Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Ambika on December 10, 2007, 11:02:48 AM
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hi there
good news my daughters HLA Mapped
Ambika (9 months old) HLa has been mapped with her sister on last saturday the hospital(AIIMS ) People told me. . Now they are doing another test and after that they will give us the reports . please can any one giude what I have to do further again ambika hb fall s to 8.5.
regards
rupali
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Congrats Rupali :goodluck Though i think you'll have to wait till your daughter is two years old.
ZAINI.
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CONGRATS RUPALI,
I AM VERY HAPPY THAT YOUR DAUGHTER HLA MAPPED WITH HER ELDER SISTER.
AS ZAINI SAID YOU HAVE TO WAIT TILL YOUR DAUGHTER IS 2 YRS OLD.
:cheer :veil :stars
:goodluck
DIMPLE
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good news my daughters HLA Mapped
Ambika (9 months old) HLa has been mapped with her sister on last saturday the hospital(AIIMS ) People told me. . Now they are doing another test and after that they will give us the reports . please can any one giude what I have to do further again ambika hb fall s to 8.5.
regards
rupali
Did you get all the tests done? They do HLA A, B and DR test. If all these match for the donor and receipient, then there is a full match, If that is true, that is really a good news.
Try to find out as much information for the BMT. Also, you might want to find out where you want to get the BMT done. Ask the hospitals what is the success rate and which doctor is doing it, as the results vary with the staff.
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Congratulation, i am really soooooohappy fo you. As i said before, i know a little girl who has done a BMT when she was 11 months and now she is 3.5 years
Manal
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Great news Rupali!
I wish you all the best for deciding to go for BMT or not. Keep in mind the best possible place with the best success rate that you can go for. Also ask your doctors about peripheral Stem Cells instead of BMT. I hope it will be less invasive for your little donor.
:goodluck
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Dear all
Thank you very much for your good wishes :smiley
I am trying my best that I will go for BMT from a place having good success rate .I want to mention that till now we are making our mind to go for CMC(Vellore). If any one can help me in this regard or know any other option please tell me and forward me the details I will be obilized .
Manal can you please forward me the details of the child whose BMT is done when she was 11 months you can call me +91-9811971982.
Sajid please tell me what is this peripheral Stem Cells
Regards
Rupali
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Hi Rupali,
They are stem cells that are circulating the in blood stream. These are the same as the ones in the Bone Marrow. Collecting them is less painful for the donor as they are collected from the blood instead of Bone Marrow which is collected by a more painful method by going to the marrow between the hollow bones (even though in BMT the donor may be under anesthesia but recovery takes more time.)
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Dear Rupali
If planning for a BMT in India, CMC Vellore is the best place with the highest success rate. We did talk to one of the haemo there and he informed us that for the past two years they have been doing Bmt using peripheral stem cells alone. The other painful method is no longer followed. When we asked about rejection, they said nowadays rejection was seldom fatal since they take utmost care. The patient is hospitalised for three months. They have a long waiting list for bmt`s, so probably by the time your little girls turn comes she would probably be 2 years old. All the best.
Wishing you hoards of luck,
MAHA
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Dear Rupali
Actually i met the mother of this girl in the clinic by coincidence, we met two times but i don't know her number. All what i know is that she has three children , first one is 18 years old, thal intermediate and is engaged in Dr. Suzane Perrine Study that is done in Boston medical center. Another boy who is normal and the third girl was mistaken in the aminothentiseis test when the mother was pregnant with her and the test said that she was not thal but turned out to be. As she said that she wasn't able to experience the same feelings again as with her elder son and so she did the transplant and the donor was her other son who totally matched with her. What i know is that she is now 3.5 years and she is still under supervision with her doctor, but doing fine and she said that she did it when the girl was 11 months.
I don't know if age is an important factor due to medical concerns or these are just regulations.
Manal
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I am trying my best that I will go for BMT from a place having good success rate .I want to mention that till now we are making our mind to go for CMC(Vellore). If any one can help me in this regard or know any other option please tell me and forward me the details I will be obilized .
Manal can you please forward me the details of the child whose BMT is done when she was 11 months
Regards
Rupali
Rupali,
CMC Vellore is the one of the best options. You might want to get the documents (material) they send with the current success rate and the precautions, cost, statistics at CMC through email.
Also, there is BMT done of a girl from Delhi, so it would be a good idea to talk to this family and meet them in person and ask their opinions. (I will send you their contact info if you want).
Another 6 year young, girl got her successful BMT done last december(2006) in Pune in Sahyadri Hospital under Dr. Shashikant Apte.
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Hi Rupali
As far as i know CMC (vellor) is the best option for BMT in India.
I have e-mail of the Dr. who is head of the dept. for BMT done in CMC and it is
mammen@cmcvellor.ac.in.
you can write him and consult about your daughter.
love
Dimple
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Dear All
Thank you very much for your concern and suggestion :smile
I will definately follow them Please pray for my daughter she came out successful from all this.
Dear narender
Can you please give the numbers as you have mentioned in your Post youknow my number 9811971982.
With regards
Rupali
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This isn't something I enjoy bringing up. Parents, please make sure you fully understand the risks before pursuing a bone marrow transplant for your thal child. Every clinic in the world experiences failures and parents need to understand that death is one of the possible outcomes from a BMT. Two Maldivian kids, Ahmed and Zeeshan, died this week after recently undergoing BMT's at CMC in Vellore. It is very sad and their families and friends are devastated. Ahmed was considered to be the healthiest thal in the Maldives before the BMT, but when the body rejects the transplanted bone marrow, the patient may die.
Please understand that it is your child's life at risk. Treatment is much better than in earlier years and a patient who complies with treatment has a good chance of living into the fifties and maybe the sixties or longer. Treatment should be carefully weighed against a possible cure using BMT, and the risks understood along with the understanding of the quality of life issues involved with each, before choosing a BMT.
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This isn't something I enjoy bringing up. Parents, please make sure you fully understand the risks before pursuing a bone marrow transplant for your thal child. Every clinic in the world experiences failures and parents need to understand that death is one of the possible outcomes from a BMT. Two Maldivian kids, Ahmed and Zeeshan, died this week after recently undergoing BMT's at CMC in Vellore. It is very sad and their families and friends are devastated. Ahmed was considered to be the healthiest thal in the Maldives before the BMT, but when the body rejects the transplanted bone marrow, the patient may die.
Please understand that it is your child's life at risk. Treatment is much better than in earlier years and a patient who complies with treatment has a good chance of living into the fifties and maybe the sixties or longer. Treatment should be carefully weighed against a possible cure using BMT, and the risks understood along with the understanding of the quality of life issues involved with each, before choosing a BMT.
I agree with Andy. As hard as it is parents should look at the possible outcome of failures in BMT. The failures do happen and that is why it is important to know, the chances of success and the factors that affect the success
Andy, It is always sad to hear about the loss of thals. Could you let us know who performed the BMT for Ahmed and Zeeshan? (Which doctors?).
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Hi Andy
Could you tell us how old they were. The doc in CMC vellore told us rejection nowadays didn`t result in death always. There are exceptions I suppose, as Abdul Wahab did recover from a rejection. :dunno
Regards
MAHA
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Both kids were around 17 years old. I do not know who the doctors were. If I can find out I will post the information.
Abdulwahab's doctor, Dr Lucarelli told me that Abdulwahab was fortunate, as patients often don't survive severe host vs graft disease. The severity of the HVGD cannot be predicted in advance and varies greatly. A small percentage of bone marrow transplants result in severe HVGD and this happens at every clinic. Younger patients do have a better survival rate than older ones.
I don't want to discourage parents from considering a bone marrow transplant, but I do want them to be totally aware of the risks, and be prepared for any eventuality. Deciding on a bone marrow transplant will never be an easy decision and parents should understand everything that is involved, including aftercare and quality of life, and whatever risks are involved, in choosing either path.
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Oh my!
I'm so sorry to hear about Ahmed and Zeeshan :(
May their family find the strength to bear this loss and may Ahmed's and Zeeshan's soul rest in peace and Almighty God give them a place in heaven.
:sorrow
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i agree with you andy,
the smallest risk (which we were told is 1 in 10) of death is way too high a risk for us.
i take my hat to people who choose this path as i dont have the strength to put christian through it or my family.
vic
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I'm so sorry to hear about Ahmed and Zeeshan
I am can feel the pain through which there parents are going .May there soul rest in peace
I agree with Andy and all of you.
But I want to Mention onething that all of you will agree that without going for BMT we thal are still risking our lives with every transfusions. As we trust all blood banks etc who give us tested blood still sometime we get infected blood and as a result due to mistake of other we loose our right to live and see life that is very beautiful. With BMT this risk reduced I know I have to take lot of care of my child but i want to give her life that she can live without any worry that her ferritin is now going up and now she had to go for transfusion beacuse for every parent this is painful when you have one normal child and another thal major because these two girls are my two eyes and if any of one of them is in pain I can feel that pain.
regards
Rupali
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Dear Rupali
We prefer to do the transplant when the child is two years old
Please could you send us the HLA reports and the medical report on which the diagnosis was made by post with all your contact details. We will then fix a transplant date ? August 2009
the patient and donor can come for the preliminary evaluation in Jan 2009
Meanwhile please continue regular transfusion and initiate chelation after the 10th transfusion
regards
dr mammen chandy
Dear all
Reply of Dr mammen chandy has come they are saying to wait till aug2009 and he is also saying to initiate chelation after 10 transfusions but the aim people are saying to go for chelation after 20 transfusions. please can anyone throw a light on this.
regards
Rupali
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Hi Rupali,
It's not the number of transfusion that matters; it's the amount of blood that has been transfused and the increase in Serum Feritin that has resulted from them that counts. Usually chelation starts when Serum Feritin is above 1000 which normally happens after 10-20 transfusions depending on the amount of blood given w.r.t child's weight and Hb levels.
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Hi Ruapli
I think Dr. Chandy has advise you chelation after 10th transfusion is becuase the less iron deposit in the organ is good for the patient going for BMT.
:goodluck
Dimple
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Hi Ruapli
Can you pls. tell me what is the cost of BMT in CMC-Vellor.
Love to your daughter.
Regards
Dimple
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Hi Dimple,
I am not sure about the current costs ,but back in 2004 when Zainab was diagnosed,and i was searching for options,i met a lady whose son went through BMT at CMC-Vellore,and she told me that their expenses were about 15 to 16 lacs ,in Pakistani currency,later i heard that this is nearly the same cost here in Pakistan.
ZAINI.
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Hi Rupali,
I am a new mom joined this group recently. My 18month old daughter was diagnosed as Thal major when she was 11 days old. We were also looking for BMT option when we first heard about this condition. At the time, we met Thal specialist in Boston Children's hospital Dr. Neufeld and transplant specialist Deb Chirnomas (spelling ?). Both of them told us that the best time to do BMT is between 5 and 8 yeards old. It seems till 5 yrs of age, the brain develops and chemo therapy is not good for brain and cognitive development. So, BMT should be avoided till 5 yrs, if the condition is not life treatening. So, please think carefully when you decide on BMT for your daughter, as Thal is not life threatening and can be managed well with regular transfusion and chelation.
On Chelation, again my daughter's hemo says, for children, the chelation should be started when the ferritin level reaches between 1500 and 2000 and the child is above 2 yrs of age. If the ferritin is below 1000, the chelation medicine can chelate other useful elements like Zn, Cu etc which can affect growth and development. So, please talk to your hemo who is specialist in Thal to start any chelation for your daughter. Dr. Cheddy may be a great transplant specialist but he may not fully know about chelation to suggets the best approach for managing Thal.
Whatever you decide, I will pray for you for positive outcome.
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Bringing up an old post, but this is related to the original poster.
I just talked with the father of Ambika (2 and half years). She has gone through the transplant on 5th December at CMC Vellore (India).
This is another angel who is looking for prayers from all of us for a successful outcome.
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May the transplant be successful in all respects and this another angel live a very healthy life..........
Ameen
Abbas
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Narendra,
Please convery our prayers and well wishes to Ambika and our family,all our prayers are with her :pray .
Zaini.
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Narendra, please try to update us if possible.
Wishing the little angel all the success. They are in my prayers
manal
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Some news to share. I got this message today regarding AmBika's BMT
please forward this Message to all members that AmBika with God Grace is Fine After BMT and is back at her home in Delhi . There is some problem in site accessing when it will get OK I will definitely post the pictures of Ambika at the time BMT in Vellore
My Family and I want to thank you all for Praying for my Little Angel . May God Bless you all and all you dreams come true
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Narendra,
Thank you for the update. I am praying that she continues to improve each day. Best wishes to the entire family as they get through this.
Sharmin
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Thanks Narendra. I hadn't had time to post this yet.
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Everytime i get to know that one of our little ''warriors'' had made it through all the hardships of the transplant, i really feel so happy and releaved. Congratulations for all the family and thanks Narendra
manal
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Thanks Narendra,
Its morning here and what a good news to start your morning with :yes ,best wishes for ambika :goodluck .
Zaini.
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Wow!Great news that.....
Narendra....thanks a lot.....
I am sure having you all made a difference to Ambika and Rupali as well!
Madhavi
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Very happy to hear about Ambika.May God shower his choicest blessings on her and keep her healthy and happy forever.
God bless you and your family Narender.