Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: aabha on June 20, 2011, 02:36:45 PM
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Dear Andy
am writing after a long time but with great news!! my son,who is 1yr 9mnths now has been cured by unrelated 4/6 cord blood match.we had the transplant in taiwan.it was performed by dr.Jaing,who is one of the best in this field.
I thank you for your guidance and help early on when i really needed support.
thankyou thalpal
if anyone needs any information on unrelated cord blood transplant i will be only too glad to help
ever grateful
warm regards
aabha
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That indeed is excellent news and a nice way to start the week. I am happy we have been of some help here and very happy for your son. This is wonderful. :biggrin
The expertise of the doctors doing BMT has grown greatly in recent years, making it a much safer procedure with better results. It is becoming an option for many and should be considered if the circumstances are right. The entrance of www.curethalassemia.org onto the scene will be another major step in curing thals.
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Aabha,
What wonderful news! I am so happy that your child has been cured! It is so great to see options opening up for people who only a few years ago would not have had the option - unrelated and less than perfectly matched cord blood utilized to cure thalassemia shows the progress that has been made in recent years and should give everyone hope for a brighter future!
Once again Aabha, thank you for sharing the wonderful news. I am sure many will have questions for you regarding this procedure.
:hugfriend,
Sharmin
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That is wonderful news....could the same be done for older patients and how risky would this be?
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There is now a resource for answering your questions about BMT. Please go to this link http://www.curethalassemia.org/contact/ and email Dr Sodani. He will answer your questions. Dr Sodani is one of the world's top BMT specialists and is offering to answer questions through the new www.curethalassemia.org website. This organization is going to do big things for thals and I am recommending anyone with questions or in need of assistance contact them.
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Dear Sharmin
thanks a lot
I will be delighted to answer questions to the best of my ability.Dr.Jaing is indeed doing good work
regards
aabha
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Dear Emby
Dr.Jaing has successfully treated children upto the age of 14yrs with unrelated mismatch cord blood.he has treated more than 80 cases of thal withcord blood.
hope it works for you
regards
aabha
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I am so happy for you,Aabha!
Congratulations and all the best for a great future for your family.
A fantastic bit of news indeed!
Lots of love,
Madhavi
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Thanks a lot,Madhavi.God has been very kind.
your support and posts about dear Mohnish have been a source of inspiration.
warm regards
aabha
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Dear aabha
Many many congratulation well can u plz guide how much it cost to u in US dollar cause iam also searching for a place for bmt for my daughter
Adeel
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Dear Andy..I am a little curious to know that there are two members on the 'ABOUT' page on the link you suggested who have healthy family members with Thal. Why have they not gone for this treatment?...perhaps it is to do with age :(.
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Dear Adeel
The total expenditure incurred including cost of cord blood is about $35,000.I am sure you understand that this is not a bone marrow transplant(BMT) but a unrelated cord blood transplant(UCBT).
please feel free to ask any query you may have
regards
aabha
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I was told last week that we must not see a familair and unrelated (both 100%) donor as two seperates things. We should not think into these groups anymore.. I assume this is true but it is a big task to let me brains really think without "this banner".
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Can you please tell us how you started this procedure? We were thinking of this procedure at Duke University in the US but they are predictinga cost of one million dollars plus? Before the process initiates we have been told to get a high resolution HLA typing done but that isnt available in the UAE. Do you know where or how it could be done? Maybe we can courier blood sample to th eplace you had it done. your information in invaluable.
Zahra
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Zahra,
It would be worth checking with Dr Sodani. He is taking questions at the new website, http://www.curethalassemia.org/faq/
This is a valuable resource and I hope people will take advantage of this opportunity.
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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
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'cure thalassemia' is opening a BMT center in india and pakistan right?
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That is right I think. Does they not exist already?
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dear abbha ,
i'm very happy for your son , can u tell me which hospital u do the UCB ?
thx before
best regards,
dciky
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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
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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 :smiley
if you need any other info. please ask
love
aabha
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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
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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
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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
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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
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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
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Dear Z ahra
were you able to get a high resolution typing done?hope you found a match too.all the best
love
aabha
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Great to know you are back home!
All the best for this wonderful life!
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Thanks a lot ,Madhavi!
Jai still has a 'Handle with care'tag attached to him :smiley.How is Mohnish doing?my love to both your kids
aabha
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You guys are so brave,hats off to you,i wish i had the courage to even think about it.
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Aabha,
Thank you for the love...and I am so happy for you!
And Zaini, you are strong in your own way!!!!!!!!
Madhavi
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Aabha... what a wonderful news!
You do it with your own financial resource? how much is the total cost you use for these treatment?
im sure i can't afford it but just want to now if i can work on it. we use Ringgit Malaysia MYR here.
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Dear Aabha,
Could you give us an idea of the procedure involved in UCBT? From what I've heard, its a simpler procedure and does not require chemotherapy. Is that right? How long did the entire process take? How is the transfer made? What about side effects?
Thanks.
:-)
quote author=aabha link=topic=4050.msg40372#msg40372 date=1308667187]
Dear Adeel
The total expenditure incurred including cost of cord blood is about $35,000.I am sure you understand that this is not a bone marrow transplant(BMT) but a unrelated cord blood transplant(UCBT).
please feel free to ask any query you may have
regards
aabha
[/quote]
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Happy New Year
Joyce,we managed the finance with a lot of family support and we also sold an apartment we had.I am sure you too can manage the money as another malaysian raised the money through blogging .you can check her out at..mitsuki's thalassemia medical fund.the total cost at the hospital was Rs.23,00,000.we also paid Rs.12,00000 for procuring the cord blood from NMDP through stemcyte.
Pretty,Dr.Jaing makes the procedure look simple!!it does involve chemotherapy.the cord blood transplant is like a blood transfusion and takes an hour.
our total stay in the hospital was 77 days,from 31st march to 15th june.GVHD is seen after the transplant,with cord blood it is mostly skin GVHD.everything is managed very well by Dr.Jaing and his team.my son too had grade 3 gvhd....it was like rashes on his abdomen.
hope i have been able to give a satisfactory reply.feel free to ask anything you might want to know,it is a pleasure to share information.
best wishes
aabha
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How come this does NOT require chemotherapy? What is the pre transplant traject???
Is yiur son gvh free now?
Kind regards, -D
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Dear Dori
The transplant DOES involve chemotherapy,that is what i wrote earlier too.my son underwent 9 days of chemo as preparation for the transplant.
He has mild gvhd on his palms and soles of his feet,a little redness,his abdomen and rest of the body is free from any rash or redness.
aabha
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i do not know how come I read that wrong. It might be come due all the stress I had and have, my apologies. Thank you for sharing. Three out of four friend who underwent a transplant are still in recovery mode.Two has still almost zero white cells and wears a mask all the time, another is still busy with rehab therapy and the last is living life again but has a low white blood count and is only 65% donor. 3 were unrelated donors and one of them is the one who is doing well.
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dear dori
it's perfectly all right :smiley.....I hope your friends get well soon,my best wishes are with them.
please take care of yourself
love aabha
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You guys are so brave,hats off to you,i wish i had the courage to even think about it.
zAINI..... im thinking of doing it for my both son.
maybe i'll do the blogging to raised a fund, coz i can't afford it.
I hope, people will come forward and contribute as well.
Im still waiting for Dr Jaing's reply.
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i see again a mistake: only one of two with white cells problems wears a mask. the other is back in public life but very carefully. The latest who had a transplant has been told at day +12 that she's cured and by day +20 this has been confirmed again. Which suprise me a lot as I thought they would not say these words before +356 days after transplant...?
Joyce, keep us up to date.
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Dear Dori
What they probably mean is that the stem cells have engrafted..which is indicated by the ANC count above 500.this is the stage where the wbc count starts to rise
this takes place anywhere between 12 to 25 days of transplant.my sons cord blood engrafted at day 23 of the transplant..an agonising wait :smiley...but from that point the doctor can atleast tell you that the transplant is a success!!
Aabha
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Ya Dori.... Im started thinking about this month ago, since I read Aabha post and also another Malaysian parents that doing the bloggging to support the medical expenses. For the started i will sell my car and after that maybe started the medical fund. Hopely I can have people to contribute then.
Aabha, they had called me today but they don't tell me the detail on the HLA typing. Did you went to Taiwan just to have the HLA Typing and DNA done or just send it by courier? Please advise.
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Joyce,
I wish you all the best here... Need any help, let me know. We're not that far here :)
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Joyce,
I wish you all the best here... Need any help, let me know. We're not that far here :)
Thanks gwftan..
We already arrange the date for our first appointment with Dr Jaing. He told us that estimate cost for the first visit will be +/- 13k for both of them, excluding the hotel and transportation.
Hmmm..... maybe can work on it but the real medical expenses is what disturbing me.. have to work hard on it.:)
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Joyce
I am very happy that you have taken the first big step!!God willing everything will work out fine.
we will be in Taiwan on 10th feb.....when is your appointment?
All the very best
aabha
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Hi Joyce,
I do not know iif your a member of the Sabah Thalassaemia Assc, however I am pretty sure Sarawak Thal Assc provides free or subsidized HLA matching.
Regards,
Philip
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Hi PhilipC...
I'm afraid i haven't registered for the Sabah Thallasemia Assoc but I do member of Keningau Thalasemia Society (town).
Are you from Sarawak?:)
We'll go to Chang Gung Memorial Hospt on this coming March 28.3. 2012 -31. 3. 2012.
I'm so excited behalf of my kids :) Hopely all will work out fine there..
Pray for us.
Thanks all !
Joyce.
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All The Best...... :thumbsup
aabha
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All the best to you too, Joyce...
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Hi Joyce,
Yes I am from Sarawak, kuching.
Swak thal acc sends blood samples to Singapore to do HLA testing and matching.
Good Luck in Taiwan! if you have any enquiries do not hesitate to drop me a message.
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Thanks for all the support i get here.
Thanks Aabha & gwftan..
Sure, will ask you for more Philip. Thank you for sharing!
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'cure thalassemia' is opening a BMT center in india and pakistan right?
We have an agreement with the Narayana Hrudayalaya and the Mazumdar Shaw Cancer Centre in Bangalore, India:
http://www.curethalassemia.org/narayana-bmt-unit/ (http://www.curethalassemia.org/narayana-bmt-unit/)
So far there are no plans for Pakistan.