Discussions that mention gleevec

Good Morning,
2 weeks ago my 14 year old son was diagnosed with CML. Of course I went online to see everything there was to see...
Big mistake.
I was told by his doctor that he must have a bone-marrow transplant (he has no full sibs) so we would have to get an un-related donor. (He is currently on 400mg of Gleevec) Now I have been seeing a lot of stuff that says people can live and maybe even be cured w/o the BMT (which I see has a 30~50% mortality rate???)...this is all so confusing. I want to do what is right, and best for my son...any thoughts???


Tena

Tena, it's really great that your son has been started on Gleevec. This is truly a "miracle drug" so far. I know of a young woman diagnosed with CML over 3 years ago and she has been on Gleevec since then and has not required a bone marrow transplant so far. In fact, she is getting married in Oct.! Doctor's do not know if Gleevec works indefinitely nor do they know long-term effects of the drug. (except longer life!!) Good luck to you and your son!! :wave:

i am sorry that your son and family are having to go through this awful disease. i was dx in march of this year. i have been on 400 mg gleevec until last month and my dr upped my dosage. my dr says gleevec is a wonder drug. although my side effects have been awful. my dr told me that the only way i would have to consider bmt is if the gleevec did not get me into remission. which as of yet i am not but i am patiently waiting. i would consider getting a second opinion on the bmt before you went through with it,i have no full siblings either so hopefully i want have to begin looking for donors. good luck

My 11 year old niece was dx with CML on 9/28/04. She is currently taking 600 mg of Gleevec with mim. side effects. She is being treated at Sloane in NYC. She can't attend school and had to have her braces off. Her WBC has dropped - at dx 160,000 now 1.4 - we are not sure if she is in chonic or accelerated phase. Check out the asian CML support group. I have recieved valuable info. from all the people there.

Lynn
NJ

Have lived through the BMT with my nephew, (15). He had ALL and upon 2nd relapse his Dr. felt the BMT was necessary. Luckily his sister was an identical match. Lots of ups and downs - but after 62 days he left the hospital. All counts have been doing well. His first spinal was done last week and it was clean. I do not know anything about Gleevec, and as far as I know it was not considered for his treatment. It is really hard to watch them face day after day dealing with all the side effects of the BMT. But, in the end, you realize what a miracle it is and hope it puts an end to the ALL. The St. Jude site has excellent information - his original team left the Children's Hospital here in Pittsburgh, and went there......