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AML RELAPSE AFTER 4.5 YEARS

This story isn't as negative as the headline suggests. I was diagnosed with AML I 2012 and was treated with chemo and a bone marrow transplant from an unrelated donor. Everything was perfect in my recovery and after 4 years I was back at work and had recovered all my strength. Then at the start of 2017, at my 6 monthly check up, my platelets dropped and after a biopsy it became clear the AML was back. 3 years on I am still in shock. None of my medical team, who have been wonderful, had seen anyone relapse after 4.5 years. Statistically the chances were 99.08% that I was in the clear. Anyway, I had the chemo again and another bone marrow transplant from the same donor. This time they also gave me his immune system. 2 years 10 months on and I am delighted to say I am still in remission. My recovery is slower this time because of GVHD, but that is probably a good thing. Has anyone had or heard of similar stories after a long relapse? I know I am incredibly lucky to still be here but it feels lonely being a statistical anomaly.

Dieseldrinker62

Comments

  • Morning Colin,

    Welcome to the forum, I'm one of the online community champions and a transplant patient for ALL having being diagnosed in 2012 like you.

    Your post is really insightful as I guess it highlights a concern we all have that our illness might come back. I'm not sure what the statistics are but I don't think it's common for it to come back so late afterwards, but it's probably not unheard of. It wasn't until 5 years after my transplant that my consultant told me for the first time, that they thought they'd cured me. Still after that, I sometimes get a niggle that I'm never safe from it returning, but my annual checkups give me some assurance that it will be spotted if it does.

    Thank you for sharing your story an I hope you're doing well with your recovery and the GvHD isn't being too much of a nuisance. It would be interesting to know whether you had GhVD the first time as I understand that can also have an effect against the Leukaemia.

    I wish you well with your recovery and hope someone can respond with a similar insight and make you feel less of an anomaly.

    All the best,

    Steve

  • Thanks Steve. Well done for looking after the forum and giving something back. I never posted in 2017 because I felt my story when I replapsed was too negative and I didn't want to scare people. I did get a decent amount of GVHD first time around ( if there is such a thing ) - mainly skin rashes. It took me around 18 months to get off the immune suppressants. Everything in my first recovery seemed perfect. This time because I have been given the donors immune system it's taking longer. The GVHD has caused my liver to be slightly aggregated, my joints sometimes ache and recently my eyes became dry and sore. I've been brilliantly looked after and it's all been controlled. The plus side of this is that GVHD hopefully mops up any rogue cells. Thanks again for your support.

    Dieseldrinker62
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