Advice on BMT

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Advice on BMT
« on: December 29, 2017, 03:10:47 PM »
Dear Friends,

My 4.5 years old thal major son has an HLA matched sibling who is 6 months old now, and now is the time to take a decision and put a treatment plan.

I need your kind advice especially from parents whom have already conducted BMT for their children, i am concerned mainly about success rate, side effects (Fertility) and Chemo intensity.

Please share your BMT journey experience and kindly give me any advice which may be helpful (including doctor/hospital recommendation).

Thanks i advance.

Re: Advice on BMT
« Reply #1 on: January 18, 2018, 12:36:43 PM »
Hi Friends,

Any suggestions please?

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Offline zahra

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Re: Advice on BMT
« Reply #2 on: January 23, 2018, 05:15:21 AM »
Are you sure this is the right time?
One factor that is important is the size difference between donor and recipient.  Larger size of donor means better dose of bone marrow can be harvested safely which means better chance of engraftment.
If you chelate regularly and transfuse regulay you can wait till the suze difference isnt so huge.
I am no expert. Just my observation of a few cases.

Zahra

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Offline Andy Battaglia

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Re: Advice on BMT
« Reply #3 on: January 24, 2018, 02:37:53 AM »
One thing I think can be very helpful is to contact Dr Sodani with any questions and concerns. http://www.curethalassemia.org/free-advice-on-bmt/
Andy

All we are saying is give thals a chance.

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Offline EugenioLaMesa

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Re: Advice on BMT
« Reply #4 on: January 25, 2018, 08:47:51 AM »
I also suggest to read all the FAQ written by Dr. Sodani:
http://www.curethalassemia.org/faq/
Eugenio La Mesa
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Cure Thalassemia
Live without Thalassemia major - No more transfusions
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Re: Advice on BMT
« Reply #5 on: January 27, 2018, 07:55:36 AM »
Thanks friends for your replies, i will seek an advice from Dr. Sodani.

I am however more interested in the experience of parents whose children have done BMT, i know that Johns Hopkins are successfully using low chemo approach for Thals, but unfortunately i cannot afford to travel to USA so i am seeking an advice if this low chemo approach is experienced somewhere else. I really want to minimize the chemo effect on my son as much as possible.

Re: Advice on BMT
« Reply #6 on: February 13, 2019, 04:00:19 AM »
Dear Friends,

This is to inform you that my son underwent BMT last July 2018, day 0 was July 25th and last chimerism test showed 100% donor cells.

We went to Dr. Sunil Baht in Bangalore India, he is brilliant and very professional, heading a team of experienced staff.

They used both the saved cord blood as well as bone marrow extracted from the matched sibling following a reduced intensity conditioning.

So far so good, he is doing very well and is headed back to school at the beginning this year.

Thank you friends for all the support.

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Offline Andy Battaglia

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Re: Advice on BMT
« Reply #7 on: February 16, 2019, 10:31:58 PM »
Please continue to update us on his progress.
Andy

All we are saying is give thals a chance.

Re: Advice on BMT
« Reply #8 on: February 19, 2019, 08:15:11 PM »
so happy to know this great news.. now only few months away to complete one year milestone.. good wishes ..

Re: Advice on BMT
« Reply #9 on: February 21, 2019, 05:47:09 AM »
can you also update about the diet which your doctor recommend.. my son got a cough and its taking longer to heal..

Re: Advice on BMT
« Reply #10 on: March 04, 2019, 04:03:07 AM »
At first the doctor did not allow any uncooked food, fruits and diary products. Then he gradually allowed some fruits which can be peeled and diary products.

Now my son is eating all kinds of food except for fruits without a hard peel (strawberry, grapes...etc)

For coughs doctor usually prescribes Sinecod Syrup.

Re: Advice on BMT
« Reply #11 on: March 04, 2019, 06:34:53 PM »
today is day plus 68.. we sometimes give him uncooked banana as well as yogurt.. we will be more careful in future.. his cough is better now.. should we check CBC blood test weekly basis or after two weeks..

Re: Advice on BMT
« Reply #12 on: June 12, 2019, 05:56:55 AM »
Fahed we need your guidance now.. Unfortunately the BMT of my 2 year old son which was performed at The Aga Khan University Hospital Karachi was unsuccessful. Donor was my 10 year old daughter who is 100% HLA match.. Transplant was performed on December 2018 and it is now 6 months post BMT.. Last week his hemoglobin dropped to 6.5 and he requires blood transfusion and Donor Chimerism shows only 21% donor cells.. you used the cord blood from your child or was it arranged by hospital..

Re: Advice on BMT
« Reply #13 on: June 13, 2019, 06:02:27 AM »
Dear Kaleem,

I am sorry to hear about your son's current situation.

For my son we were saving the matched sibling cord blood, so they used both the saved cord blood as well as bone marrow extracted from the matched sibling.

Re: Advice on BMT
« Reply #14 on: June 13, 2019, 02:15:12 PM »
Thanks for your kind reply.. Is it possible to know how much was the cost of treatment.. In our case we might use Bone Marrow of our elder daughter again who is a 10/10 HLA match..

 

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