2nd BMT Possible?

Is a 2nd BMT possible to have done?


I just read a post by Nerendra about a boy that had a BMT done twice.

My son had a BMT done years ago that failed due to I believe his chemo not being strong enough to kill off all of his cells so the  cells that were left took over the new ones.  My other son is a perfect match for him, I was under the impression that a 2nd transplant was not possible, so I never really discussed it further with his doctor.

Anyone have any further information regarding this and any other successful 2nd transplant done that anyone knows of?

Yes, a second bmt is possible. Khalifa's son had his second bmt last year and this time it worked but it was a very rough time for awhile as the boy had severe host vs graft disease afterwards. He is finally home now.

Lily,

Hope you son is doing fine. Getting our kids better is one of the best dreams we have in our minds.

There was a boy (age 16 years) in India who got a successful 2nd BMT. His Iron level was up to 16000 but is now under 3000. The boy has not got blood transfusion since last 5 years

You can read the details about his successful BMT at the following link - Successful BMT - Match with Sister

The 1st BMT failed for the above case as it was done on a low dose and at that time BMT was new back in India.

There are a lot of thing you need to consider before you think for a 2nd BMT.

-Narendra

thank you Narendra,

I did follow your link and read about the boy wit the succesfull BMT.
I agree with you, there is a lot to take into consideration, unfortunately my son does have a damaged liver which I'm sure might not make him a viable candidate.  I wish I would have known about this years ago, before he developed so many health problems.  I would still like to discuss it further with his doctor and see what the possibilities might be for him.

I'm glad I now have this website where I can turn to for information and support.  Unfortunately his doctor doesn't specialize in thal so I really don't get any information from him, I'm happy to have found you guys.

Lily

Hello Lily,

I agree with you. This site gives us tremendous strength and quite a bit of information on Thalassemia which is quite unknown.

It is said that the younger the patient for Bone Marrow Transplant, the better it is. This may be due to the Iron Overload complications. The more blood transfusions done, the more Iron is accumulated.

Below are some of the complication that might happen due to Bone Marrow Transplant

COMPLICATIONS

1. INFECTION :
During the period after giving conditioning and before engraftment, the patient's white cells count is very low and the patient is prone to bacterial and fungal infections.  There is also a high risk of viral infections like herpes and CMV for about one year post transplant.

2. GRAFT FAILURE-REJECTION :
In about 10 to 20% of patients, the donor’s bone marrow may fail to engraft or be rejected some time later.  Graft rejection can occur many months after transplant and will result in the patient becoming transfusion dependant again with relapse of the thalassaemia.

3. GRAFT VERSUS HOST DISEASE :
Despite adequate HLA matching in some patients the donor's cells detect minor differences between the donor and patient and can attack the patient.  This manifests as skin rash, jaundice, diarrhoea and fever. This is controlled with cyclosporine and steroids.  If it is mild it does not cause significant problems but severe graft versus host disease can be fatal. This complication is seen in 20 % of children.

Also, I know patients with severe cardiac dysfunction related to Iron Overload are not taken for transplant

Another important consideration is where the Bone Marrow Transplant is done. I know hospitals in USA are well equipped and have a lot of facilities, but the doctors doing the transplant are also important and the success rate of the tranplant is a major factor while considering the BMT.

Do ask questions so that you get more clear idea about the BMT option.

-Narendra

Hello,

We discussed BMT with our doctor and may be meeting with BMT team soon. My daughter is only 3 years old and I am seriously confused if BMT is a real choice for her right now or should we wait a while until complications related to BMT are reduced or stem cell transplantation is available in future. Any thoughts or advise can be helpful.

Regards

hello Canadian_Family,

The requirement for BMT is a HLA(Human Leucocyte Antigen) match of your daughter with a donor(maximum possibility is with a sibling). do you have any other kids? If so there is the best chance of your daughter's HLA to match with her siblings.

HLA match is the first step for BMT transplant.

Also, I think the sooner the BMT is done the better it is. My niece's daughter had suggested to have a BMT after 2 years. The lesser the Blood transfusions, the better it is(this is what the doctor said may be due to iron overload)

-Narendra

Yes lily
          i've been in italy for the second time for bone marrow transplant but this time we use the second protocol ..
          the first operation was in 2002 the Dr. used the BMT but there is no succesful he got a rijection  and as you said maybe it's not enough cemotharapy or there is stell some old cells take over the new cells after the Dr. stop cemotharapy..
            Dear lily i know  how it's very difecult to think a bout the second operation for your child.
 may be you ask your self how come i think a bout it and how come i went there and how come i eccept to do this operation belive me lily even i don't know you i know what you think a boutbut am going to tell you what i did ... maybe what am going to say it now maybe just my BIG BROTHER ANDY he knew it because he was with me all the time by phone or by MSN ...
            I know how you think as a mother and as a father i know how much you scare belive me that what happened to me exatly .  Mars 2005  i found a massege from Dr.paola polchi who she write that i have to come to italy in MAY second 2005 i was shaking from my feet up to my head . what you should do if you have same situation i start talk with andy regard it and i start thinking a bout my son who is very smart he  have fast thinking some time he make me can't answer him because i have no answer ...
             Dear lily i want you to think with me .... how long you are going to stay with this problem (may be sombody don't like to call it problem but for some family it's big problem)  you have two doors
1:KEEP YOR CHILD ON TRANSFUSION AND DESFERAL FOR ALL HIS LIFE.
2:MAKE THIS OPERATION AND ACCEPT ALL THE DANGER AND THE SUCCESS.
     YOU DON'T HAVE ANY CHOICE
           Maybe you ask your self how come you make it ?
            i'll answr you after you think a bout what i said
                         RED_PILOT KHALIFA 

Dear lily
          as i told you i hop you thought a bout what i said in my first msg. belive me lily i was suffering in that day i wished the GOD take some from my life to gave it to my son . oh my GOD what am going to do for this small boy oh my GOD. i need help i need sombody guide me to the right way . what a bout if i lost my boy he is my life he is my eyes i don't want to loose my sight  he is my air who i breath without air i can't survive he is my feeling he is every thing even i have 4 child after him but i don't have the ablety to loose him . why should i take him to italy for BMT let him stay like that with blood transfusion and desferal why should i put him in a way i don't know when and what will happened in the end too much quistion start to come to my head i remembar am prebaring my self that night to sleep and i was very tired but after i saw the msg from Dr. paola the tired ran away from my body my eyes said to my body hey wake up your son in your disicion what are going to do.   sudenly i open my MSN i found my BIG BROTHER ANDY i discuse with him what i saw in my e-mail after that we deside to go through the procedure actually i woke up my wife it was one o'clock after midnight kuwait time i start discuse with here also we see that we have to go through this way what the GOD choice it for us... as i told you i have two doors 1:keep him transfuse all his life 2:make the BMT ... but my boy is very clever since he was five years old start asking me why my sister don't take blood like me why my friend don't go to the hospital like me every month too much WHY  WHAT  WHERE  HOW . this boy going to give me a real head ach in the feuture .i don't want him to come to me one day after he crow up and telling me WHY YOU BRING ME TO THIS LIFE some peoble blame the parents i saw some cases here in kuwait and even out side of kuwait.. so i dicide to make it that is't  but it's very hard and dificult choice ....
            lily the life and die on GOD hand not on my or you or any body in this world but we still humane have a feeling but some time you must  take a way you don't like to go through this is the life it's not easy it's need a challenge fight ....
            so when i arrived italy we start the new protocol not like what we did in 2002 Dr.polchi told me we are going to use PBSC PREPHERAL BLOOD STEM CELLS the chance for successful is very high but the risk to have GVHD GRAFT VIRSUSE HOST DIS. also very high i ask her why you don't use BM even the donor is same she told me we prefer another donor in the second transplat but we don't have so if we are going to use the same donor we are going to use PBSC because the body of your child recognise the BM from his sister the chance to have rejiction is realy high.
       Deuring  my staying in italy i have two case is die a five years old girl died after BMT but she had very very very bad GVHD the second case 16 years old girl die after BMT and PBSC also she had the second transplant but this poor girl have problem her body refuse any thing no BLOOD no PLT nothing nothing nothing  the Dr,s did the imposeble thing to let her survive but the GOD wishes is more strong than us ... before one week one of my freind call me from italy he told me a girl 13 years old died even the BMT is success but she got a brain canser when i ask one my friend he is a doctor he told me because the imunety of the body is too low some hummen have the abelety to have cansers.
     lily i think the GOd and am very sure the GOD suport me with a help from my friends who they pray for me and for my boy thank you god  thank you all freind who suport me ...
                           THANK YOU ANDY
                                   RED_PILOT      KHALIFA

hi khalifa,

thank you so much for all your advice.  only a parent of a thal major can understand the agony and fears that we go thru.

i would love for my son to be disease free, and have a chance to live a healthy life.  unfortunately he has a severely damaged liver as well as diabetes, so im not sure if he would be a good candidate for a 2nd transplant.  however it is something that im diffenetly going to discuss with his doctor.  he's almost 18 so i know that that also, may work against him.  he's had a lot of health problems thruought the years.

im pleased to know that your child was able to get a 2nd transplant.  how old is your child?  did he have any serious problems prior to the 2nd transplant?  how is he today?

i have a lot to take into consideration.  next week we go to see the doctor i will ask about the possiblities of a 2nd transplant and take it from there.  i dont want to start struggling with the decision yet without knowing if its even possible.  i will keep you posted.

best wishes to you and your family
lily

Dear lily
         as i told befor my son when he made the first BMT was 7 years old the second he started when he was 9 years and half he finish it when he was 10 years and half i thing you didn't read my previous MSG he had three serious problems first one: coma second :also coma thaird : bad GVHD but his condition when he start the operation is good no lever problem no high feritain almost 900 i sugest you descuse your son problem with real experiance Dr like Dr.paola polchi .. her E-mail : ppolchi@hotmail.com
        contact her and find out the posibilty to how cure your son if you want her contact number i can gave it to you if you want it..
         call her diuring office time 00390620902698 or 00390620902708monday to friday
       by the way i forwored to her your topic and all descusing regard this topic ...
                                               khalifa // RED_PILOT

hi everyone,

yesterday we had our monthly transfussion day.  i spoke with my son's hemoc  regarding a 2nd BMT and he states jonathan is not a good candidate due to the fibrosis stage of his liver.   i also inquired about the squid testing instead of liver biopsy and again squid testing is not viable for him because of the fibrosis.

jonathan is scheduled for his next liver biopsy on aug 28th hopefully he liver continues to improve as it had at his last biopsy. 

take care everyone,

lily