Unrelated Bone Marrow Transplant.

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Offline omega

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Unrelated Bone Marrow Transplant.
« on: May 11, 2006, 05:31:04 AM »
My 7 years old daughter is a thalassemia intermidiate. She is transfusion dependent since 2004. She is undergoing a unrelated bone marrow transplant now and it's day 30 tomorrow. She is lucky to have mild GVH and reacting well to the drugs used in the transplant process. We are expected to be discharged on 15th May 2006.

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Offline §ãJ¡Ð ساجد

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Re: Unrelated Bone Marrow Transplant.
« Reply #1 on: May 11, 2006, 12:35:46 PM »
Hi Omega!,

Wishing your daughter a fast recovery. :getwell
اَسّلامُ علیکم Peace be Upon you
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Offline Andy Battaglia

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Re: Unrelated Bone Marrow Transplant.
« Reply #2 on: May 17, 2006, 11:44:03 AM »
Hi,
Where was the transplant done?
Andy

All we are saying is give thals a chance.

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Offline faibe10

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Re: Unrelated Bone Marrow Transplant.
« Reply #3 on: May 17, 2006, 01:47:46 PM »
get well soon

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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #4 on: May 24, 2006, 09:02:59 AM »
Dear All

Thank you.

The transplant is done in Subang Jaya Medical Centre in Malaysia. My daughter's Hb is maintained at 11.8 - 12.9 since her last blood transfusion on 28th April 2006. GVH is under control and we hope this would continue...

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Offline §ãJ¡Ð ساجد

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Re: Unrelated Bone Marrow Transplant.
« Reply #5 on: May 25, 2006, 04:27:31 AM »
Great news!

Best Wishes and get well soon
اَسّلامُ علیکم Peace be Upon you
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Offline Smurfette

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Re: Unrelated Bone Marrow Transplant.
« Reply #6 on: May 25, 2006, 05:18:05 AM »
 :flowers

Hi, Hope that all goes well for you and your daughter...

Best wishes and the best of luck..

Take care
Smurfette

 :getwell

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Offline Narendra

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Re: Unrelated Bone Marrow Transplant.
« Reply #7 on: June 06, 2006, 09:38:39 PM »
Hello Omega,

Nice to hear that your daughter is recovering well. It gives us immense joy to hear about success.

Would you mind sharing how did you get the unrelated donor match the HLA with your daughter?

-Narendra

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Offline mam

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Re: Unrelated Bone Marrow Transplant.
« Reply #8 on: June 13, 2006, 01:46:12 PM »
Wish your daugther get well soon.....

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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #9 on: July 30, 2006, 06:10:33 AM »
Hi All

Sorry to reply late. I did not have a internet access for quite some time!

Thank you for all the kind wishes

We got the unrelated bone marrow match from Tzu Chi General Hospital in Taiwan. It took us 9 months to find the match. The first matched donar changed his mind not to donate his marrow and we were lucky to find a second donar who evetually donated her marrow in April this year.

My daughter has encountered the GVHD and were treated with ATGAM and sirolamas. She is all right now but her blood count still fluactuating. We are keeping a close watch on the GVHD.

The drug sirolamas has caused many problems, diarrhea, dropping white blood count and platelet, lost of calsium and magnesium. The diarrhea was bad, 2 months long. we have stopped sirolamas a week ago, and the diarrhea is gone now and we are hoping her blood count would stabalised.

She is currently taking cellcept, prednisolone, bactrim,potassium cloride solution, epiin and fluconozole. Drugs we have cut include Valtrex, enalapril, and dilantin. Mt daughter is allegic to cyclosphorine

Thank you.

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Offline Andy Battaglia

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Re: Unrelated Bone Marrow Transplant.
« Reply #10 on: August 01, 2006, 05:42:40 AM »
Thank you for the update. Hopefully she will soon be past the side effects of the transplant and the medications. Please continue to keep us posted on the progress of your daughter.
Andy

All we are saying is give thals a chance.

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Offline Narendra

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Re: Unrelated Bone Marrow Transplant.
« Reply #11 on: August 01, 2006, 05:43:29 PM »
Quote
We got the unrelated bone marrow match from Tzu Chi General Hospital in Taiwan. It took us 9 months to find the match.

As far as I know Unrelated Bone Marrow Transplant is NOT done in India. Does anyone know, how to go about to get it done outside of India for my niece?? I have got her HLA matchup done. I would like to see what are our options and would greatly appreciate if someone could point me in the right direction. I think there is some registry we need to register with after sending the HLA typing.

We got my niece's HLA match up done with her brother and parents, but there was no match. So, we are exploring the unrelated Bone Marrow Transplant

Omege, How is your daughter reacting now with the GVHD? I hope she is doing fine now.

-Narendra

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Offline Danielle

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Re: Unrelated Bone Marrow Transplant.
« Reply #12 on: August 02, 2006, 02:42:42 AM »
Hi Omega!
I wish your daughter a speedy recovery, and I hope the BMT is ultimately successful!   :flowers

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Offline Poirot

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Re: Unrelated Bone Marrow Transplant.
« Reply #13 on: August 02, 2006, 10:37:39 AM »
Narendra,

You may want to contact these organisations, the first one seems to be a Dutch outfit, the latter two are in singapore:

http://www.bmdw.org/
http://www.hlaregistry.org/
http://www.bmdp.org/


Poirot


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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #14 on: November 03, 2006, 01:57:27 AM »
Hi All,

It has been more than 6 months from day 0 of the Bone Marrow Transplant. My daughter still taking steriod and other anti-GVHD drugs. The doctor is cutting the drug at a very slow pace in order to control the GVHD. GVHD can caused a lot of problems in Unrelated BMT cases and the drugs used to control GVHD are extremely expensive.

My daughter's blood count is stabalized but not back to the normal level at this stage and it takes time to go back to the normal level. The good news is her HB level is around the region of 13 - 15 and she is not transfused for the past 6 months. Platelet is around 60000 - 80000 at this stage. White blood count is the only one which give us problem and it's around 2100-3000 currently. We are not sure if the drugs my daughter is taking can suppress the white count.

The Bone Marrow has engrafted successfully in this case but the doctor is keeping a close eye on GVHD and other side effects of the drugs. Blood test has to be done weekly to monitor the blood count. Hope will get all this over in 1 or 2 months time. We have been very very stressful from day 0 till today.

Thank you.

 

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