Haploidentical transplant

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Re: Haploidentical transplant
« Reply #15 on: March 09, 2016, 01:34:59 AM »
Hello Andy,

I signed the petition a few days ago. My son was diagnosed with beta thalassemia major since he was 8 months old. He is now 3 1/2 years old. Apart from regular transfusions and chelation, my wife and I have never stopped working towards getting him cured.  We decided to have another child with the hope that a match would result.  Prenatal testing at 12 weeks showed the baby did not have thalassemia major nor the trait. We contacted cryocell to also save the cord blood and tissue. This was successfully done. Both mother and baby girl are fine. However,  the hla test came back with bad news. They did not match. We wanted to conduct a unrelated donor search, but the cost to do that is very high. Also my ancestors are from India but my wife family on her mother's side are indigenous to the Caribbean  (Trinidad and Tobago ). Our hematologist said that it may be difficult to get a unrelated match and the process can take very long to complete. We were told that a haploidentical mother to child bmt procedure is an option and of course Dr. Sodani would be the one to oversee /do it. We want to do it but in light of the current situation at IME we are not sure if Dr. Sodani and his team are in a position to do so. Before we decided to try for our second child I did have a couple of email conversations with Dr.  Sodani....FYI.  I  decided to post this because I know that all parents out there would want a chance to cure their child and I myself would like to know what is my next step. Should I contact Dr.  Sodani like before or professor lucarli. Not sure what to do.

Kind regards,
Alicia and Shastri.

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Offline Bostonian_04

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Re: Haploidentical transplant
« Reply #16 on: March 09, 2016, 09:53:42 PM »
There are quite a few treatment options that will be available in the near future that may offer cure or reduced transfusion with much lower risk. so in my opinion, not going for haploidentical transplant is the best approach now unless your child is not able to take regular transfusion and chelation for certain health reasons.
I would keep up with regular transfusion and chelation and be in the best possible health to avail the benefits of the new treatments that will be available soon.
Quis custodiet ipsos custodes ? - Plato

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Offline Andy Battaglia

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Re: Haploidentical transplant
« Reply #17 on: March 09, 2016, 10:23:58 PM »
For more information to help you make a choice, email info@curethalassemia.org
Andy

All we are saying is give thals a chance.

Re: Haploidentical transplant
« Reply #18 on: March 10, 2016, 12:25:21 AM »
Noted. Thank you for your kind words and advice.

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Offline zahra

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Re: Haploidentical transplant
« Reply #19 on: December 25, 2016, 04:27:35 PM »
Hi Everybody,
My son has started chemo for his haploidentical transplant from his brother at Johns Hopkins on the 29th, inshallah.  Keep us in your prayers.
Zahra

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Offline Andy Battaglia

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Re: Haploidentical transplant
« Reply #20 on: December 26, 2016, 11:44:44 PM »
Zahra,

Best wishes with the transplant.
Andy

All we are saying is give thals a chance.

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Offline Dori

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Re: Haploidentical transplant
« Reply #21 on: December 31, 2016, 10:24:22 AM »
Best wishes with the transplant.

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Offline MC

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Re: Haploidentical transplant
« Reply #22 on: January 04, 2017, 03:26:10 AM »
Hi everyone,

On my recent  trip to the US asked for a repeat search for a match for my son. The doctor  told me about the good success  rate (70%) of haploidentical  (half matched) transplant  now.This means all parents and most siblings can be a match. They are using  reduced intensity conditioning so side effects  like infertility  are  minimized. They are hopeful to increase success rate to 90 % by adding low dose radiation  to the  conditioning. Of the 35 patients  at this centre two have mild skin GVHD which requires  only topical treatment and one had a more severe but still  treatable GVHD. This doctor didn't  favor cord blood though he has previously  done many b/c if it doesn't  engraft you can't get more and because  it's not reduced intensity  conditioning  you've  already wiped out the patients  bone marrow. Because of  RIC in their haploidentical  procedure if the new marrow doesn't  engraft the old one grows back (so patient survives albeit with thal major) because  the  donor is an adult relative ( usually ) you  can  always  get more donated marrow if needed.
He said gene therapy so far is also using high intensity  conditioning so has same problems  except chances of GVHD are nil.
What do you think?
Zahra

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Offline MC

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Re: Haploidentical transplant
« Reply #23 on: January 04, 2017, 03:28:38 AM »
hi MC,

I am agreed with doctors, blood transfusion is best option rather going for BMT if not fully matched. I was also explored this in past but now convinced with blood transfusion.

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Offline zahra

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Re: Haploidentical transplant
« Reply #24 on: March 08, 2017, 03:09:19 PM »
Hi Everyone,
We are home from the hospital for a week now and approximately day 70 after the transplant. Should have been home alot earlier but my son got a fever that couldn't be diagnosed.  Thank God it finally went on its own.
Chimerism results are good so far showing 100%donor cells. Not final yet.
Johns Hopkins has now done 6 haplo transplants for thalassemia  ( much more for other diseases). 5 have been successful.
Keep us in your prayers.
Zahra

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Offline Andy Battaglia

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Re: Haploidentical transplant
« Reply #25 on: March 10, 2017, 01:15:41 AM »
That's good news, Zahra. I'm happy he's back home.
Andy

All we are saying is give thals a chance.

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Offline BabyRiya

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Re: Haploidentical transplant
« Reply #26 on: March 14, 2017, 02:23:21 AM »
Friends
My daughter has had 6 transfusion already since last one year and she will be two in couple of weeks.
We started hydrauxia since last month and doctors are saying it could take 6 months to see the effect.

I do nt want to consider BMT  but reading scary posts of hearing loss and short lifespan liver issues, I am worried. I have older son it I have not considered a Hal match
Cause if it's a match, I may consider BMT as an option even if I am not for it.
I am so confused.  Would you guys advise doing a hla match irrespective of I consider or not?

Also where did zahara did the BMT. Is it John Hopkins in Baltimore?
Is there any easy way to contact dr Sodani?

Thank you friends.  Thank you Andy

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Offline Andy Battaglia

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Re: Haploidentical transplant
« Reply #27 on: March 18, 2017, 12:19:30 AM »
Yes, I believe Zahra had it done at Johns Hopkins. I do not believe Dr Sodani currently has a place to practice. You can try emailing info@curethalassemia.org to see if you can contact Dr Sodani.

I would advise against rushing into a decision on BMT until you've talked to more people whose children have gone through it. I would also suggest keeping your eye on the Luspatercept trial to see if it looks like it will be a viable alternative to transfusion. A child who has only transfused 6 times by age 2 would benefit greatly from this drug, based on phase 2 trial results.
Andy

All we are saying is give thals a chance.

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Offline zahra

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Re: Haploidentical transplant
« Reply #28 on: March 24, 2017, 11:08:22 PM »
Hi Sharmin,
I was talking to my son's transplant doctor today and he mentioned that because of reduced intensity conditioning it is possible to do haploidentical transplants for older patients ( depending on how thalassemia has affected their health otherwise) . Your question about your son immediately popped into my head so I tried to get an outside limit. He said they handle patients upto 23-24 in the pediatric section. Adult hematology could handle older.
Regards,
Zahra Syyida

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Offline zahra

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Re: Haploidentical transplant
« Reply #29 on: March 24, 2017, 11:15:31 PM »
Hi Baby Riya,
Yes my son had his transplant at Johns Hopkins in Baltimore, Maryland.  His main doctor is Dr Kenneth Cooke.  You can email  him at Kcooke5@jhmi.edu for any further questions about the procedure. He said he would be happy to provide answers.
Regards,
Zahra

 

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