Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: kabir_love on June 27, 2008, 10:49:11 AM
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HI EVERYONE
for a long time i had not made any post. after doing all the known cures and effort for my son but nothing... finally left with BMT. so i looked for donor but unrelated had there chances. so we plan for another kid..
my wife 14 th week of pregnancy done the test.
1. test done- my son coming.. is not major, doc said some traits but minor very littel traits.
2. today we were wating HLA typinG=== DOCTOR SAID 100% MATCH.
I DON`T HAVE WORDS TO SAY.. NOW 6 MONTHS. WATING AND HOPE FOR GOOD.
I NEED SOME HELP AS. NOW FOR BMT . DOCTOR CLASSIFY THE PATIENT POSITION FOR OPERATION SUCESS SO FOR KEEP MY SON IN BEST CONDITION TILL THE TIME COMES PLEASE ADVICE AND SUGGEST YOUR KNOWLEDGE TO ME.
REGS
MICKY
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This is indeed a great news that you got all the parameters of HLA matched 100%
Please take all the possibilities of the outcome in mind. It's a risky process.
praying for all the best and wishing you complete success.
:pray
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Hello Micky,
We have few posts where we have discussed about BMT. You can find it at
http://www.thalassemiapatientsandfriends.com/index.php?topic=117.0 (Successful BMT)
http://www.thalassemiapatientsandfriends.com/index.php?topic=119.0 (Successful BMT)
http://www.thalassemiapatientsandfriends.com/index.php?topic=280 (Possible 2nd BMT)
Also, Khalifa's son went through BMT for his son. He went through some tough times but came back with success due to the good treatment of doctor's
You might want to keep his ferritin levels in check and give him the best care so that his body is healthy before he goes in for BMT.
I got this from somewhere and which shows if the following criteria is met the the bone marrow transplantation can have a very high rate of success (over 90%):
1. Normal Serum Ferritin
2. Normal liver function
3. Normal liver size on U.S.G. or clinically
4. Normal liver histopathology on biopsy.
If these criteria are satisfied, the age of the patient and number of transfusions no more appear to be a bar towards the success of BMT.
You have been doing all you could for your son and am glad that the HLA matched 100% with the upcoming baby.
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I am praying for you, please keep us updated
manal
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hi kabir :
how r u ?.
dont worry broo .. everything will gonna b fine ... umair
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Hi Micky,
Hope everything will work out for the best. WIll be praying for you and your family. Take care and keep us updated!
lilian
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Hi Micky
congratulations. Have you discussed cord blood transplants. Kabir definitely has our prayers. All the best for whatever you decide
regards
maha
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thnx.
for cord blood my doctors here suggested that this thing is not that much sucessful then bmt. as per doctor we have to wait for 2 years before bmt. so we are in sreach for best place hospital to do bmt , i dont have much knowledge for this so will start searching for this and i hope in 2 year time more advaces comes in this feild making this more easier.
regs
micky
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Hi Micky
I was of the opinion that cord blood is more successful and a less risky procedure as chances of GVHD is greatly reduced. Andy or Narendra will definitely detail you on that. Transplant or no transplant Micky do store the cord blood , you will atleast have that option open.
regards
maha
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oh. i had done booking to storing cord blood here. as here new compnay reliance is storing.. also selling stemp cell as per your match for 6000 usd only. and this company is 100% best we know . one of patinet from pakistan came yest. and bought the matching stemp cells from them for transplant. but after that what happne i dont know yet.
storing also is ok normal cost about 1700 usd for 21 years.
and they gurantee the precentage and no. of stemp cell they ware able to preserve. to us after doing it.
micky
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Hi Kabir Love,
I think that you are very lucky and i will add you to my prayers for a successful transplant. My understanding of it though is that the transplant using cord blood cells would be faster and safer for the child as there is less risk for GVHD which is graft versus host disease- problems arising out of antibodies from the donor. Where would you be looking at going for transplant? I know of the hospital in Pesaro Italy where Professor Lucarelli first started off doing transplants, maybe you should check around while you have time.
Please continue doing your research.
Roanna
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I was of the opinion that cord blood is more successful and a less risky procedure as chances of GVHD is greatly reduced
maha you are right. In relation with GVHD, Cord blood is preferred to Bone Marrow Transplant
Micky, Go to this site, it has a nice table comparing cord blood transplant and bone marrow transplant
From:- http://www.womens-health.co.uk/bone_marrow.html
Graft Versus Host Disease is a potentially serious complication for any organ transplant. In fact, it is estimated to be fatal in up to 40% of patients. However, because cord blood is more primitive than bone marrow, there is a lower chance that these cells will attack the recipient's body, resulting in a lower incidence of GVHD.
Also considering that cord blood contains more stem cell than bone marrow, cord blood transplant is preferred
Stem cells are found in greater proportions in umbilical cord blood. In fact, some experts say it contains nearly 10 times the amount of stem cells found in bone marrow. Also, it is believed that stem cells found in cord blood have greater regenerative properties since they are younger than bone marrow.
I think saving the cord blood is definately a good idea.
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I WAS HOPING THIS SUPPORT HERE THAT Y I OPEND THIS THREAD TO KNOW EVERYTHING. I HAVE 2 YEARS WATITING BY THE TIME I HOPE THIS THING ADVANCES AND I MIGHT GO FOR CORD BLOOD. SO LETS SEE
TILL KNOW I KNOW ITALY LUCRALLI FOR BMT AND CMC VELLOR.. AS BOTH OF THESE DOCS DOING BMT ARE BEST NOW. SO LETS SEE WHEN TIME COMES.
HOPE FOR GOOD FOR ALL OF US
MICKY
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Hi Micky.
Dr Lucarelli is the most experienced bone marrow transplant specialist on earth. His clinic is where our member, Khalifa had the bone marrow transplants done for his son. It has now been 3 years and the boy is doing well. If you want to know more about Lucarelli and his clinic, please message Khalifa.
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hi andy
ya i know lucraelli is best. well i m also planning for doing there only but what i get to know is that the bmt cost there is about 1,00,00 usd. which i can do but doctor told me that if any complication comes in this case then the cost will multiply to anything can go 3 times, 4 times or even more. i m really confuse that if this happen what will i do... 4,00,00 usd is really difficlut. but i will try as i have 2 years for this, so i will try my best.
micky
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Hi Micky
Congratulation to you! You are definately the lucky one.
The cost of transplant is very expensive these days. I am not sure how much in total if the transplant is done in Italy, but you should get aside at least US$ 100,000 - US$200,000 for the transplant. In Malaysia it cost some where around RM 200,000 to RM 350,000 2 years ago. You would have to get yourself financially prepared should you decided to get it done in a private hospital. It might cost signicantly less if the transplant is done in a Government funded hospital.
The engraftment is faster in a bone marrow transplant compared to the cord blood transplant. But the chances of getting the GVHD is higher in the BMT. I have seen many sibbling BMT here, and most of them encounter mild GVHD.
All the best to you!
Best Regards
omega.
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Hi
what r the charges of BMT to Dr lucarreli ?.
what r the charges of bmt to Dr vichinsky at Children hospital oakland ?
if anyone know that so plz answer this post
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who is this doctor vichinsky in oakland?
is he good? i never heard of him.
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Dr Vichinsky is regarded s one of the top thalassemia specialists in the world. His efforts have not been confined to the US, as he has been very active in a thalassemia project in India and regularly speaks at international thal conferences. He is the director of the Hematology/Oncology Children's Hospital & Research Center at Oakland Children's Hospital, which is perhaps the top thal center in the world. He is a leader in both the treatment of thalassemia and also in thalassemia related research. He is also one of my personal heroes and a great inspiration to me with his constant efforts to improve the lives of thalassemics. Hearing his talk and meeting him briefly at the Dubai conference was one of the highlights of the entire conference for me.
http://www.childrenshospitaloakland.org/healthcare/depts/hematology_overview.asp
ELLIOTT P. VICHINSKY, MD
Primary Office
Pediatric Hematology Oncology Medical Group
747 52nd St
Oakland, CA 94609
Phone: (510) 428-3377
Fax: (510) 601-3916
Selected Personal Achievements
Listed in Best Doctors in America, 2007 (Best Doctors, Inc.)
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Dear Kabir
the cost of BMT in italy with Prof.Leucarali will be arround 130,000 euro arround 100.000 USD any way u can send a reguest to Prof Leucaralli and explain to him your setuation and as i remember he have a program for the PpL who they can't pay send for him a reguest and maybe he will do it free or maybe you pay somthing ...
ALL THE BEST BROTHER I WILL PRAY FOR YOU
KHALIFA
STATE OF KUWAIT
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khalifa,
thanx man,, being a father we always want best for our kids, well i m not selfish and specially one cant be in this case. as i had save 1,00,000 usd. for this. so i can give this from my pocket .. ill mail leucaralli and wil explain him .. i ll can deposit 1,00,000 usd . but as if any problem comes later or complication then cost of this multiplies to 4 times of more for that if he can see my situtation then ill be happy and more safe in this.
well lets see.. do u have his email: address i can atleast consult meanwhile
regs
micky
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contact me on my e-mail
red_pilot@hotmail.com
khalifa
state of kuwait
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Hi Micky,
It was heartning to read your mail about BMT.May god bless the child and he recovers fast enough to lead a normal life. through your mail I contacted Relicord personal for stem cells and it was heartning news for me to hear from them that they will be able to help me find the matching stem cells for transplant. Right now i'm going for hla typing of nanu in next 2to3months along with matching with her elder sister if god forbids that does'nt match i'll be going for stem cell option tanks micky it has given me second ray of hope that this guilty father would be able to repent and my daughter would be able to forgive me for what i've done to her life . keep posting. secondly there is some confereence to be held at lady hardinge med. college in delhi on 30thaug on exjade many renowned haemtologist such as Dr lokeshwar from bombay Dr marwah from PGI chandigarh are attending it make it apoint to attend. reg fee is 150to300pp and lodging is for 1k to5k pp
Guilty father of my cutie pie nanu
HI EVERYONE
for a long time i had not made any post. after doing all the known cures and effort for my son but nothing... lodging is depending upon your need ffinally left with BMT. so i looked for donor but unrelated had there chances. so we plan for another kid..
my wife 14 th week of pregnancy done the test.
1. test done- my son coming.. is not major, doc said some traits but minor very littel traits.
2. today we were wating HLA typinG=== DOCTOR SAID 100% MATCH.
I DON`T HAVE WORDS TO SAY.. NOW 6 MONTHS. WATING AND HOPE FOR GOOD.
I NEED SOME HELP AS. NOW FOR BMT . DOCTOR CLASSIFY THE PATIENT POSITION FOR OPERATION SUCESS SO FOR KEEP MY SON IN BEST CONDITION TILL THE TIME COMES PLEASE ADVICE AND SUGGEST YOUR KNOWLEDGE TO ME.
REGS
MICKY
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Hi Micky,
It was heartning to read your mail . may god bless Kabir .I'm also going in for hla typing and matching of nanu with her elder sister hope she gewts the match otherwise i'll go in stem cells sourced from relicord .thanks for that inf. also. hope god gives me one chance to repent my mistake by giving my cutie pie nqanu to lead a normal life .keep posting . there is one conferens=ce in delhi on exjade at lady hardinge med. college on 30th aug08 try to attend it
HI EVERYONE
for a long time i had not made any post. after doing all the known cures and effort for my son but nothing... finally left with BMT. so i looked for donor but unrelated had there chances. so we plan for another kid..
my wife 14 th week of pregnancy done the test.
1. test done- my son coming.. is not major, doc said some traits but minor very littel traits.
2. today we were wating HLA typinG=== DOCTOR SAID 100% MATCH.
I DON`T HAVE WORDS TO SAY.. NOW 6 MONTHS. WATING AND HOPE FOR GOOD.
I NEED SOME HELP AS. NOW FOR BMT . DOCTOR CLASSIFY THE PATIENT POSITION FOR OPERATION SUCESS SO FOR KEEP MY SON IN BEST CONDITION TILL THE TIME COMES PLEASE ADVICE AND SUGGEST YOUR KNOWLEDGE TO ME.
REGS
MICKY
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ill surely come to confrenre. so for reg. do you know where to contact now... or just go and go in. like this
regs
micky