Risks of BMT and CBT

We will soon have some expert help to answer these questions. I will say that over the past 5 years, BMT has become a much safer procedure and that the experienced clinics are doing a great job in curing thals.

And what about CBT Andy??

Joyce,
In my experience and the 10 or so children i saw in Taiwan who have been cured by cbt none has the side effects mentioned above.please appreciate that these posts are about 3 yrs old and new developments come up every day!!
my son's hb last month was 12.5...he does have a little hair growth due to cyclosporin but that is reducing as the medicine is tapered and will go away when medication stops in april,1yr post transplant.He is absolutely normal,active ......no delay in milestones is seen or change in appearance or habit..same can be said for other kids.
have faith,be strong....you will feel much better after your visit to Taiwan
you can search sandy lim,elaine lam,mitsuko tai  on facebook,they are all malaysians and can help you with your concerns,have spoken to elaine about you....you can contact them
all the best
aabha

My understanding is that with either BMT or CBT risks include:
Mortality 5 - 20% depending on the whether it is a sibling donor, how well matched it is, health of recipient, age of      
                         recipient.

For the mortality risk in BMT from matched donor, I paste you the FAQ of the Cure Thalassemia site written by Dr. Sodani:
http://www.curethalassemia.org/faq/
What are the results of Bone Marrow Transplantation (BMT)?
The results have substantially improved over the last two decades,due in large part to improvements in preventive strategies,the effective control of transplant-related complications,and the development of new preparative regimens.
The youngest the patients,the better are the results. In low risk (class 1 and class 2) young children in good shape,the thalassemia free is 89%,rejection is 8% and the mortality is 3%.
In class 3 patients,the thalassemia-free is 85%,the rejection is 8% and the mortality is 6%

In adult patients the mortality rate is much higher.

I am not sure if these risks apply to all patients and to what extent they can occur.  Andy, can you help me with this?

This is the correspondent FAQ:
Are there risks,complications and infections after a Bone Marrow Transplantation(BMT)?
First of all,there is a mortality risk,which is significantly lower than some decades ago;it goes from 3% to 6%,depending on the class of risk of the patient,his health conditions and the age.

BMT may not be successful causing a rejection,because of disease recurrence or regimen-related toxicity.

Having said that,in about 30% of the BMTs there might be complications,side effects or infections,and they are managed successfully;they are less frequent than some years ago thanks to a more accurate diagnosis and a higher number of antibacterial. The probability depends on some variables,like the class of risk of the patient and the outcome of the transplant.

Regimen-related toxicity refers to side effects that patients may experience during the course of transplantation. These side effects include graft-vs-host disease (GvHD),bacterial infections,fungal infections,viral infections,gastrointestinal and hepatic complications,neurologic complications,pulmonary complications,and late effects after stem cell transplant.

Infection complications are one of the most serious side effects;in same rare cases there is the fungal infection aspergillus,and if it is not treated well,it could be dangerous.
Conditioning regimens that usually consist of high-dose chemotherapy,radiation therapy,or both,can cause mucositis. Late effects after BMT includes endocrine (gland) problems like hypothyroidism,adrenal insufficiency or growth hormone insufficiency.

Although improvements in conservative treatment have considerably improved the prognosis of thalassemia,disease- and treatment-related complications in these patients progress over time,causing severe morbidity and shortened life expectancy,especially when the patient is not young.

Do patient's appearances completely change after transplant (excessive weight gain, hair growth due to steroids)?  Are these changes permanent?

The FAQ:
All the complications related to weight gain and changed appearance are not permanent, and they are exclusively visible during the time of the therapy with cortisone and immunosuppressive drugs.
The length of these complications is variable, and it could happen that a patient during a cortisone therapy could have permanent problems to bones, joints and head of femur, but it is very rare.