Unrelated Bone Marrow Transplant.

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Offline §ãJ¡Ð ساجد

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Re: Unrelated Bone Marrow Transplant.
« Reply #75 on: April 21, 2008, 05:16:17 AM »
Omega,

Best wishes for your daughter's future! :flowers

@ Maako

Blood letting is done to lower the Serum Feritin.
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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #76 on: April 21, 2008, 05:42:37 AM »
Thank you All.

200ml of blood was disposed off on 18.4.2008. The Hb dropped from 12.5 to 11.5. The next one schedule on 2.5.2008 but we are still undecided whether to go or not. Perhaps 2-week gap is too close?

Best Regards

omega.

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Offline Zaini

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Re: Unrelated Bone Marrow Transplant.
« Reply #77 on: April 21, 2008, 11:24:09 AM »
Hi Omega,

Ofcourse you'll have to decide about blood letting,but what i think that as your daughter's ferritin is not that high,You can wait for a month,still i am not a doc,So you'll have to decide yourself,why didn't you check the ferritin after blood letting.

ZAINI.
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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #78 on: April 21, 2008, 11:47:10 AM »
Hi Zaini
Thank you for your reply.
The doctor recommended once every 2 weeks but we feel that it might be to close. The advantage of doing it every 2 weeks is we will get her ferritin to 300 in a shorter time. We might give it a try and see how it goes.
Thank you.
Best Regards
omega

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Offline Andy Battaglia

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Re: Unrelated Bone Marrow Transplant.
« Reply #79 on: April 21, 2008, 03:19:38 PM »
Omega,

The only precaution is to make sure the Hb does not drop to the point where the bone marrow activity becomes overactive, as this will increase iron intake from the gut. I would suggest keeping the Hb above 11 at all times.
Andy

All we are saying is give thals a chance.

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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #80 on: April 22, 2008, 02:14:24 AM »
Thank you Andy.

Just got my daughter's latest ferritin result, 747 before the blood-letting, drop from 971, 2 weeks ago. I think I will do the blood-letting once a month because I expect the ferritin to drop to the targeted 300 level after another 3-4 sessions. I must say I am surprise with the ferritin level dropping at such speed.

Thank you.

Best Regards

omega.



 

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Offline Andy Battaglia

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Re: Unrelated Bone Marrow Transplant.
« Reply #81 on: April 22, 2008, 03:49:20 AM »
Omega,

I think that's a good idea. The ferritin dropped enough and there is no sign of excess bone marrow activity. More frequent blood-letting might chance the Hb dropping low enough to cause excess iron absorption. I think you have a good handle on how to manage this. I'm continuously happy to hear these reports.
Andy

All we are saying is give thals a chance.

Re: Unrelated Bone Marrow Transplant.
« Reply #82 on: April 22, 2008, 12:09:33 PM »
Hi Omega,

My daughter has just been diagnosed with Thalassemia Major. We are from Malaysia. Can we please know the cost of the transplant in SJMC.

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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #83 on: April 22, 2008, 08:32:26 PM »
Hi Rhea

I am sorry to hear this.

The transpalnt costs of my daughter in 2006 was around RM 300,000. I presume it should be higher now because the cost of drugs have definately increases over the years. Unrelated transplant usually would cost more because of the costs of treating the GVHD.

Thank you.

Best Regards

omega

Re: Unrelated Bone Marrow Transplant.
« Reply #84 on: May 28, 2008, 04:19:45 AM »
Hi Omiga,

My nephew is just one year old and he has been diagonised thalassemia major. I want to know , from where you have taken treatment of bone marrow transplatation of  your daughter and what outcomes are?

Best wishes for your daughter.:rotfl

Surayya

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Offline Sharmin

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Re: Unrelated Bone Marrow Transplant.
« Reply #85 on: May 28, 2008, 04:46:13 AM »
Sounds like your daughter is doing well Omega - the ferritin seems to be decreasing.  I am very happy for you - I wish your daughter a very bright future! 
Sharmin

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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #86 on: May 28, 2008, 06:34:56 AM »
Hi Surrayya

We are in Malaysia. The transplant was done in Subang Jaya Medical Centre. Please let me know if you need more information.

Hi Sharmin

Thank you.

My daughter's current ferritin is around 750 - 800. We expect to her to have a few more phlebotomy before her ferritin drop to the targeted 300. Her hb would dropped by 1 each time post phlebotomy (200ml was taken out). Her last blood count on 16.5.08 was ok, hb 12.5, WBC 6700 and platelet 215000. LTF result was good as well. We were particularly happy to learn that for the very first time in 2 years, her platelet was 215000. We have to said it's not easy to reach this stage because many things happened! We have learned a lot during this 2-year post transplant period!

Thank you.

Best Regards

omega.

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Offline kabir_love

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Re: Unrelated Bone Marrow Transplant.
« Reply #87 on: May 29, 2008, 07:59:58 AM »
hi omega.
im happy for you that you had passed all this time and future for you is full of happiness.  as now we are planning for my son bmt.. as my 2nd child is coming and his hla i hope matches with my son kabir so that he will be a suitalbe donor aswell. but meanwhile im looking for a better place hospital to do the bmt .. and as reading your post your hospital in malaysia give me a lot of confidence so i might consider that also in future. as in inida is not good and i dont want any chances. so lets see.

regs
micky

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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #88 on: May 29, 2008, 09:56:52 PM »
Dear Kabir_love

Wishing you all the best.

Best Regards

omega

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Offline omega

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Re: Unrelated Bone Marrow Transplant.
« Reply #89 on: August 26, 2008, 01:53:47 AM »
Hi All

We have done six phlebotomy todate, and the latest ferritin of my daughter is around 450. On average, ferritin has reduced by around 60-70 for each phlebotomy where 200ml of blood was taken out each time. It's not an easy task! We expect 2-3 more sessions to go before reaching the targeted 300.

Thank you.

Best Regards

omega

 

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