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If he could not tell you anything about the mutations you have I think that
would be at the top of the list of things you need to know before you can make a
good decision about a BMT or one of the clinical trials. You need to know about
the mutations in order to know if either the BMS or AMN trials would be
good options. If you go to M.D. Anderson they should be able to give you a good
analysis of what the best treatment direction would be for you.
If the BMS or AMN trial would be the best treatment option for you it
might be possible to get into the trial in Texas now and then later
transfer back to a trial center such as Nashville. The BMS trial has Nashville,
Lexington and Louisville, Kentucky, and Birmingham, Alabama all listed as trial
locations so one or more of those locations should be open within a few
months. If you need to do something now you might not want to wait until
the trial centers in AL, KY, TN open.
Rob
----- Original Message -----
Sent: Wednesday, January 26, 2005 1:36
AM
Subject: [CML] Pat's Update/BMS Trial
Issues
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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