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Guys,
I've not been in touch in a long time but I've read this list
since 1999. I'll offer a bit of a re-introduction, since I know the
members have changed and the membership has grown. I always tell people
about the list, but hesitate to participate. I work a lot and don't like
to feel like I can't keep up with everything here - and would hate to not
respond to someone when I need to. I will say, please let me know if you
need anything from me - and don't hesitate to send a reminder should I not
respond (I do think my memory is very bad - and I'm more than content to blame
it on the drugs). At any rate, I'm now 38 - diagnosed at 32 - a year on
Ara-C and Interferon - and then the STI Phase II trial at OHSU. I still
see Dr. Druker every six months. I've been on Gleevec since June 26 of
2000. I now take 600mg daily and I've kind of ping-ponged around in
responses. My FISH has always remained positive, thought I've had negative
or undetectable PCR results at times. I used to worry far
more than I do now - as I'm becoming a fairly predictable patient -
though my results are back and forth (detectable - undetectable) I'm very
stable. My WBC is always low; my anemia worsens and improves, but never
goes away; my eyes are chronically puffy; and I'm always cold and wish I had
more energy. While that may sound pitiful, I'm extremely
satisfied. I'm very excited about the new drugs in development and can
testify to the difference between then and now. I will never forget the
horrible chemo/interferon days - when I was so very sick and enduring the
terrible side effects of medicine that wasn't fighting the disease. I know
what a difference this drug made for me - as it truly did save my life.
I'm not a content person, but I'm very happy.
Through my "journey" I've known so many not nearly
as fortunate. I've had friends who have died when Gleevec
didn't work for them. I've also had friends with
extremely positive transplant results. My advice to anyone is to "follow
your gut - be educated and open, and the right decision will
reveal itself." My beliefs are based in my spirituality, I guess -
but I also believe that we each have to decide what our correct
path is. Transplant was not for me -but that doesn't mean that
it won't be in the future.
For anyone that may be interested, I'm in serious
contemplation about trying to conceive on Gleevec and have yet to make a
decision. My age and my previous treatment are obvious complications to
the dilemma - but I'm hoping I'll know what's right sooner rather than
later.
Finally, Kelly Ann - your post inspired me
to write. I'm also in Tennessee and would be happy to offer any
contacts, info, etc. that you might like to have. I'll send my
phone number off-list and you can call or email if you like. The same
is true for anyone here.
Please take care and know that you all are thought of and
cared about by many whom you may never know.
Paige Brown Strong
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