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Hello...my story...

Hi I'm Sally, 33 yrs old. I had my first BMT for Aplastic Anaemia and Myelodysplasia in November 2011. I had previous ALG treatment for the APlastic Anaemia 10yrs earlier which worked for a while. Unfortunately the first transplant failed due to bad GVHD and the CMV virus reactivating, and the treatment for that virus was toxic to my new cells. I went on high dose steroids and ended up having a second transplant in June 2012. They used the same donor but harvested the cells differently the second time. I had terrible 'moon face' - very puffed up due to the steroids, I looked like a completely different person. The second transplant worked like a dream, it was a completely different experience. I still had issues with CMV but it was managed better, although meant I had lots of other drugs for treatment. My transplants were at Kings College London and I had some after care at my local hospital in Northampton. I was off work ( I am Regional fundraiser for the East Midlands for Teenage Cancer Trust, although was one for Marie Curie at the time) for 18 months in total, a very long time and overall spent 7 months in hospital.

I am happy to say that now, 19months post transplant, that I am very well in terms of that. My bloods are all well up in the normal range. I am off my immunosuppression and will have venosections (not sure on spelling!) to get rid of the iron starting in a few weeks.

A problem I have developed is Avascular Necrosis in both hips, so I need them both replaced. I walk with crutches and have lots of morphine for the pain. Both my hip joints have collapsed. This is due to the large dose of steroids I was on between my two transplants. They can cause lack of blood to the bones and lead to AVN. Bad luck I suppose but I am so very happy and grateful to be alive. I will never waste another moment of time. I still work full time and love my job.

I am very happy to talk about everything so please ask me questions or chat if you want to.

Comments

  • I forgot to say I wrote a blog around the time I had my transplants which is here....http://punkamunka.blogspot.co.uk/
  • Tried to put my transplant blog address in here but it removed it!
  • edited January 2014
    Hi Sally, welcome aboard and thanks for posting. I'm sorry your blog link didn't show up. I will check and see if we can rectify that. Anneliese
  • Hello Sally, my name is Peter, I am a bit older than you at 65.
    Very interesting to hear of your experiences and 2 transplants! Pleased to hear the second was successful.
    My transplant was in May 2012, I didn't have too much trouble with GVHD which was managed with short doses of steroids and lots of Diprobase. I was lucky too both me and the donor were CMV negative which was a big plus I believe ( thanks due here to Anthony Nolan for finding my donor).
    Its good that you have been able to return to work after such a long time off. In my case I was working up to transplant and then seized the chance to retire.
    Before transplant I had been having venesection for more than 10 years, I had an excess of iron in my blood known as haemochromatosis, this was managed by the venesection which keeps the iron levels at a safe level.
    Hope these comments are helpful.
  • edited February 2014
    Hello I'm Becky, I had my transplant in 2012 at the age of 17 I had acute myeloid leukaemia with a flt 3 chromosome growing on top of the cancer. Due to all the medications I was on I now have secondary illnesses, such as osteoporosis in my spine, a vascular necrosis in both my knees and post traumatic stress disorder
  • Hi Sally I hope you don't mind me asking what CMV problems did you have? I'm on my 3rd CMV activation.
  • Hi everyone,
    I've been posting since Jan but don't know if I did this bit.
    My history - diagnosed AML April 2008, 3 courses chemo over next 4 months on a trial (think it was 15). Lucky to gain remission on first attempt.
    6&9 chromosomes had changed places so worst prognosis for future, referred to Southampton for stem cell transplant from my brother.
    Underwent STC in August 2008.
    CMV & C-Diff 3 months after STC
    2yrs later shingles in upper right quadrant of head & eye. Still get pain.
    Christine
  • Hello Sally,

    Glad to hear your 2nd transplant has gone well and you are able to carry on with your life.

    Steroids have a similar effect on me. I had some heavy doses in 2006 and went from a size 12/14 at the start of the year to a 24/26 by the end, with the moon face and a hump at the back of my neck. Horrid drug but I guess it has its place in fighting the nasties. With me it takes about 18 months after getting of steroids before the swelling finally goes. Gosh how much better I feel when I can wear smaller clothes.

    I feel that having cancer has probably been good for me - other worries and trials do now seem insignificant don't they.

    I try to live for 'now' and try to remain cheerful. I don't always manage to do either but I do try because, for me, if I allow myself to mope around I semm to get even mor fed up.

    Anyway, all the best and I wish you well.

    Jean
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