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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.
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
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.
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
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
Hi Sally, Just been reading your blog bout your second transplant.Would love to know how your doing? My husband is waiting for a second transplant also