tough decision whether to put myself through it or not. I was made aware of the risks of an allo (although I don't think I really understood them!) At the time, I don't think I really thought about it that much and just went for it. I think I was pretty lucky that I didn't have any problems with the actual transplant either time. But I got unlucky and had quite bad acute GvHD after the allo and spent nearly two months in hospital. It was horrible, at the time I massively regretted doing the allo and I sincerely thought I wasn't going to get through it. It took about 8 months but things improved and now 15 months post-transplant I feel completely normal again. So I suppose I am proof that you can come out of the other side and feel really well again. I experienced some of the lowest lows that I have ever known though, and sometimes it is easy to forget, so for anyone facing the same dilemma as you, all I can say is take your time, listen to the experts, really think about what is right for you, and then once you've decided, have confidence that you made the right decision for you and just go for it (whatever that is).
    Hope things went well today and please let me know if there is anything else I can help with
    Greg
  • KatieS Total Reaction Points: 0
    Thanks so much for telling me that Greg, you have been through so much and are doing so well, amazing. I too feel like I am experiencing some massive lows right now. I am a positive person generally, but i just feel like I am struggling massively at the moment. You are totally right though about making the decision and going for it!
    So yesterday, after much discussion with my consultants I decided to go for an AUTO transplant. For me and my situation it just seems the best option. I am so scared and apprehensive, but that is the decision made and I need to see it through.
    Having my stem cells harvested at the end of the month....so it's all go! Blooming terrified!!
    Kate
  • greg777 Total Reaction Points: 62
    Hi Kate,
    Really pleased you have a way forward -go for it!
    Please keep us updated as to how you get on, and any questions at all, please ask away!
    All the best,
    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Kate,

    Thanks for the update and whilst I know it is daunting it will hopefully stop you relapsing again and be a permanent cure. We will all be here to support you along the way and the one thing you will find from this forum is that you are not alone and there are lots of people going through the same situation and many more who have gone through the process and come out the other side.

    My best advice is to set off into the transplant with a positive attitude and a goal to get through it and recover quickly and try and stay positive throughout and focus on that goal. There will be highs and lows along the way and days when you feel like giving up, but you will get through it as I and many others have.

    I wish you all the very best and please keep us up to date with your progress. Keep coming back for support and to ask questions as things crop up that you are uncertain about as no doubt somebody here will have experienced it before.

    Best wishes,

    Steve
  • SuePSueP Total Reaction Points: 51
    Hi Kate,

    I can't add much to what the others have said. My problem was lymphoma, not leukaemia. I had an autologous transplant followed five and a half years later by an allogenic one. The autologous one wasn't pleasant but had far fewer risks and side effects than the donor transplant so I think you've probably made the right decision. My hospital say this type of transplant has a very good success rate, although I did relapse eventually.

    Take your laptop or equivalent into hospital with you so,we can keep supporting you.
    With very best wishes,
    Sue
  • KatieS Total Reaction Points: 0
    Thank you guys, really appreciate all your comments and support. It means so much to me.
    I will keep everyone updated. Starting the stem cell harvest at the end of the month, so it's all go!
    Kate.
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