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BMT

Hi, is there anyone out there who has had a succesful BMT from a non sibling donor?
I may be heading down this route following bad side effects on Dasatinib, although my speciaist want to try Tasignia first.
It was a blow for me because I was getting fantastic results from the Dasatinib after sub optimal results on Glivec.

Hi I am 91 days post transplant so far so good,25% pre transplant 0.004% last week, no signs of GvH,no infections.Early days though.

If you were doing  fantastic on Dasatinib,no reason for you not to get great results from Tasignia.Most people who do well on one 2nd generation TKI do well on the others,just a case of finding the one with the least side effects.

 

Michael

Thanks ever so much for your prompt positive response both on the drugs and the BMT. You gave me a real lift when I got your reply.

Please let us know how you progress with your recovery, fantastic results so far, every time you have good news it gives all of us BMT in waitings out here a boost as well.

Regards

Chris

Hi Michael

It is good to know that you are doing very well three months after the transplant. I was diagnosed this year in may and I am taking standard dose of glivec 400 daily. I am at Kings college hospital London. I was advised by my consultant not to go for a transplant because of the risks/complications associated with it. I am going to get my brother HLA tested just to be on the safe side.

I am 29 years old. Are you at kings too if yes then who is your consultant? I would appreciate if you could clear my mind on few things like why did you decide to go for a transplant. When were you diagnosed and how long did you try the TKIs? Who is your donor? Your history of the disease and at what age were you diagnosed?

Regards

SHAZ

Hi Shaz,

I see Dr Ho at Kings,He advised me to have a transplant,its was a unrelated donor 85%match and the BMT took place at Kings.

BMT is very risky and should not be rushed into I was diagnosed in May 2007 at the age of 46(enlarged spleen),Imatinib 400g daily.

Then Imatiinnib failure 16 months later,I was refered to Kings started Dasatinib December 2008.

Major cytogenetic response June 2009.

Stayed at aprox 25% till June 2010 then  diagnosed Trisomy 8.

I had my two brothers tested sadly no matches,I have Diabetes mellitus so Nilotinib was not possible.

If the Kings CML team looks at your medical history and advise a certain treatment plan your a fool not to follow it,I would prefer to be still on TKI's but if they stop working you have to try the other options,you may have noticed that a member of the forum has recently died after GvHD

Thanks Chris,

I will keep you updated warts and all,It used to worry me that we get so little feed back from People who have BMT untill I followed up some of them,They now live normal healthy lives and have no need to visit here,Ok a few sadly loose the fight and it is a risky procedure.But in your case TKI's are still working for you which is great.

Michael,

Just a quick question.  How did imatinib fail you? Was it just unexpected or had you been struggling with side-effects/resistance from the beginning?

Thanks

Ian

Hi Ian,

When I was on Imatinib I was under the care of my local hospital,I had no problems with Side effects ,Lets just say my treatment was not handled as good as a CML specialist unit such as Kings.

so was the Trisomy 8 a reason for the BMT?

My husband was on Imatinib for 18 months but it never worked well for him and now on Disnatinib but also has Trisomy 8. He was seen at Hammersmith this week and they have taken bloods for mutation and bone marrow matching.

http://atlasgeneticsoncology.org/Anomalies/tri8ID1017.html

Trisomy 8 has apparently no prognostic significance in CML; +8 may arise after interferon and/or imatinib treatment. It's significance is unknown.

The presence of Trisomy 8 is not a reason to have a stem cell transplant.

Sandy

It was not the major reason,Trisomy 8 is a change in your cells Its another factor to take into account,The main one for BMT is how effective TKI's are,Is their a matched donor, your age and general health.And if you have any blast cells are taken into account.They then work out your chances of success (they have access to a lot of data compiled from their own and other transplant units )

Your Husband is at a very good Clinic so he should get very good advice,Hammersmith and Kings share alot information between themselves and the doctors all know each other.

Thats a very fair comment Sandy,

I agree,The presence of Trisomy 8 on its own ,is not a reason to have a stem cell transplant.

Hi 

Just to say that there are a good few post transplant patients around!

I am 3 years post mini SCT, well 3 years next week and I have been PCRU since the transplant. I did have a sibling donor though. I had a very easy transplant and one or 2 problems since but no GVHD. I am currently waiting for my latest PCR. 

I was intolerant to both glivec and dasatanib so I was advised to have the transplant. It isn't an easy decision to make.

Good luck with your treatment and if I can answer any questions please don't hesitate to ask.

regards

Susan

 Thank you for your information Susan, another cracking BMT result is great to hear.

Hi Michael

Thanks for the information. I see Dr Ho too. I agree with you completely if Kings CML team advises someone about the transplant I think they should follow their advice. Did you have a mini or full transplant? Yes I read about David. I pray the best for his family.

Regards

SHAZ