should thal intermedia go for bone marrow transplant

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Offline asma

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should thal intermedia go for bone marrow transplant
« on: June 07, 2013, 07:52:44 PM »
Hi everyone
My daughter is 2 yrs 4 months and is thal intermedia . She has
Just be put on hydroxyurea and folic acid plus lots of vitamins.
She is currently doing fine. We have yet to find out the effects
Of HU on her hb which is 7.4 right now.

But my question is should we be thinking of BMT . We want to
Make this decision before time runs out on us and it becomes
Too risky for her. Plz tell us the pros and cons of it.

Thanks

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Offline Andy Battaglia

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Re: should thal intermedia go for bone marrow transplant
« Reply #1 on: June 08, 2013, 12:41:49 AM »
We have a special moderator for questions about BMT, so I have moved this post here.
Our partners at curethalassemia.org have a wonderful site with a very good FAQ section, http://www.curethalassemia.org/faq/

I do not believe that they will do a BMT unless the patient is transfusion dependent. This raises some questions I can't answer, so I will address Eugenio.

Eugenio, I have seen many thal intermedia patients eventually reach the point where they require regular transfusions, but the longer they wait, the older they get and may not be the same class for the BMT as they would have been when younger. What does your organization advise parents when the intermedia child is still young, but with an Hb low enough to suggest transfusion will some day be required? Hydroxyurea may help keep Hb up, but may not be a long term solution. Are BMT's ever performed on intermedia patients?

Andy

All we are saying is give thals a chance.

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Offline EugenioLaMesa

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Re: should thal intermedia go for bone marrow transplant
« Reply #2 on: June 12, 2013, 09:28:20 AM »
Andy,

I'll ask to Pietro Sodani and I'll let you know, probably next week because today we will start our trip to India.

Regards,
Eugenio
Eugenio La Mesa
Co-founder and Chairman
Cure Thalassemia
Live without Thalassemia major - No more transfusions
Become our fan on Facebook: http://fb.com/CureThalassemia

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Offline EugenioLaMesa

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    • Cure Thalassemia - Life without Thalassemia major No more transfusions
Re: should thal intermedia go for bone marrow transplant
« Reply #3 on: June 20, 2013, 06:09:22 AM »
Andy,

I've talked to Pietro, and this what he says:
"from a clinical point of view, If thalassemia intermedia patient needs trasfusion, is like thalassemia major, so, again, we have to think about bone marrow transplant.in other case, idrossiurea can help to increase fetal hb , not to be cured."

Let me know if this is enough or if you need other information.

Eugenio
Eugenio La Mesa
Co-founder and Chairman
Cure Thalassemia
Live without Thalassemia major - No more transfusions
Become our fan on Facebook: http://fb.com/CureThalassemia

 

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