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Hello! AML/MDS

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Gem03 Total Reaction Points: 0
Hello everyone. I’m new to the site after discovering I am going to have to have a SCT. I had AML last year and responded well to chemo with the disease going into remission and after 5 months in hospital I was home by Christmas. My bloods however have not recovered properly and although I am still in remission a bone marrow biopsy suggested MDS. For years I had always been told I was neutropenic and that it was auto immune but they now think it was likely MDS back then and that is what led to the AML. Won’t lie I’m very very very worried and scared but reading some of the positive discussions on here have already given me hope. I’m lucky that there is a donor on the register that is a match but, as I’m not urgent, the transplant is not going to happen until October/November time - so plenty of time to sit around and worry especially since I’m not allowed back to work in the interim!

Comments

  • Rachelj01 Total Reaction Points: 63
    Hello Gem

    Welcome to the forum! It's good to hear that you have a donor and are well.

    I was diagnosed with AML in March 2015 and underwent a transplant. It's a very daunting experience and at times lonely so please don't hesitate to use the forum, we are hear to support you and share your experiences.

    I'd strongly advise, trying to occupy your time....you are absolutely right about having time to worry and worrying won't help.

    Rachel
  • RobA Total Reaction Points: 29
    Hello Gem,

    I have a similar history to yours. I was diagnosed with AML in 2011, I achieved remission but a routine blood test in 2014 identified a low neutrophil count and after further investigations I was diagnosed with MDS which my doctors thought was chemo related. I had a sibling SCT in May 2015. All then went well for a period of 18 months or so until a routine biopsy in December 2016 revealed I had relapsed. To cut a long story short I had a 2nd transplant in August 2017 after a gruelling journey - this time from an unrelated donor. I am now approaching a year post transplant and I feel almost back to normal. There have been lots of ups and downs on the way but I count myself lucky to still be here.

    I echo Rachel's comments; worrying is counter productive. It is obviously a normal reaction but it is easy to let this consume you. Try and stay positive; I am convinced that this is what has seen me through this part of life's journey. You will find a wealth of information on this forum. I am sure that any questions you have will have been addressed at some point.

    Wishing you all the best,

    Rob.
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