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Anybody out there who has AML or CML and has had a transplant? Do I/ Don't I?

that wouldn't mind sharing their experiences with me please?

My name is Richard and depending on the bone marrow biopsy results due on Tuesday a transplant may be my best option to cure this.

However I would really like to know how it actually felt and the outcome of other people's battles. I would be very grateful for any responses.

Thank you

All the best


Best Answers

  • Accepted Answer

    Welcome to the Forum and pleased to see you are now signed up.

    I can understand that you are facing an anxious time and that you have many questions about the whole process. There is a lot of information available and if you have a look around the Anthony Nolan web site you will find they have booklets available which they will be happy to send to you.(In particular they have a book 'The seven steps, the next steps').

    It is a bit difficult to say how transplant will affect you personally because we are all different and not everyone has the same experience. I have already been in touch with you and given you an idea how it affected me. Transplant for me was basically a painless process but it is the after affects and general feeling of being unwell with things like sickness and fatigue and the many pills to have to take, you may also experience weight loss and loss of appetite.I think most people will agree and say that they didn't experience everything that's written down and which sounds awful.

    With a lot of patience and support from those around you everything will be okay, you have to be positive, taking one day at a time. I can remember just getting up and showered was enough for me some days but my wife made me do it and it was something to build on, just doing a bit extra each day. Be prepared to be pampered and if you fancy a cake or sweets go for it.

    I know you won't know until next week just what is going to happen so try not to worry too much, It may be a good idea to write down any questions you have before you go and see your consultant. My wife made notes in a diary and took this to appointments. There is so much info to take in. Next weekend it will be 3 years since I had my transplant for a blood disorder, hypoplastic Myelodysplastic, the stem cells I received were from an unrelated donor found on the Anthony Nolan register.

    Have a look at the postings on the Forum I think you will find them helpful.

    If any member has experienced AML and CML maybe you could share your experience.

    Good luck next Tuesday, let us know how you go on.

  • Accepted Answer
    Hi Richard
    I had AML and had a transplant from an anonymous donor 6 years ago and I am now well. I still have 6 monthly check ups in the late effects clinic at Hallam but so far so good :-)
    The treatment was hard going, but I had a lot of support and I was determined to stay positive and as Peter said take one day at a time. I tried to have a goal every day, even small things like getting dressed or eating at the table instead of in bed.
    Coming home was hard for me as I was very weak and needed lots of care. The antirejection medicine made me vomit constantly and I lost a lot of weight, but slowly , slowly this subsided and I began to regain my strength and I tried to laugh and remember that there is/was always someone worse off than me.
    Good luck


  • Thanks peter,
    As you may have gathered, it is the after effects that i am apprehensive about. Especially as I have had 1 major heart attack and 2 minor ones. I must stress that the care and treatment I have received from my 3 local hospitals, Hinchinbrook, Peterborough City and Papworth has been truly outstanding.
    Of course I will keep you posted. I am so pleased for you that your treatment is working so well
  • Hi Richard,

    It's good to see that you've signed up and I hope we're able to help you and support you.

    It's understandable that you are apprehensive particularly given your medical history, but I recall prior to my transplant having a variety of tests performed on me to ensure I was fit enough to undergo the transplant. I'm sure your medical team will have balanced the benefits you will gain from the transplant against the risk of putting your through the process and will not put you at any unnecessary risk.

    There is no doubt that the process is hard and though the actual transplant itself (having the cells infused) is a breeze, the effect of the chemotherapy leading up to it, which takes effect a few days after the transplant, is tough and will leave you very tired and feeling unwell for some time. None of us would hide that from you and I'm sure you are already aware of it.

    It's easy for us that have come through the other side to say go ahead, but there isn't one of us who wasn't every bit as apprehensive as you are before our own transplants. In fact I was so weak after 3 months of harsh chemotherapy that I almost asked my consultant to postpone my transplant as I didn't feel I had the strength to cope.

    Please keep in touch through here and let us know how you get on, and come to us for support when you need it. This forum was launched about a year after my transplant and I would have been so grateful if it had existed earlier so that I could have benefitted from it.

    No matter how hard it seems, try to remain positive and the outcome will hopefully be a good one.

    Take care and good luck,

  • http://patientcommunity.anthonynolan.org/profile/842/HelenH

    Hi Helen,

    Thanks for your honest appraisal of what you physically went through, I found it most informative. The results of my bone marrow biopsy went wrong, got to have another one next week. I will keep all those interested informed of my progress.

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