Hi Rien, I started a study the first week in Jan. 2000 at Northwestern
Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They
changed it later to 300 mg because of the Gleevec rash. I got sick in 2009
and stopped Gleevec for 26 days because of sinus infection and the Doctor
at home put me on an antibiotic which made me sick so I stopped for those 26
days.
Then I started up again and had my blood work done at Northwestern
and started on a trip out west. My Cancer Doctor called me while driving and
said," David your blood work showed that their are cancer cells back in
your blood". I told him remember I quit for 26 days and he replied that's
right I forgot, did you start Gleevec again I told him yes and he said " well
if it worked before it will work again and hung up and I never heard from
again. I later received a letter from him that he moved on to a different
Hosp. in New York, NY. and that was the end of that.
So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago
to get my blood work see my new Doctor pick up my drugs and be on my way
home. But instead I was told their no longer a study and you won't be
getting the drug any longer. That took my breath away. Before I left they
then
told me that they changed their mind and would give me the drug and 7 month
supply and would sent the rest later because they were short on Gleevec..
Last week I received a call telling me that for me to receive the drug
that I would have to fly in every 3 months, that's not going to happen with
the cost of flights, car rental, etc., not with my income at 78 years old.
They called me last week and they are suppose to have a meeting and let me
know.
When I started this study their were 8 of us out of 200 people nation way
and that I would receive the drug STI571 for as long and I could tolerated
it or stay alive. Well that changed. I am waiting for a phone call and
I'm afraid it's not going to be good news, So, my question is should I take
a chance and stop the drug and get blood work in 3 months and see was
happens with my blood count? I am a basket case waiting to see what happens.
If you have some answers please let met know.
Thank you,
David (greenie) Greenberg
South Fort Myers, Florida
In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time,
[email protected] writes:
Hello!
I stopped taking Gleevec after 13 years. I had my checkups every month,
but only in the first year. In the second year every two months and from now
on every three months for the rest of my life.
It seems that everybody reacts in a different way. I myself had more
bonecramps after having stopped than while taking Gleevec; but after the first
year it gradually went better and now I have these cramps only a few times
per year during the night. The swallen eyelids completely disappeared and
unfortunately, my face became a lot thinner. Another side-effect: my hair was
not grey anymore after havinig stopped, it is still dark, which was not
the case before. After all I am glad that I took the decision, the problems
of the first year will disappear, so I strongly advise you to do like I did.
Feel free to contact me for further information.
Greetings from the Netherlands - and let's be grateful that Gleevec
exisits!!
Rien
2017-08-05 19:18 GMT+02:00 Vivi <[email protected]>:
After seventeen years on Gleevec, and considered "in remission," my
oncologist asked me if I would like to stop taking Gleevec.
At first glance, this sounded spectacular but then she said:
"you'll have to come in once a month to be tested."
After deep thought (about twenty seconds), I said, "Talk to me about this
again in ten years."
Has anyone else stopped taking Gleevec after years of being "in
remission?" If so, how's it going?
What has changed in your life? Have any of the obvious physical
side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids,
abdominal fat) retreated or been reversed?
I'd appreciate any information other CMLers might have.
Best to all.
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