- BMT

[Guest guest]

> > Hello everyone,

> >

> > I am so glad I made that post yesterday. I wasn't looking for a response at

all. I was just trying to let someone else know what my family went through/is

going through. 's doctor seems to be taking a stalling tactic hoping

will change her mind rather than refusing the BMT. has already

had at least one consultation with a BMT team. I will surely send all of your

replies to her and try to convince her to let the Gleevic do its thing. I have

already tried convincing her to stay on the Gleevic, but not with much luck.

Maybe after she sees everyone elses posts she will reconsider.

> >

> > Thanks alot to everyone for your concerns and very helpful advice.

> >

________________________

Hi ,

Knowledge is power.....

She should consult with more than one BMT team (Seattle is the best) and

specifically ask:

what is your survival rate? for one year? for 5 years? in my age group for my

dx;

what are the possible graft vs host problems that came come up post BMT?; how

long are you on medications for the transplant post BMT?;

The problem with some BMT centers and the advice that they give is that that is

their bread and butter and how they make their money (a BMT will cost in the

neighborhood of $300,000 without complications.)

The HUTCH in Seattle, the best transplant center in the US if not the world, now

recommends that CML patients try the drugs before considering a BMT and if the

drugs are working, a BMT is not indicated.

It is nice to have sibling matches (keep them in your back pocket if

needed).....but sometimes these transplants are not as successful because the

match is too close and the new immune system does not kill off all the cml

cells. These patients relapse at some time post BMT, and then they are back on

Gleevec! I know of 2 such patients on the cml lists.

The possible post-BMT graft vs host problems can be significant and many. After

a transplant, you may be leukemia-free but you can have many debilitating

problems related to having the transplant. Like sterility. There is a 20 year

old boy who had his transplant (which was recommended by a specialist at the

time because of his response to Gleevec, the only drug available then)....he was

treated with prednisone for problems after the transplant and the prednisone

destroyed some of his bone (avascular necrosis) and he has had surgeries on both

knees and now may need surgery on his wrist.

I can imagine that at 19, it can sound story-book to have your sister give you

her marrow and cure you of leukemia.....but it is most often not that simple.

Your daughter needs to sit down with a BMT team that will spell out honestly and

clearly what problems could lie ahead. Her local oncologist is not able to paint

that picture. AND she can read some of the accounts of people as they went

through a transplant and see how it went.

I was dx 11 years ago when the choices for treatment were few....interferon or

BMT...then Gleevec came and changed the whole picture. My early friends who have

not survived have mainly been the ones that went the BMT route, either by choice

or out of necessity. One good friend contemplating a BMT (of out

necessity...because the only drug was not working for her) said to me: " we know

more people who died of a BMT than from CML " .......unfortunately she did not

survive her BMT (she never really even got back home) and left a husband and 2

young children.

She needs to have the full picture....and not just wishful thinking. We all want

to be cured.....but right now, for most of us the meds are the best option.

C.