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Hi! I am 15+ Years post BMT

edited July 2014 in Welcome
Hey, my name is Katy and I am 15 years post transplant. I was diagnosed with CML in adult strain when I was 5 years old in 1998 . Initially my parents didn't realise anything was wrong, they believed it just to be a stomach bug as I had a distended stomach and was very lethargic - abnormal in a 5 year old! I was referred to Barts hospital and diagnosed with CML and none of my family were a match. I was told I needed a donor a year post diagnosis to survive, and about 7 months later a match was found! I received an unrelated bone marrow transplant from a donor on the Anthony Nolan register - a lady from Holland who I have never met :)

I went through radiotherapy, chemotherapy and all sorts of drug trials because when I was in treatment, these therapies did not exist that exist now! I relapsed in 2000 and developed chronic GvHD of the skin, mouth, gut and joints. I was a keen dancer and attended dance school throughout the entire treatment process and the movement really helped my GvHD improve. I also had cranial osteopathy which was the most significant treatment I found. After 13 years, I went into full remission in November 2011 - the week I turned 18. I am now in my 3rd year post since getting the 'all clear'. I still have numerous problems which are occurring such as in gynae and late-effects and I am sort of on my own as there are not many people that have been through what I have been through and are still around today! - words from my doctor!

My most recent PCR was at 0.000% so I am going strong!! :)

I set up Kent Marrow at the University of Kent whilst at there University and do a lot of publicity work for Anthony Nolan in my own time. I am passionate about helping others with blood cancers and this is my brief introduction to this forum! :)

Comments

  • Hi Katy

    Pleased to read your interesting story and to have met you last week at the Focus Group meeting, I agree from your input at that meeting that you are passionate about helping others with blood cancers. You obviously work hard for Anthony Nolan.
    Keep up the good work.

    Hope your health continues to improve.

    Best wishes
    Peter
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