Hey everyone!! I definately don't mean to sound angry!! I am happy for everyone and I wish this stupid disease would be gone.
My main point is never to eliminate any of your options. Nothing in this world is 100%.
I enjoy posting here and helping people to understand the BMT option.
It is not the be all save all. I have suffered side effects from my procedure.
I am not anti-gleevac. I just urge people to get their relatives tested and entertain it as an option!!!
I really feel terrible hearing the stories of people that have passed. It seems there are so many.
But there are many of us still around and kicking :-)
I am not the only source for BMT info :-) lol
The Leukemia and Lymphoma chapter in your area can provide valuable ifo on BMTs. The patient services coordinator will help you!!! They can also provide some financial help and suggestions with respect to money if that is a concern. I still have bill collectors suing me....5 years later!!!!! But I am here...so screw them!!! ( pardon my language )
Just as an aside.....the total of my treatment...BMT start to finsh - over 1,000,000!!!!
Unbelievable!!!
Hope to talk to you all soon!!!
Mike
hey00nanc <[EMAIL PROTECTED]> wrote:
--- In [email protected], M <[EMAIL PROTECTED]> wrote:
> Also, and I must be crazy....I wanted to go the more "curative"
route than the treatment route. Is Gleevac safe to take for 50+
years?? My doctor said...."we have no idea".
>
> He did say that survival rates for a perfect match BMT in someone of
my age(24) and relative early stage of CML was better than 50%.
>
> I believed him. THank God I did. My point is that you should
explore all your options. If you do have a perfect 6/6 match...and
you are in the early stages of CML..and you are young......A BMT is
still your best chance of a "CURE" The long range side effects of
Gleevac are unknown. It just bothers me that people are only looking
for the next trial of a miracle drug. If you fit the profile...you
should be looking for your perfect match donor. I also fear that the
Marrow registries will suffer due to these miracle drugs. Thats a
conversation for another time.
>
> I stand by this. Even though a severe majority of this group do
not. I will continue to be active on this site provided the "other"
perspective!!!
>
> MikeMike
_________________________
Hi Mike,
I am glad that you are posting on this list to tell YOUR story about
your successful BMT......I am glad that you are alive, not suffering
from bad GVHD and have not relapsed.
When you look at the 'whole picture'.....all these options are
possible and that is what anyone considering a BMT needs to
understand. It is TOO EASY for a BMT center to say that this is "the
cure" when we know it has not been a cure for many. We have several
post-BMTers on the list who relapsed and are now on Gleevec.
We also have close friends who did the BMT option for various reasons
and did not survive.
Even your doctor gave you odds.....you said something above 50%....he
did not say 100%! Of course you are happy about your BMT because it
went well and you are now healthy......would you be singing the same
tune if you were dead, had bad GVHD or had relapsed.....obviously not.
My point is....people are happy for you with your good outcome, but it
is not the full picture of BMT possiblilites.......and when people
present the other side of the 'coin', you need to understand why.
And again, we want you on the list.....we need someone to represent a
good BMT outcome.
Nancy c.
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