Hi Germaine,
I have read many of your post over the past few years and I almost recall
you stating once that you had a deletion of another chromosome? Is that
right? Sorry if I am confusing you with someone else???
I ask this just so we can get an update of what your recent test results
were.
Have you ever reached a cytogenetic remission by FISH test?
Have you reached Hematological remission? This means are all your blood
counts ok? Particularly the white cells?
When you go to your visit to discuss options what I would strongly recommend
is that you take a hand held recorder with you? This helps because you can
listen to the answers again later and get a better understanding. You can
also post them to the group and you'll be surprised at how much more you
learn so quickly...
I also made a written list of questions to take with me.
In 2000 after being dx'd my doctors were pushing for a BMT and mostly
because Gleevec was do new at that time they were still stuck in the old
fashion option which was BMT.
If you still have more questions after the visit, schedule another.
I ended up having 4 consultations with my local cancer center just to be
sure I covered all the questions and answers, all while being prepped for
unrelated BMT. Don't be afraid to do this... it's your life and you are the
only one that can make the final decision for what treatment options you
want to pursue.
Finally "I" decided to stay on ARC & Interferon until Gleevec was approved.
Glad I did :) Those Doctors who were so afraid of the unknown then and NOW
they are so ecstatic about my continued good results.
Each has personally told me what valuable lessons they've learned working
with me and have even asked for my support from time to time.
Hope this bit of information is helpful....
Lisa Martinez
Dx 5-2000
Arc/hydrea/interferon
6-2001 Gleevec 400
8-2001 PCRU
Zavies club # 111
I have been a quite member of this board since I was diagnosed
October 2003. I have always looked to the board to help with questions
I may have. Here is my story....
I was diagnosed in 2003 with cml philadelphia positive. I was put
on Gleevec 400 mg right away. In May of 04 the doc upped my Gleevec to
800mg. I have had bone marrow biopsies every 6 months. Well my last
bmb was on Nov 2. The results were that there was no evidence of the
leukemia except for the philadelphia chromosone. Now I am wondering
what do I do now? I have been on Gleevec for 2 years and haven't hit
remission, so I wonder if I ever will. I asked my doc if a bmt would
help me hit remission. I have an appointment on Dec 5. I have no idea
what questions to ask. I am not that fluent in all the terms of
leukemia, so can anyone help me. My family doesn't think a bmt is what
I need they think that since the gleevec is working to an extent,
there theory is why mess with a good thing. But how come I haven't hit
remission yet? I am sooo tired of sitting in limbo. I just feel like
I have to explore all my options. Does that make sense? I live in
Brunswick Georgia and my appt is with Emory Hospital in Atlanta. The
doctor said i need to have a bunch of questions to ask the specialist.
But I am not sure what I need to ask.
I have no siblings. I know that is important. What should I do?
Thank you to everyone for the guidance I have recieved, I look forward
to any advice anyone has to give.
Thanks,
Germaine
age 28
dxd oct 2003
gleevec 800mg
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