unrelated cord blood transplant

Thank you Andy. I have written to him and have received acknowledgement that he has got my questions. Waiting for a reply now.

Zahra


Sharmin is it difficult to get an appointment with Dr Vichinsky? I will be in the US for about a month. Do you think it will be possible to get an appointment at short notice? I think maybe he could be a good guide. I have seen your posts appreciating his advice.

Zahra

'cure thalassemia' is opening a BMT center in india and pakistan right?
 
 

That is right I think. Does they not exist already?

dear abbha ,

i'm very happy for your son , can u tell me which hospital u do the UCB ?

thx before

best regards,

dciky

Dear Indonesian_Thals
sorry for a late reply.....we had the transplant done at the Chang Gung Memorial Children's Hospital,Linkou,Taiwan
Dr.Jaing is my son's doctor
love
aabha

Dear Zahra
we too had approached duke university earlier but the cost was beyond our means.
we started the search for a cord blood match through stemcyte,india.We gave them my son's blood sample on a tissue paper which was couriered to the U.S. for high resolution typing.we had the report in a week.Stemcyte then searched in their inventory and found a match(within an hour).we mailed the result to Dr.Jaing who called us to Taiwan for a  meeting and consented to do the transplant
if you need any other info.  please ask
love
aabha

Aabha,

Thank you so much for your guidance.  Can you also tell me the name of the lab where you got high resolution HLA typing done in the USA and how much it cost? I am in the US now for a few weeks and would like t o get this done so I can talk to doctors here about it.

Also is there a way to get in touch with Dr Jiang?

Regards,

Zahra

Dear Aabha,

How  long did you have to stay in Taiwan?

How severe was the conditioning regime?

Also how long was the risky time when immunity is low?

What is the success rate at this hospital?

Thank you for taking the time to answer so many questions.

Regards

Zahra

Dear Zahra
I am glad ou are looking at corb blood transplant as an option so it is a pleasure to answer your questions
1)high resolution testing was done at
Stemcyte
1589 West Industrial Park street
Covina,CA 91722
626-646-2457
2)Dr.Jaing's e mail is     jaing001@cgmh.org.tw
3)I am still in taiwan,came on 29th march.will stay for another month as we have to go for follow up every fortnight now
4)I will be unable to comment on the severity of the conditioning regimen but i think you are concerned about the discomfort to the child.it was my over riding concern too.my son ,by the grace of God,had low grade fever for one day only and vomitted once,the day ATG was introduced.
5)The immunity was very low till 23 days after the transplant when the anc rose to >500.immunity is still low as he is having cyclosporin which is an immunosuprresant though is wbc count is in the normal range
6)Dr.Jaing's success rate for thallassemia is 94%.he has done more than 50 ucbts for thal and all are transfusion independent.
if you need more info feel free to ask
love
aabha

Dear Aabha,
How is your son doing now? I hope he is well and now that a month is over you have been allowed to head home.
Zahra

Dear Zahra
We are back in India..it is nice to be home.My son is doing well,by the grace of Almighty.He is on oral medication which will continue for sometime.thanks a lot for your concern
love
aabha

Dear Z ahra
were you able to get a high resolution typing done?hope you found a match too.all the best
love
aabha

Great to know you are back home!
All the best for this wonderful life!

Thanks a lot ,Madhavi!
Jai still has a 'Handle with care'tag attached to him .How is Mohnish doing?my love to both your kids
aabha

You guys are so brave,hats off to you,i wish i had the courage to even think about it.