BMT from 9/10 match unrelated donor

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BMT from 9/10 match unrelated donor
« on: January 26, 2017, 07:38:05 AM »
Dear Andy/Others,
my son is 5 yrs old and is E-Beta thal and is undergoing regular transfusions. Our origin is India but I am currently working in US and his transfusions are done here in US from last 9-10 months. With doctors recommendation we did his HLA Typing test and when ran his reports through the registries, the best match we could find is 9/10 match from unrelated donor.Me and my wife are haplo matched.

Doctor in a known hospital Children's Hospital of Philadelphia (CHOP) advised us to think for BMT and as per him the new technique they use for BMT, the results should not differ between 10/10 match and 9/10 match. He said there is 75-80% success rate with 15-20% rejection and 5% mortality.He also refer that they process the donor's cells which reduces chances of GVHD disease.

I need a suggestion from senior players here. Should we opt for BMT or wait for better match/treatment?

-Anshul Jain

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Offline Andy Battaglia

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Re: BMT from 9/10 match unrelated donor
« Reply #1 on: January 26, 2017, 10:55:59 PM »
Gene therapy is curing HbE beta thals. My opinion is that a 75-80% success rate is not good enough. I would be more inclined to watch the progress of gene therapy. Advances in BMT are also on the horizon that will greatly reduce and possibly totally eliminate GVHD in patients. I would not allow myself to be rushed into a decision.
Andy

All we are saying is give thals a chance.

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Offline Himanshu Kumar

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Re: BMT from 9/10 match unrelated donor
« Reply #2 on: February 07, 2017, 01:32:40 PM »
Hi anshul,

Have you evaluated cord blood transplant? Please try reading about it.

Regards,
Himanshu
Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

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Offline Pratik

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Re: BMT from 9/10 match unrelated donor
« Reply #3 on: February 24, 2017, 07:13:50 PM »
I would agree with Andy on this one. Unless it's a sibling match, I wouldn't risk it, especially when we are so close to finding a better, less risky cure. He's only 5. He has a lot of room. For now your main goal should be to try to keep his Hb levels above 9 (10 if possible!) and chelate him properly so that Fe doesn't go above 700-1500 levels. He can totally lead a normal life and I firmly believe down in 3-5 years, we'll have a solid treatment (or treatments I'd rather say, multiple stuff in progress) and BMT will be a thing of past. He'd be only 10 or 11 max.

You can wait for a better option rather than trying to risk it, especially since it's an unrelated match. That'd be my honest advice and opinion as a thal.

Best,

-P
Every child is special.

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Offline JV

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Re: BMT from 9/10 match unrelated donor
« Reply #4 on: February 24, 2017, 08:49:27 PM »
I 100% agree with Pratik...time is on your side...

Re: BMT from 9/10 match unrelated donor
« Reply #5 on: February 27, 2017, 06:49:23 PM »
Thanks everyone. I am also in same opinion and will wait. Hope for the best to come soon.
 

 

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