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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55105 Posts in 5866 Topics by 6148 Members
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This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: unrelated cord blood transplant  (Read 26089 times)
Madhavi
Mohanish....a divine blessing!
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« Reply #30 on: September 06, 2011, 01:38:54 AM »

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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Love and luck to all...
joyce
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with my baby jovy..


« Reply #31 on: December 29, 2011, 08:36:45 PM »

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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Prets
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« Reply #32 on: December 30, 2011, 05:08:42 AM »

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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Symptomatic Beta Thal Minor.
aabha
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« Reply #33 on: January 02, 2012, 07:35:52 AM »

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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Dori
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« Reply #34 on: January 05, 2012, 03:56:26 PM »

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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aabha
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« Reply #35 on: January 05, 2012, 11:53:16 PM »

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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Dori
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« Reply #36 on: January 08, 2012, 06:59:18 AM »

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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aabha
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« Reply #37 on: January 09, 2012, 12:14:12 AM »

dear dori
it's perfectly all right .....I hope your friends get well soon,my best wishes are with them.
please take care of yourself
love aabha
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joyce
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« Reply #38 on: January 14, 2012, 09:04:54 PM »

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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Dori
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« Reply #39 on: January 15, 2012, 03:46:52 AM »

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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aabha
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« Reply #40 on: January 16, 2012, 01:48:50 AM »

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 ...but from that point the doctor can atleast tell you that the transplant is a success!!
Aabha
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joyce
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« Reply #41 on: January 18, 2012, 08:05:54 AM »

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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gwftan
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« Reply #42 on: January 18, 2012, 08:36:10 PM »

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
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with my baby jovy..


« Reply #43 on: January 20, 2012, 09:46:00 AM »

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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aabha
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« Reply #44 on: January 20, 2012, 11:31:49 AM »

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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