Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Fahed_FN on December 29, 2017, 03:10:47 PM

Title: Advice on BMT
Post by: Fahed_FN 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.
Title: Re: Advice on BMT
Post by: Fahed_FN on January 18, 2018, 12:36:43 PM
Hi Friends,

Any suggestions please?
Title: Re: Advice on BMT
Post by: zahra 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
Title: Re: Advice on BMT
Post by: Andy Battaglia 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/
Title: Re: Advice on BMT
Post by: EugenioLaMesa 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/ (http://www.curethalassemia.org/faq/)
Title: Re: Advice on BMT
Post by: Fahed_FN 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.
Title: Re: Advice on BMT
Post by: Fahed_FN 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.
Title: Re: Advice on BMT
Post by: Andy Battaglia on February 16, 2019, 10:31:58 PM
Please continue to update us on his progress.
Title: Re: Advice on BMT
Post by: kaleem 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 ..
Title: Re: Advice on BMT
Post by: kaleem 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..
Title: Re: Advice on BMT
Post by: Fahed_FN 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.
Title: Re: Advice on BMT
Post by: kaleem 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..
Title: Re: Advice on BMT
Post by: kaleem 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..
Title: Re: Advice on BMT
Post by: Fahed_FN 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.
Title: Re: Advice on BMT
Post by: kaleem 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..
Title: Re: Advice on BMT
Post by: Fahed_FN on June 17, 2019, 04:46:15 AM
Dear Kaleem,

The total cost should be somewhere between 30,000 and 40,000 US Dollars for both the donor and receiver, it depends on many factors but this is what i generally paid .

Hospital should give you a better estimate.
Title: Re: Advice on BMT
Post by: Andy Battaglia on June 17, 2019, 11:04:04 PM
Kaleem,

In rare cases, patients with a donor chimerism as low as 10% have become transfusion free after BMT. While you decide on a second BMT, continue to observe the Hb and the mixed chimerism %. It seems that achieving a stable mixed chimerism rate is one of the keys to success in BMT.
Title: Re: Advice on BMT
Post by: kaleem on June 19, 2019, 12:08:54 PM
Dear Andy.. thank you so much for your encouraging remarks.. Last week his new chimerism report shows 33% which was better than one month ago when it was 21%..

So far he received two blood transfusions and HB is declining again and it was 8.9 yesterday and seems like need blood transfusion again.. Is it still possible that he could become Transfusion Free in coming months?
Title: Re: Advice on BMT
Post by: kaleem on June 19, 2019, 12:57:10 PM
Dear Fahed..

Thank you so much for your kind reply.. and how long you stayed in India?
Title: Re: Advice on BMT
Post by: Fahed_FN on June 19, 2019, 05:52:32 PM
Dear Kaleem,

As you know, each case is different.

In our case, we stayed around 2 months in total.
Title: Re: Advice on BMT
Post by: Andy Battaglia on June 22, 2019, 09:08:05 PM
Kaleem,

It's hard to predict, but the Hb could still improve. In my opinion, a second BMT should only be done after the patient has completely recovered from the first BMT, so I feel you do have some time to observe before making a decision on another BMT. Also, please be aware that the odds of success are lower with a second BMT.
Title: Re: Advice on BMT
Post by: kaleem on June 23, 2019, 07:20:05 PM
last monday his hemoglobin was 8.9 and since then we stopped Cyclosporine and this saturday his hemoglobin increased to 9.7.. yes we are again desperately  expecting that it may work.. however since decreasing and then stopping cyclosprine brought some improvement in donor chimerism and hemoglobin as well but he lost his appetite and hardly taking any food.. otherwise fine.. we read an article by a Turkish doctor regarding withdrawal of cyclosporine and its affect on increasing hemoglobin as well as donor cells chimerism https://www.nature.com/articles/1705432
Title: Re: Advice on BMT
Post by: kaleem on June 26, 2019, 05:19:45 PM
hemoglobin dropped again to 7.9..  despite stopping cyclosporine