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I am 15+ years since transplant!
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!
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!