Some time has passed since all of you were writing about
Nightcrawler's issue. Maybe you have more info to share with me. I'm so
happy to be talking with Suzzie, who evidently has been using Gleevec a
long time.
I'm new to Gleevec and already have run into blood counts so low
that my doctor has interrupted the treatment (yesterday). He says that
I am in a small group, less than 10% of CML patients on Gleevec, where
the "stem cells seem to be involved in the BCR-Abl gene" so the Gleevec
is working too fast. He's hoping that I can resume the gleevec at 400mg
after a few days.
Does this sound reasonable? Has anyone else had
their wbc count drop so dramatically in the first month that Gleevec
overshot the target? I'm nervous that I won't be able to use this
miracle drug. cmlsam3
On 4/28/2008
Nightcrawler76 wrote:
On 1/20/2008
Suzzie59 wrote:
On 1/14/2008 Nightcrawler76 wrote:
Its
been a long process since the last time that I posted a message. I have
been on 100mg of Gleevec for a few months now after starting out at 400
then down to 200 and finally ending up at my present dose. However now
i am having pain that is growing in intensity as well as areas affected
and frequency. Is this caused from needing to up my dosage or what?
Please let me know of your experiences.
Hi:
I am a little confused with the way you are being given your doses.
400mg. is your base dose. I have been on Gleevec 400Mg. since
2000, and I saw the best doctors around in N.Y. during the clinical
trials of Gleevec. The one thing I was told was that I would not
be dropped below 400mg., but that I might have to be increased.
Thank God it did not happen. Please get a second and even third
opinion. You mention pain, but your not saying where. Some
of the side effects are joint pain. I had a lot in the beginning,
but as Gleevec does its job and kills off the cancer cells, and your
working your way to remission I feel it lessens in time. You may
experience foot cramping, or swelling in your eyelids. You do get
aches and pains, but nothing you cannot deal with. May I ask why they
keep adjusting your dose. My oncologist keeps close watch on my
numbers of my WBC and my RBC. I did become anemic also with the
Gleevec, and I get very cold all the time. All I can say is that
the side effects are worth it as long as Gleevec is doing its
job. I would like to converse with you
anytime. Suzzie
My
Doctor kept changing the dose because of the pain I was experiencing
cause it was mind numbingly bad in the jaw at first then as days went
by it traveled into my arms and back and even my thighs which is saying
something about the pain if I can feel it in my legs since I have
little sensation there due to me being born with Spina
Bifida. My original dose or base dose was 400mg and he slowly worked it
down to 100mg until recently when a colleague of his informed him of
what you said about Gleevec so he changed me to Sprycel, not sure if
that spelling is correct. Which seems to be working for me. He changed
me to this new med because the Gleevec was not doing exactly what it
should, it was only doing half the job. I think he said that it was
getting rid of the mutation that occurs with our condition, but wasn't
allowing the body to make new ones. However I might have my facts mixed
up it happens occassionally.
also I noticed you mentioned getting
cold often. Is that real common with CML? Cause I have thought back on
it and it seemed that I went from being a person who could go out in a
t-shirt on a 50 degree day or sometimes even colder to being
one who thinks thats very cold now and I have to bundle up... to me
that means having to wear a jacket. Which is very unlike me. Anyway
thank you for responding to my last message and look forward to hearing
back from you about this one.
Nate