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BMT

Hi, I've not been on the site for a while, lots going on since my 1 year check-up to find I am not responding to my 800 Glivec and therefore after several tests one of my brothers is a match and so on 1st February I go into hospital for a full transplant via my brother's stem cells. To say I am not scared would be an understatement! I am having a mixture of chemo and radiotherapy and will have the transplant on 7th Feb. So if anyone who has recently had a transplant would like to get in touch with me I would be most welcome (my e mail susan.wilson53@btinternet.com). I have so many questions to ask!! I am 51 and was diagnosed with CML in Aug 2005. I will be having my treatment at Manchester Royal Infirmary and my specialist is Dr Lucas.

Thanks for reading.

Sue Wilson

hi sue,
glad to hear that your brother is a match. however i am surprised that you are having a traditional BMT with all the trimmings (i mean radiotherapy) ......
please read my diary on the home page. i had my mini allograft at hammersmith over 3 years ago now... my younger brother was a good match....
the mini protocol has been extremely effective for those with sibling donors. less chemo is used -no radiation at all.

35-40 days after engraftment of the donor stem cells, 400mg of glivec is taken daily for about 12 months. this is to stop/delay relapse which has been the main problem with mini allograft techniques, due to the reduced amount of chemo.
this form on mini allograft differs from others by using glivec for up to 12 months. this ensures that any residual disease still lurking does not regain dominance and also means that you regain strength and, just as importantly, your body to learns to recognise your new immune cells as your own.

after 11-12 months glivec is stopped and pcr's are monitored closely.

in my case, the pcr tests showed very little sign of my residual disease coming back until well over 14 months post transplant.

as soon as my tests showed bcr/abl levels at 0.5% i was given the first small dose of mature donor T cells (2.5 million).
these cells are given by infusion just like a normal blood cell infusion and only take a few minutes from start to finish.

this is the key part of the whole transplant in leads eventually to a cure. it is called 'donor lymphocyte infusion' or DLI.

i have since had another 3 doses, each one significantly larger than the previous one.. the last and largest- at 50 million T cells -
was around 3 months ago and i am at last showing a significant lowering of bcr/abl levels....
the last test was 0.053% (a drop from 6% within 6 weeks.)

i know doctor lucas is probably very aware of this study by prof.charles craddock (QE birmingham)and doctor eduardo olaviarra (hammersmith hospital, london) and it may well be that he does not consider it right for you.

however i do suggest that you at least ask him about the possibility of you having this form of transplant.
it is much easier to tolerate, especially for those of us who are slightly older and the study has been so successful over the last 5 years (data published this year at ASH) that at least 3 other UK centres are now using this protocol.

best of luck,
sandy C ;o)

ps. elizabeth also had a mini allograft (alhtough not as part of the same protocol)which has successfully eliminated her cml.

Hi Sue
I would like to fully support what Sandy has said about the mini sct. It is certainly worth discussing with your doctor. It may be as Sandy said that there is a very valid reason for you to have a full SCT but it is worth discussing the pros and cons as the success rate for this form of transplant is very encouraging. The risks are much less than those of a full transplant and the whole procedure is far more tolerable with very few side effects and no TBI. I was 53 when I had my transplant and my case was quite complex - you can have a look at my diary - but this mini sct was extremely successful at getting rid of my CML with the help of donor lymphocyte infusion after the transplant. If you would like to correspond privately you can email me at erees@hotmail.com and we can exchange phone numbers.
Good luck - I can understand how you feel, it is very scary.
Elizabeth

Hi Sue

My husband received an unrelated stem cell transplant 3 years ago with chemo and total body irradiation, after a clonal evolution or mutation that blocked Glivec. It was not the best of times (I was lucky enough to stay with him for 8 weeks), but he tells me that it was not nearly as bad as he was anticipating. The best advice he offers anyone is to go with the treatment, think positively and look forward. I am certain his very calm, positive mental approach was most important to the transplant's success...and yes, it was a success. After 3 years he still has PCR of 0, the doctors tell us CML is now highly unlikely to return. The stem cell rather than BMT does, I believe, increase the likelihood of ongoing GVHD, but it is this process that helps fight the CML, so it's a 2 edged sword. My husband has had a few skin problems (itchy rashes) and in the first few weeks some diarrhoea, but with time these problems become less and less. He commented this weekend that he cannot remember ever feeling as fit and healthy as he does now. We send you every good wish for an equally successful treatment. If there's any questions you would like to ask about my husband's experiences, please do.

Thank you Jesse for your kind message. I would like the opportunity to ask your husband abut his experiences with the transplant, side effects, sickness, hair loss etc. If you could e mail me that would be great.
Many thanks
Sue

Hi
I just wanted to say that I want to wish you well in your journey of transplant. I'm sure it's a scary one, but believe and you will succeed.
Take very special care.
Vanessa
CML Dx, June 06

I would like to thank everyone who has sent me e-mails wishing me well for my stem cell transplant beginning 1st Feb! The e-mails have kept me positive and have included lots of valuable information from people who have gone through a transplant and now I am even more determined to beat this disease. Any further e mails would be greatly welcomed.

Sue