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Newly Diagnosed

Evening people!
Great site for information for a newly diagnosed! I'm just after a bit of advice please.

I'm 31 and have been diagnosed with CML, chronic phase. I'm fit and healthy and my specialist is recommeding I start treatment on Imatinib.

What I would like to know, if anyone can help, is if anyone else has been in a similar position and pushed for a bone marrow transplant. I have a sister who we wants to be tested to see if she is a match, if she is I would like to have a bone marrow transplant to try and cure this disease.

I know the benefits and side effects of Imatinib. but the one thing which I keep thinking of is that it will not hold off CML for ever. Eventually it will come back, I will be older and not as fit and unlikely to survive the bone marrow transplant. And also the diease will be progressing which makes the transplant less likely to succeed. Yes there are some exciting developments in the drug department, but there is no cure guaranteed, or even if they will work.

I'd just like to know peoples opinions regarding the bone marrow transplant, specifically those my age or younger. I won't use peoples answers as a basis for my treatment, I'd just like to be fully informed before I speak to the haemotologist.

Thanks!

My husband was 32 when he was dx 19 months ago. He too was offered Imatineb and it had been working until a few months ago. His specialist has discussed BMT with us but he does not have a sibling to match with. The risk of BMT far outweigh the risk with the drugs and no one really knows the limits to these drugs.

DH goes though phases of wanting a BMT, but then looks at spending months in hospital away from our daughters and would never forgive himself if something went wrong and he wasnt here with us :(

 

HTH

Hi and welcome,A bone marrow transplant offers no guarantee of a cure,The odds on your sister being a match is one in four.

I would start Imatinib,get  your Sister tested and then get referred to Prof Mufti at Kings Collage Hospital thats all your bases covered.

I myself am post transplant (ninety days)I had two brothers tested without a match,tried first and second generation TKI's.So I know the treatment plans

When your newly diagnosed its a lot to take in,good luck.

Michael

I can fully understand your thoughts and concerns.  My wife was diagnosed over 6 years ago when in her early fifties and otherwise very fit.  We were concerned that by trying Imatinib first, she may become too old  or too unfit to be considered for a BMT if the drug should subsequently fail.  However, we were advised that first she should definitely try what was then a relatively new wonder drug that was just becoming the first line treatment for CML.  Six years on and now knowing a lot more than we did in those very stressful months soon after diagnosis, we are very glad she started on Imatinib.  Whilst a BMT may provide a cure, that is not guaranteed and it carries its own significant risks.  The side effects with Imatinib exist and can be distressing at times but are infinitely preferable to the alternative.  As more research has been completed, second generation drugs have been developed and combination treatments may lead to a cure in the future.  If the drugs do not work well for you, you will still be young and fit enough to consider a BMT in due course 

Thanks people, after speaking with the specialist today I'm in complete agreement with everything that has been written above.  I've got another week (which will be my second) on Hydroxicarbamide before I move onto Imatinib (I refused the SPIRIT trial as I just dont want to take the risk).  White blood cell count is down from 140 to 121 and platelets from 800 to 527 so progress is good so far.

Theres so much to take in whilst also dealing with the fact that you've been diagnosed with this deadly disease so I'm very grateful for your thoughts on my question.

Now currently looking into fundraising from Leukaemia and Lymphona Research to help carry on the good work in whatever small way I can.

Looking forward to chatting more with you guys and gals over the coming months and years!

Neil
Northumberland

 A BMT is a very risky procedure. Please inform yourself as to the mortality rate of the institution you are goining to have it. One stat that I heard is that 50% of BMTs are dead within 5 years.

 Zavie