Hi Scott,
I agree with you about the level of dosage. I have been taking 400mg's since day one and it put me in remission in a month. I know sometimes maybe certain patients might have to take higher doses, but it does seem allot of people may be given to high of a dose at first. I am not a doctor but I would try the lowest level possible before giving some one 600 to 800 mg's.
I am very sorry to hear about the problems you have with your heart, and I wish nothing but the best for you my friend,
Terry
On 10/25/06, skiwat <[EMAIL PROTECTED]> wrote:
Anjana wrote and posted;
Hello Avis,
I have been noticing this worry about heart and echo cardiograms in
all your posts. Well, recently, Dr. Cortes and Dr. Kantarjian had a
teleconference for CML patients (did you listen to it? The details on
how to register was posted on this list). Dr. Kantarjian specifically
said that they are not doing echo cardiograms regularly for CML
patients
and do not even recommend a baseline echo. He said they looked back
over their records and out of 1300 patients on Gleevec, only 5 had
congestive heart failure. So, the incidence is extremely rare.
Moreover, Dr. Cortes echoed this and one CML patient specifically asked
two times whether she had heard right, no echo baseline and yes, said
Dr. Cortes, no echo as baseline. Just giving you some feedback on what
two CML experts from MDACC had to say on heart issues with Gleevec and
in the hope that you and Dona will be reassured.
However, the doctors both said that those with cardiac issues like
diabetes, hypertension and heart disease, need to have a baseline
echo cardiogram and be monitored. I do not understand why you say
Dona's blood counts dropped, the LDH is high, not low. Hope you and
Dona find a solution with her CML expert doctor.
Since our doctor has not said one way or another whether to do an
echo for my hubby, he has been on Gleevec for 4.5 years, I will
feedback Drs. Cortes and Kantarjian's views to our doctor. I was glad
to see doctors giving a number to the incidence of heart problems on
Gleevec, it seems the MDACC experience is a 0.4% incidence of CHF with
Gleevec patients which is below the normal incidence in the healthy
population. I was certainly reassured. Hope you and Dona are, too.
Anjana
caregiver to Roy
d/x Jan 2002
400mg Gleevec, March 2002
CCR, Sep 2002
Hello Everyone,
I hope this message finds you all feeling well.
I feel the need to respond to this posting. It has only been 2 weeks
sense I had to have surgery for damage done to my heart while taking
the Drug Gleevec. I attribute the damage to 5.5 years of treating my
Leukemia with the Drug Gleevec.
I first heard about the news that CHF can be caused to the heart from
the Drug Gleevec back in June of 2006. I worried because I just had a
feeling something was going wrong with me. Something that was coming on
so slowly that it was hard for me to even see. It seemed like I felt
less energetic then I thought I should. Laying down and not moving and
I would still have the feeling that I need to catch my breath. Nothing
had a real pattern so I felt it was still just the Gleevec Side
effects, (just like: my gut hurts all the time, {must be the gleevec} I
have a rash that wont go away for 5 years {must be the gleevec} nothing
taste good {must be the gleevec} every thing seems blurry {must be the
gleevec} my skin has lost color {must be the gleevec} {I cant remember
the rest, must be the gleevec). I got so tired of IT MUST BE THE
GLEEVEC that I just stoped complaining. I told myself that " how
thankful I am that I have gleevec to save me from chemo therapy."
WELL!!
I'm still thankful for the Drug Gleevec. It is a better drug then Chemo
therapy, in my mind. I had 5 wonderful years of feeling for the most
part very good, and if I had still been on chemo therapy for them 5
years, I can only imagine what a sick puppy I would have been.
However, to all this I have two damn things to say.
First, I feel the doctors need to use the Drug Gleevec the same.
Explane why one person takes 100 ml of Gleevec each day to hold there
remission, while another continues to take 3 4 and 6 hundred ml of
Gleevec each day after reaching remission. Its been proven that Gleevec
causes damage to the heart cells in laboratory's. It don't take a
freaking scientist to see that the longer, and the more Gleevec you
take the more damage your heart will receive. This only happens in 0.4%
of one some small group somewhere, this may be true, I respond to that
with "so far". I know Gleevec is still a new drug and there is no known
long term information on what Gleevec can do. 0.4% is enough for the
Food and Drug administration to put out a warning of CHF to people who
take Gleevec when the Medication is sold. Not to mention that being
stuffed into a group of 0.4% really dont feel so good, those of us in
this little group hope that none of you join us. (smile)
Secondly, I am so very thankful for my Onc. Doctor Weeks here at the
TriCities Cancer Center in Washington state. The last time I saw him I
just mentioned that Gleevec was reported to cause heart problems, he
responded with yes he heard that too, and was very disappointed to
hear. I then went on to tell him of my worries and mild feelings. He
did a office exam for any signs of heart problems and found none. He
told me I was very active and healthy, but only way to check for sure
would be to have an echo cardiogram. (painless test) Well he made an
appointment for me the next day for the test, witch I rescheduled for a
week later so I could get in some more fishing. See I really didn't
think anything of it either, thought all we would see is a 45 year old
heart working away as it was supposed to.
The test showed that my heart was only working at 10 to 15% of normal.
I then had no choice. I had to have a defibrillator put in, sooner the
better. They wouldn't even let me go back to my truck to put my things
in it. What I'm trying to say is that if anyone is worried about
Gleevec and CHF. Get the test! for you and nobody else. If your Doctor
gives you grief, then shame on him.
I'm sorry I stepped on anyones toes.
Scott Anthis
dx'd June 2000
400ml Gleevec June 2001
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- [CMLHope] LDH ~ follow your heart! skiwat
- [CMLHope] Re: LDH ~ follow your heart! Terry Dailey
- [CMLHope] Re: LDH ~ follow your heart! anjana
