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Author Topic: Accceptable mortality risk for BMT?  (Read 576 times)
Lan Anh
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« on: August 20, 2017, 10:39:05 PM »

Dear all,

I come from Vietnam and I have a 7 years old son with thalassemia intermedia/major. He has been on regular blood transfusion every 4-6 weeks since 3 1/2 years old. He has a 2 years old brother who is 10/10 match. We have just gone to Taiwan for a thorough examination for BMT possibility. The result showed moderate iron deposit in liver and mild inflammation of liver (He was unluckily infected by HCV and has finished 6 months of HCV treatment). Another issue is that he has been transfused blood without leukocyte filter, which would increase the GVHD risk. The doctor said that in this case success rate of BMT is 80% with 10% mortality risk.

We are very confused and don't know what to do now, proceed with BMT or waiting for less risky treatment? Could you please give us an advice?

Thank you very much and wish you all the best
Lan Anh
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Lan Anh
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« Reply #1 on: August 21, 2017, 09:44:45 PM »

Dear Andy,

Please kindly help us, the doctor in Taiwan is waiting for us and we have to make decision soon.

Thank you very much
With best regards,
Lan Anh
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gabriellavanessa
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« Reply #2 on: August 25, 2017, 11:47:50 AM »

Dear Lan Anh,

my suggestion if you want look for other opinion, better go to bangkok, find Dr. Suradej Hongeng. My daughter done the bmt with him. if u want to know our experience, can send message to my inbox.

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Sharmin
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« Reply #3 on: August 25, 2017, 03:39:18 PM »

Lan Anh,

That seems like a high failure rate and high mortality risk.  You may wish to consult another clinic or wait for a safer alternative.  Keep your child's ferritin low.

Best,

Sharmin
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Sharmin
Andy
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« Reply #4 on: August 26, 2017, 02:03:54 PM »

I don't think you can even consider it if the mortality rate is so high.
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Andy

All we are saying is give thals a chance.
Lan Anh
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« Reply #5 on: August 27, 2017, 10:10:19 AM »

Dear Gabriellavanessa, Sharmin and Andy,

Thank you very much for your valuable advices. We are now confident to make decision not to go for BMT in Taiwan.

Dear Gabriellavanessa, we also think of going to Bangkok and would be very grateful to know your experiences there. Please kindly check your inbox and advise us.

Dear Sharmin and Andy, if Thailand doctor also confirms such high mortality risk, we will not consider BMT anymore. In that case, could you please kindly introduce any doctor who has expertise in thalassemia treatment that we can consult to find the best long term solution for my son at an economical cost?

Thanks a lot once again for your great help and looking forward to hearing from you.
With best regards,
Lan Anh


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Andy
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« Reply #6 on: August 28, 2017, 04:13:14 PM »

Quite a few people have gone to Thailand for BMT. If their success rate is acceptable, that may be your best option in terms of cost, also.
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Andy

All we are saying is give thals a chance.
Lan Anh
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« Reply #7 on: August 31, 2017, 09:47:20 AM »

Dear Andy,

Perhaps we will not consider BMT anymore. Could you please tell us if you know any doctor good at thalassemia treatment in general (not BMT) so that we can take my son there to consult the doctor about the most suitable medicine, diet,...for him?

Thank you very much for your kindness
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Andy
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« Reply #8 on: September 02, 2017, 06:57:17 PM »

I do not know of doctors in Vietnam.

I do not understand why the doctor would say the risk of mortality is so high with the BMT. 10% is a very high rate. I would not suggest totally giving up on the idea of a BMT, until you have talked to more centers. You might want to get another opinion at the hospital in Bagkok. http://med.mahidol.ac.th/en
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Andy

All we are saying is give thals a chance.
Lan Anh
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« Reply #9 on: September 05, 2017, 12:16:55 PM »

Dear Andy,

Thanks a lot for your advice. But besides mortality risks, we have known that there are many serious long-term effects of BMT such as: infection, GVHD, secondary cancer, organs damage, so we are very scared. We also heard that Luspatercept is on phase 3 trial and seems to be a very promising drug. Therefore, we think we should wait for it instead of doing risky BMT.
We also wish to try hydroxyurea while waiting for Luspatercept but no doctors in Vietnam prescribe it. So could you please suggest any good thalassemia center near our location so that we could go there to consult?

With many thanks and best regards,
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Pratik
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« Reply #10 on: September 06, 2017, 01:51:59 AM »

Hmm, maybe it's me but I don't think 10% is high. Many doctors in India says so too. You have to see there's 80% chance of success, 10% stands nowhere.

@Andy how does one die in a BMT operation? Marrow being rejected? I never understood it. If it's a failure, won't it simply reject?
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Andy
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« Reply #11 on: September 06, 2017, 05:19:15 PM »

That's a 10% death rate. It's ridiculous. Not acceptable at all. GVHD is usually what will cause death after a BMT. I have never recommended a BMT in India.
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Andy

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Andy
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« Reply #12 on: September 06, 2017, 05:27:53 PM »

Lan Anh, I have no information on centers that treat thal in Vietnam at all.


The only mention I find is this  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4563497/
Quote
In Vietnam, we have a thalassemia centre at the National Institute of Hematology and Blood Transfusion and several outpatient clinics at National Hospital of Pediatrics, Children No. 1 Hospital, Blood Transfusion and Hematology Hospital Ho Chi Minh city, Central Hue Hospital. In provincial hospitals, we have transfusion service but very variance.
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Andy

All we are saying is give thals a chance.
Lan Anh
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« Reply #13 on: September 07, 2017, 10:50:21 PM »

Dear Andy,

Thanks a lot for your help, we will contact them

Wish you all the best
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