Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Andy Battaglia on October 09, 2011, 07:10:30 PM



Title: Matchview-View Potential Matches for Your HLA Type
Post by: Andy Battaglia on October 09, 2011, 07:10:30 PM
If you have the HLA information. you can enter it on this page to look for potential matches.
http://www.marrow.org/Patient/Transplant_Process/Search_Process/View_Potential_Matches/View_Potential_Matches.aspx


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: zahra on February 12, 2012, 08:52:33 AM
Will a low resolution HLA typing work or does it have to be the high resolution ?
Zahra


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: JV on March 16, 2012, 02:14:47 PM
Hi...My wife and daughter, who is 19 months old and has thal major, met with Doctors at Sloan Kettering in New York. One of the Doctors there, Dr. Baulard, said that he would only do the Bone marrow transplant if a sibling was a match or me or my wife. So far we have been unable to have another child through IVF and neither me nor my wife are matches to our daughter. What now? Many of the top transplant centers wont do the transplant with an unrelated donor so we are in a difficult situation. Any advice would be great.

James


Title: Re: unrelated BMT centers
Post by: EugenioLaMesa on March 19, 2012, 11:47:59 AM
Hi...My wife and daughter, who is 19 months old and has thal major, met with Doctors at Sloan Kettering in New York. One of the Doctors there, Dr. Baulard, said that he would only do the Bone marrow transplant if a sibling was a match or me or my wife. So far we have been unable to have another child through IVF and neither me nor my wife are matches to our daughter. What now? Many of the top transplant centers wont do the transplant with an unrelated donor so we are in a difficult situation. Any advice would be great.

James

James, some BMT centers have a specific specialization with unrelated BMT.
Try to contact this hospital in Pittsburgh:
http://www.chp.edu/CHP/bmt
and this one in San Francisco:
http://www.childrenshospitaloakland.org/healthcare/depts/bmt_overview.asp

Another option is to go to India, if you want I can give you some information.

Please notice that you could also do a BMT using the mother as the donor, even if she doesn't match (the results are lower compared to a matched donor).

Did you already find the unrelated donor, or you have to start the search in a bone marrow donor bank?


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: Andy Battaglia on March 19, 2012, 12:39:14 PM
Eugenio,

Your response mentions mother to child BMT. I have posted a question about this at http://www.thalassemiapatientsandfriends.com/index.php/topic,500.0.html

Can we get an update on Dr Sodani's work in this area?


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: JV on March 20, 2012, 11:05:09 AM
Eugenio,

We have done a search but the best we were told was a 9/10 match and the Doctors we spoke with were not confortable with that. At this time we are waiting and leaning towards not doing an unrelated transplant due to the lower success rate.

As Andy stated, has there been any new developments in the field of mother donor BMT? Although we probably wont do it we are still interested in hearing about it.

Right now our faith is in new developments with drugs from Hemaquest and LentiGlobin from Blu Bird Bio. We have been unsuccessfull with having a savior sibling through IVF, which doesnt make sense due to the fact we can concieve naturally.

James


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: EugenioLaMesa on April 04, 2012, 11:40:28 AM
James,


1) for the succes rate of unrelated BMT, I paste you the appropriate FAQ of our site:
http://www.curethalassemia.org/faq/ (http://www.curethalassemia.org/faq/)
It is better to use as donor an HLA-matched sibling (brother or sister),or an unrelated donor from a bank?
For class 1 and class 2 patients,if the HLA match is 6/6 both for the matched sibling and for the unrelated donor,the results of the BMT are the same;for class 3 we use the sibling.
If it is 5/6 for both,we use the sibling.
If the sibling is 5/6 and the unrelated donor is 6/6,we use the unrelated donor.

and the scientific paper published on November 2005
NY Academy of science:Unrelated bone marrow transplantation for beta-thalassemia patients:The experience of the Italian Bone Marrow Transplant Group
http://www.ncbi.nlm.nih.gov/pubmed/16339665 (http://www.ncbi.nlm.nih.gov/pubmed/16339665)

2) for mother to child (haploidentical BMT from mother) we have just written a detailed update here:
http://www.thalassemiapatientsandfriends.com/index.php/topic,500.0.html

Eugenio


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: Shaheera on June 29, 2012, 09:40:02 AM
Hi Andy,

I have only one baby girl, she is one year old with thalassemia major. We all have done HLA Typing. I have mentioned below the results. What does your experience say about this? My age is 35 and my wife is 30. Thank you

1. HLA Typing For My Daughter.

HLA-A 01-31
HLA-B 18-51
HLA-C 07-15

HLA-DRB1 11-15
HLA-DQB1 03-06

2. HLA Typing For My Wife.

HLA-A 01-31
HLA-B 18-51
HLA-C 07-15

HLA-DRB1 11-15
HLA-DQB1 03-06

3. HLA Typing For Me.

HLA-A 01-01
HLA-B 51-57
HLA-C 06-15

HLA-DRB1 07-15
HLA-DQB1 03-06


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: Andy Battaglia on June 29, 2012, 11:09:00 AM
This will be better answered by Eugenio or Dr Sodani, as this is not a field of expertise for me.


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: Shaheera on June 29, 2012, 12:03:35 PM
Thank you Andy. I have sent e mail to Eugenio.


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: EugenioLaMesa on June 30, 2012, 01:07:28 AM
Hi,

I've received your email and I've forwarded it Dr. Sodani, who will reply to you privately:
http://www.curethalassemia.org/free-advice-on-bmt/

If you have any other question, feel free to ask.




Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: Shaheera on June 30, 2012, 05:32:09 AM
Thank you Sir.


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: sanjuna on September 14, 2017, 12:33:47 PM
Hello sir, my son is 1 yr 9 months old, he started taking blood from 6 month age, now doctor is advising for but, he got unrelated match. 10/10, both mine and wife has matching 5/10. I am afraid since he is very young and I was hearing it is risky also, I need your advise what I need do now.    I have seen notes that  there advance treatment been invented Gene therapy it is less risky treatment,  not sure it is  applicable for beta thalassemia or not, if it cures beta thalassemia, I like to know about facility, need your should I go but or can look gene therapy.


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: Andy Battaglia on September 14, 2017, 06:15:07 PM
Sanjuna,

A 10/10 unrelated match is good, similar to a 5/6 related match in results, but I have a difficult time recommending BMT in India. Perhaps Dr Sodani can tell you more about the Indian centers and if there are any he would trust. He can be reached at the link provided above by Eugenio,  http://www.curethalassemia.org/free-advice-on-bmt/


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: sanjuna on September 15, 2017, 12:23:36 PM
Thanks Andy, i am hearing about gene therapy,  is this cure.thal major, I like to know can I wait till time, since I heard  it eliminate risk of ghvd and less risky compared to But.


Title: Re: Matchview-View Potential Matches for Your HLA Type
Post by: Andy Battaglia on September 23, 2017, 01:56:38 PM
Yes, gene therapy does require chemotherapy conditioning like BMT, but there is no possibility of GVHD and is much less risky than BMT.