Bone Marrow Transplant - Thalforum

Neel_R · January 31st, 2007, 03:12 PM

If you had a sibiling who was a 100% match. Would you get a bone marrow transpant?

If you say no, why?

SophiaG · February 5th, 2007, 02:42 PM

I wouldn't because the risks associated with a transplant are far too great.

poppy · February 11th, 2007, 09:27 PM

I'm the same as Sophia!
Sophia congraulations your baby is really cute!!!

Narendra · February 12th, 2007, 02:39 PM

Hello Neel,

The answer cannot be X or Y. There are lots of factors taken into consideration for this.

Some of them are Serum Ferritin level, patients age, liver function, Liver size, Cost, Current treatment and/or management of thal related to Chelation, risk of graft versus host, how the transplant is done. There might be a few more, so I am sure, we cannot say Yes or No. I initially said Yes, but after thinking about it, i am not sure and would say Yes or No depending on the factors mentioned above, plus I am NOT a Thal(Major) so don't really have a right to say Yes or No

Farooq · February 21st, 2007, 03:07 AM

my answer is yes subject to all the considerations and any other that narendra have mentioned. especially the health care system too. where i come from it is just hit and try policy so if things go wrong, theres no one to raise them at. besides, quality of life undoubtedly increases with a successful bmt.

i have a daughter who has been advised bmt and she has fortunately a sister who is an identical match and an eligible donor. an in fact we are thinking of going ahead with the bmt in a few months time.

Prince · February 21st, 2007, 04:37 PM

as per my current conditions I think I will not go for it as there are lot of preconditions to BMT.

yousaf · March 6th, 2007, 04:00 PM

Depends i guess there are other predictors for transplant matching not yet easily tested or perhaps not tested at all with current day labs that account for transplant rejection even in cases when we say that the match is 100%, i guess the match with 100% means that the donor match the recipient on all the loci for HLA Classes which i guess are 2 which are tested but yet there are many others predictors as well which are not matched or couldnt be matched that may account for transplant rejection. If anything you know further in your research do add i will lke to know more about the same business. Yousaf

Narendra · March 6th, 2007, 07:16 PM

Quote:

Depends i guess there are other predictors for transplant matching not yet easily tested or perhaps not tested at all with current day labs that account for transplant rejection even in cases when we say that the match is 100%, i guess the match with 100% means that the donor match the recipient on all the loci for HLA Classes which i guess are 2 which are tested but yet there are many others predictors as well which are not matched or couldnt be matched that may account for transplant rejection. If anything you know further in your research do add i will lke to know more about the same business. Yousaf

I think for a 100% match, they initially test for a complete match for A Locus, B Locus and if there is a match for A and B locus, they test for C Locus, DR Locus. If all the antigen match, only then there is a complete match.

Vik · March 17th, 2007, 09:23 PM

Yes, I believe if I met all health requirements for a BMT (iron-overload limit, liver and heart condition, age etc) and if my parents had enough money at that time to cover the cost of the BMT + I had a sibling with 100% match - then they would have certainly gone ahead for a BMT.

I think just like a astromonical event for example the recent lunar eclipse which happens when all things are aligned together like a celestial event - simmilar all aspects of patients health and a matching donor has to be in perfect sync to even consider a BMT........given the risks.

minimo156 · October 25th, 2007, 10:52 AM

I would and I did ... turned out successful but there are big risks

My bmt was 10 years ago and now my blood is "normal".

BMT is very hard physically and emotionally so some people understandably would be put off if they were coping well with thal major.

Anyway hope everyone are well and I look forward to discuss more issues with u

Thanks
Mo

Narendra · October 25th, 2007, 11:01 AM

Quote:

Originally Posted by minimo156

I would and I did ... turned out successful but there are big risks

My bmt was 10 years ago and now my blood is "normal".

BMT is very hard physically and emotionally so some people understandably would be put off if they were coping well with thal major.

Anyway hope everyone are well and I look forward to discuss more issues with u

Thanks
Mo

Mo,

Would look forward to hearing from you about your experiences with the BMT. I am glad things turned out well for you, but as you mention there are lots of things to consider before doing a BMT. A lot of members ask about it, so it is good to see someone who has got a successful BMT done able to share their views

Where did you get the BMT done? Were there any complications?

minimo156 · October 25th, 2007, 11:19 AM

Hi Narenda

I got my bmt done in Royal Manchester childrens hospital (in the UK)

There were quite a few complications, when i was nearing the end of my hospital stay I fell ill and they feared a rejection but all praise to God it wasnt. A few years later when i was 9 (I was nearly 7 when i had bmt) whilst in marks and Spencers (popular clothes shop) my eyes went very red and I coughed a lot. The doctors didnt know what it was so they took a bit of my lung out to see what it was, basically I was told that my sisters cells(she was the donor) were fighting mine but fortunately they were able to stop it. When I came out of the operating theatre I had a tube up my rib and it bloody wrecked. I never screamed like I screamed then (well you would wouldn't you!). And a year later I had shingles near my hip, they hurt too (They may not be due to a bmt but ... well... might as well include it if we talking about problems after bmt). My teeth also got pretty bent but now
I've got braces they not as bent.

Life for me has been very rocky and like a rollercoaster you didnt really want to go... So thats me,

talk to you soon

Mo

Narendra · October 26th, 2007, 10:48 AM

Hello Mo,

I can imagine that to be a tough time for you as well as your family. I met a boy who got his BMT done and saw the photos of his journey and talked with them and that conversation gave me a sense of how tough BMT can be.

Now, that you are not needing any blood transfusions - at least you can feel good. Do you know what your Ferritin levels are now? I know some successful BMT patients have to do chelation even after a successful BMT to get the ferritin levels in normal range. Although, for you it seems a long time, so I assume your levels are in normal range now

minimo156 · October 26th, 2007, 11:32 AM

Hey Narendra

there were a few problems with my ferritin levels when I was in my early teens (12-13) and as a result I had to have 200 ml of blood withdrawn very two weeks for about 6 times, this happened about 2 times. Now it is ok but my favourite drink is iron-bru which has ferratin sulphate (or something) in it so I dont drink that as much as I use to.

What do you mean by chelation?

Thanks
Mo

vamanjani · October 26th, 2007, 08:19 PM

Dear all,
The original question was that if you have 100% HLA sible match, would you prefer to go for bone marrow transplant?
The reply is affirmative provided you have funds availibility and aftercare.
We have two such cases of successful bone marrow transplant in my small town JAMNAGAR - a boy named RINKU - who must be 22 years by now and transfusion independant - and a girl - who underwent BMT before two years and faced no problems.
Rinku had severe GVHD but fortunately could overcome. It was only due to BMT match problem which was not 100%
Narendra is correct in stating that even after BMT, sometimes the doctors advise for iron chelation and do lab test for feritin level/iron in the blood.
This is the ultimate for Thalassemia cure provided you have 100% match and above all that you can afford.