Hello to Everyone, I apologize for not posting more
but the increase to 800mg has me really dragging, and
I've been suffering with a pretty severe kidney
infection among many other little things too numerous
to mention them all now.
To refresh everyone's memory, I have never had a good
response to the Gleevec, and I am now on 800mg. I
called this number for the BMS trial location in my
area, which also asked me for my zip code, and was
told there was not a facility recruiting in this area
YET and for me to discuss it with my oncologist. I did
that today at my appointment, and he went and
discussed it with some of the other doctors, and told
me that Vanderbilt would "probably" be conducting the
trial but it wasn't guaranteed yet, and "If" it was,
it could be months, 3 to 6 months or longer before it
got set up or maybe not at all. I told him I didn't
mind waiting but would he please just help me get in
when it did get started. He explained to me that I had
been on the Gleevec for a year now, and if the
medicine was going to work at all, it would have by
now and that I am progressing rather than getting
towards remission, and that I can't put off for
another 6 months making a decision, I've either got to
get in the BMS drug trial SOMEWHERE NOW (other than
waiting on the one to get to my area) or have a BMT.
He expressed it as though I might not have six months
left to live, which has me in such a state of panic
and fear. He is going to call M D Anderson and consult
with them to see if I could get in there and soon. He
basically told me to go home and make preparations to
get things lined up for relocation for a few months or
to prepare for BMT. I won't have today's blood work
back for 2 weeks to know if I've improved or backslid
again. The entire time I have been on Gleevec, tests
show one month I have improved, and then two months
later, I have went backwards again. To give an
example, and btw, none of my tests appear written or
expressed as most of everyone's else's I've noticed:
4-15-04 6000 cells containing BCR-ABL were found;
5-19-04 BCR-ABL positive for 1100 cells; 6-02-04
BCR-ABL positive in 149 cells; 6-24-04 BCR-ABL
positive for 368 cells; More recent 9-04 BCR-ABL
positive for 764 cells; 11-04 BCR-ABL positive 3,168
cells which at this time dosage was increased to
800mg. Has anyone who has been slow to respond to
Gleevec, did you fluncuate like this? As if all this
information didn't make my day, my oncologist informed
me that he would be leaving the end of February to
take a clinical director of BMT services at the
University of Michigan, so I will be assigned a new
doctor. I was told to call in for an appointment as it
was undetermined as yet who I would be seeing, and
perhaps I might be in a clinical trial and not need an
appointment back at Vandy for several months. If
anyone has experienced such a response with the
Gleevec, please email me privately and explain to me
if yours are even somewhat similar. I got my medical
records today and I am going to be sending them to Dr.
Druker right away as this is what he advised me to do
when I got them. I'm also going to call MD Anderson
myself. I sure had my hopes up for a trial location in
my area which I'm almost certain will be Vanderbilt,
as they do a lot of clinical trials and research, and
it is a teaching hospital. I had been told previously
that I have more than one mutation so today I asked
what was the name of the mutation and he studdard and
stampered around and told me, he didn't know. Is there
testing to determine which mutation you have? And if
so, why wouldn't he have done this already? This was
one of the questions Dr. Druker asked, which mutation
I had and I couldn't tell him and still can't. Please
if there is anyone who has been through what I'm going
through with their response to Gleevec, please don't
hestitant to contact me and any opinions or
suggestions anyone has to offer please speak up. I'm
literally terrified, again and I really could use
everyones' support, and knowledge. Thank you all for
being here for me. Love, Peace & Hope, Pat
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