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,  
rien16...@gmail.com 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 <vkrei...@gmail.com>:

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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email: rien16...@gmail.com 



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