I've had to think about this for a few days to decide what I would say in regard to why we haven't gone the transplant route with our son, Tony. He was diagnosed 4 years ago at age 12. Gleevec was new then, and everything looked very promising with its results. I read everything I could get my hands on about cml, transplant, and Gleevec, as well as "natural and herbal" drugs. It was the most difficult decision my husband, Steve, and I have ever made deciding which route to go with Tony. The bottom line for us was the mortality rate of transplant - 70% survival rate. Well, a 30% chance of my beloved child dying is just a bit too much for me, when there was a new drug producing "miracle" results. We decided this would hopefully buy us time, which it did, until new and better drugs became available. Tony's only sibling, our daughter who is two years older then Tony, isn't a match, adding to our worry about transplant. 5 years
post transplant, alot of people haven't survivied, and if they did do well, they are unable to have children. I realize that is not the most important thing when you are facing a life/death situation, but being able to have children is still a huge factor to consider. I honestly don't think there is a right or wrong decision - each family has to decide what is the best way to move forward for them, and then not look back and second guess yourselves. Even with Gleevec failing Tony this past May, we still feel that translpant is the last resort. He has moved on to Sprycel/Dasatinib and it is working new miracles for him. If this can keep him going for another 4 -5 years until there are another new group of cml drugs, then Hallelujah! Many families have the decision made for them, when other things become factors, and then transplant is the only option. Others feel this is the best way to move forward, and for them it is. We don't know t
he long term results/complications of taking Gleevec or Sprycel long term, and this is frightening too - you just have to do what you believe in your heart is the right thing for your child.
-------------- Original message --------------
From: "Suzanne" <[EMAIL PROTECTED]>
>
> Cheryl-Anne
>
> If I knew then what I know now I can honestly say I'm not sure we would
> have made the same decision. The transplant route is a double edged
> sword. Adam is about 1.5 yrs post MUD BMT. He still has good weeks
> and bad and I'll agree with your daughter that self esteem is a huge
> issue. Due to steroids his weight ballooned and now he hides under big
> clothes. He still has no hair and gets very annoyed if someone asks
> him to remove his hat. He's accepted the fact he can't wear one in
> school. He still takes, on average, 18 pills a day. I read stories of
> other children who are either on Gleevec or have moved on to newer
> drugs and I wonder what if. I also read or know of some who hav e
> absolutely no difficulties post transplant. Whose to know. Only God
> can see our future. Anyway, that's my two cents worth.
>
> Suzanne V.
> Adam's mom
> dx'd CML feb/04
> MUD BMT feb/05
> www.caringbridge.org/canada/adam
>
>
>
--~--~---------~--~----~------------~-------~--~----~
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups "CMLHope" group.
To post to this group, send email to [email protected]
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at http://groups.google.com/group/CMLHope
-~----------~----~----~----~------~----~------~--~---
