Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: zahra on December 16, 2015, 08:02:12 PM
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Am thinking of going for this. Wondering if anyone has any information/experience?Apparently it's much more successful now and almost everyone has a haploidentical match.
Zahra
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Thanks for bringing it up. I actually did not knew about it, but found some useful information in the link below.
http://www.leukaemia.org.au/treatments/stem-cell-transplants/haploidentical-stem-cell-transplant/haploidentical-stem-cell-transplant
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3507140/
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It's all about success rates, Zahra. If you can find a center with an excellent success rate, it is worth going for. There is not a lot of experience with it, outside of Dr Sodani's long experience, but his success rates have been remarkable in more recent years, so I would expect that some other centers will emulate his success. If you find centers that are doing it, their data on these transplants will be essential in choosing where to do it.
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It's all about success rates, Zahra. If you can find a center with an excellent success rate, it is worth going for. There is not a lot of experience with it, outside of Dr Sodani's long experience, but his success rates have been remarkable in more recent years, so I would expect that some other centers will emulate his success. If you find centers that are doing it, their data on these transplants will be essential in choosing where to do it.
Hi,
could you please guide me what is the best way to contact Dr, peter sodani ?
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You can contact him at curethalassemia.org but Dr Sodani is currently a man without a hospital.
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My daughter just have haploidentical bmt in bangkok, 25 mei 2015. So for everything are good... may be i can share my experience.
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My daughter just have haploidentical bmt in bangkok, 25 mei 2015. So for everything are good... may be i can share my experience.
could you please share more information? like the age of your daughter? cost of BMT ? how long she stayed in hospital ?
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Gabriellavanessa,
Congratulations on your little ones transplant.
Thank you for the offer to share your experience. It would really help those who are thinking about this kind of transplants. I look forward to hearing more.
Zahra
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sorry for late respone. I forgot already post this :-). My daughter was 6 years old,when do BMT in bangkok. Donor was her father, with 5/8 HLA matching. Actually we from other country. So we stay in bangkok for 4 months.
Our doctor is very brilliant, he already do Haploidentical BMT , for more than 40 cases, since this 2 years. Only 1 failure, the rest is success.
Cost depend on which hospital. For our case, we choose bumrungrad hospital , private hospital, the most expensive hospital in bangkok. Cost, ONLY for BMT, 70.000 usd. Not included, cost after bmt. Roughly, total cost of all cost, include stay in bangkok 120.000 usd.
For comparison, my friend, just spend for TOTAL cost, only 80.000 usd, but they choose other hospital, samitivej hospital, in the suburbs. The doctor is same, only hospital different.
BMT acctually is not so scarry as we read in internet. Most important is we must aware when in the BMT room. We must in good condition.
All the effect of chemo drug, can be solve by other preventif drug.
For south asia thal patient, i suggest go to bangkok for BMT. Singapore , malaysia, not recomended. Singapore good in cancer, but for thallasemia case, for them is very rare handle this case.
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I agree with Gabriellavanessa. Though BMT is fraught with risk and is a difficult process, it is not as scarry as we all have made it to look. If things go right then every day is a joyful experience.
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Hi Gabriellavanessa,
Thank you so much for your post. It gives the rest of us hope. May I ask which doctor you had and whether you met any 4/8 success stories. I mean half matched successful transplants where Mother was not the donor.
Zahra
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Hi Andy,
Are we now suggesting to try Haplo-identical BMT, as opposed waiting for gene therapy or luspatercept trails??
very confused at the moment, in terms of direction to take in getting our daughter of Thal.
warm regards
R
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Haplo is all the rage these days, but I would have to see the success rates of the intended hospital before even considering it.
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Hi Zahra,
sorry late response, just read.... my daughter was using donor from her father with 5/8 matching. For Haplo minimun is 4/8, for risk of GVHD. Our doctor is Suradej, you can contact this doctor using website from bumrungrad hospital, cost for consultation in that hospital 3000bath, around 100 usd. but if u want to do the bmt,and want to save the money, better ask doctor to use another hospital, such as Samitivej, or paya thai. Around 20-30% more cheaper. Suradej is good doctor, may be for me is Best doctor :-). He is open minded doctor, so you can consultation or debat something with him :-), he will answer every things.
Advise for who want to do this procedure, first thing, must know the RISK, every patient is different, some patient go through this procedure easily, but some patient with worse complication. two, MUST KNOW, cost for BMT for each person is different, depand on complication after bmt. Just now, my friend , done the bmt on june, till know still in ICU room, cause of bad complication, till now already spend almost 10million bath, around 350.000 usd. So better to do a consultion first with the doctor, know the risk. But till now, succesfull rate still above 90%.
Above all, pray to GOD, surrender all to the GOD, and believe every things will be fine in time. GBU
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Hi Zahra,
sorry late response, just read.... my daughter was using donor from her father with 5/8 matching. For Haplo minimun is 4/8, for risk of GVHD. Our doctor is Suradej, you can contact this doctor using website from bumrungrad hospital, cost for consultation in that hospital 3000bath, around 100 usd. but if u want to do the bmt,and want to save the money, better ask doctor to use another hospital, such as Samitivej, or paya thai. Around 20-30% more cheaper. Suradej is good doctor, may be for me is Best doctor :-). He is open minded doctor, so you can consultation or debat something with him :-), he will answer every things.
Advise for who want to do this procedure, first thing, must know the RISK, every patient is different, some patient go through this procedure easily, but some patient with worse complication. two, MUST KNOW, cost for BMT for each person is different, depand on complication after bmt. Just now, my friend , done the bmt on june, till know still in ICU room, cause of bad complication, till now already spend almost 10million bath, around 350.000 usd. So better to do a consultion first with the doctor, know the risk. But till now, succesfull rate still above 90%.
Gabriela I needam your guidance
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Hi need assistance for Suradej.
Can you guide.
I emailed all three hospital and they say come to Bangkok for appoinTrent.
Now , if I travel and then come back, how this will reduce cost.
Please guide