Yes. Very surprised and very excited. Being diagnosed in 2000 was still in
the time when not everyone was so optimistic about Gleevec (then called
STI571- which was the trial name)
Professionals all pushed and pushed me towards a BMT. I actually went
through the whole work up but all the while researching what was going on in
the trials and hearing first hand from many of the wonderful people here on
this list the great results. Even with rare HLA and no siblings found to be
a match they found 3 excellent donors for me. But there were other things
for me to consider. Different facts about my life and my status that made me
decide against it. Not everyone makes the same choices for the same reasons.
It was a very scary choice but hindsight I and my doctors are very glad that
I chose to stay on the other drugs and wait for Gleevec approval.
We tried to get me in the trials but nothing we tried worked.
The other drugs I took for the year while waiting were so much more toxic
and horrible compared to Gleevec and although they put some in remission
they just pretty much kept my CML stable. Good thing I think is like your
Daughter my WBC was only 70 some thousand. That's pretty low considering
Some of the others and their counts at dx. Maybe that has something to do
with how quickly on responds? Not sure that topic has never come up here?
When the doctors and I found out the good results after only 60 days there
were tears of joy from everyone.
Recently I asked them if they would have made the same choice I had if it
were them? Because they feel comfortable answering that question after a 5
year relationship with me, the answer was: Back then, I don't know... but
probably not. Now, after seeing all the progress and knowing what we know
now, I would have hoped I made the same choice as you did.
My one Oncologist whom I have a much closer relationship with than the Large
center doctor - has told me on many occasions how my decision had changed
him and his way of practice. Encouraging him to grow and have more hope and
the technology of today. He never misses an ASH conference and stays on top
of everything going on where as before he cared for patients and just did
the best he could. Now he gives his all.
Sure there are days when I worry about tomorrow. But I feel I have
alternatives now with everything else in research. And to be perfectly
honest... I would do a trial in a heart beat rather then take the BMT option
first so that children like yours would have even better chances at
survival. Whether I made it through or not. I would try for the sake of
others. Just as the others had done prior to the availability of Gleevec to
all of us now.
BMT for me will always be a last resort. Yet I admire the others who haven
taken that route as well. Even a BMT is not what it used to be. There has
been so much progression that I believe everyone with Cancer has a lot of
good to look forward to.
And if one day I have NO other option than a BMT- I would do that too.
Message: 13
Date: Tue, 10 Jan 2006 08:58:19 -0500
From: lisalongkennedy <[EMAIL PROTECTED]>
Subject: Re: RE: Early PCRU
Thanks so much, Lisa. I hope your PCRU continues indefinitely. Weren't
your doctors surprised that you reached PCRU so quickly?
Lisa
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