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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2018





55001 Posts in 5847 Topics by 6100 Members
Latest Member: faithxalways

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: Advice on BMT  (Read 2974 times)
Fahed_FN
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« on: December 29, 2017, 09:10:47 AM »

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.
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Fahed_FN
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« Reply #1 on: January 18, 2018, 06:36:43 AM »

Hi Friends,

Any suggestions please?
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zahra
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« Reply #2 on: January 22, 2018, 11:15:21 PM »

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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Andy Battaglia
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« Reply #3 on: January 23, 2018, 08:37:53 PM »

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/
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Andy

All we are saying is give thals a chance.
EugenioLaMesa
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« Reply #4 on: January 25, 2018, 02:47:51 AM »

I also suggest to read all the FAQ written by Dr. Sodani:
http://www.curethalassemia.org/faq/
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Eugenio La Mesa
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Fahed_FN
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« Reply #5 on: January 27, 2018, 01:55:36 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.
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Fahed_FN
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« Reply #6 on: February 12, 2019, 10:00:19 PM »

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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Andy Battaglia
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« Reply #7 on: February 16, 2019, 04:31:58 PM »

Please continue to update us on his progress.
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Andy

All we are saying is give thals a chance.
kaleem
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« Reply #8 on: February 19, 2019, 02:15:11 PM »

so happy to know this great news.. now only few months away to complete one year milestone.. good wishes ..
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kaleem
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« Reply #9 on: February 20, 2019, 11:47:09 PM »

can you also update about the diet which your doctor recommend.. my son got a cough and its taking longer to heal..
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Fahed_FN
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« Reply #10 on: March 03, 2019, 10:03:07 PM »

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.
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kaleem
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« Reply #11 on: March 04, 2019, 12:34:53 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..
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