Thank you for the info Susan, hope all is well with you.   I'm still 
waiting for a call from them to let me know what they plan to  do for me.  I'm 
sure I will here from them within a week or so.   I'm hoping for the best after 
over 17 years in their study.  For all you  know I may be the last of the 8 
that started in the study, I asked one time but  they won't tell me. I can 
make it their ever 6 months but it would be hard for  me every 3 months as 
my blood work here at Quest is free with Humana.   The only reason I moved to 
Florida because they made the change to once a year,  Grace and I just 
could not take the cold weather any more it was very hard on  both of us.  
 
She had a stroke in Sept. of 2015 and then when Derek passed  away June 13 
of last year within 10 min. she had a heart attack after we  found out. So I 
went to the funnel by myself. I'm still having a very hard time  dealing 
with him gone their's not a day that goes by that I think about  him.  Very 
sad. I still can't look at a picture of him without breaking  down as they say 
time heals all wounds I'll just have to wait.
 
Thanks for the info.
greenie
 
 
In a message dated 8/6/2017 9:15:20 P.M. Eastern Daylight Time,  
cmlhope@googlegroups.com writes:

Greenie, 
I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up  here in 
Indiana. But my old doc was Pinilla that Jeanie recommended. They will  
help u get your medicine. A lot less expensive to go there!!! 
Blessings, 
Susan F. Zimmerman


 
____________________________________
On Sunday, August 6, 2017  Myvety2k via CMLHope <cmlhope@googlegroups.com>  
wrote:


 
Jeanie thank you I wait and see what happens if things don't  work out for 
me I will go their.
 
greenie
 
 
In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, 
cmlhope@googlegroups.com  writes:

Hey Greenie,
I would like to suggest Moffitt cancer center  here in Tampa. They will do 
everything to help you to get your meds. It's  where I go and they have 
saved my life twice.  They accept Medicare and  medicate assignment.  If you 
need help with copayment a there is a  cancer copayment company called PSI. 
They paid my copayment for several  years. You just need to start making calls 
and get the ball rolling.  However I pray they keep sending the meds. You 
and I have been  fighting this for years. 
I go to dr Balducci head of senior oncology  center in Moffitt but the head 
of leukemia is dr Pinnalla. Check spelling.  It's great/ you go in an hour 
ahead of Drs meeting for bloodwork right at  hospital and by the time you 
meet your dr your blood work is done for him.  Every three months they do a 
PCR.  They have vallet  parking. 
Praying for you. 
Jeanie❤️❤️❤️❤️

My Motto:  
Faith and Pills
With Love
🐠18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 


On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope <cmlhope@googlegroups.com> 
 wrote:




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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-- 

 
Dr. Marinus Jonkers 
Ravenhoflaan 5 
NL- 4706 WD  Roosendaal 
Tel. +31 165 8  22128 
117 Bd de la 1ère  Armée, no. 21 
F – 83330 Le  Beausset 
Tél. +33 494 06 01  87 
email: rien16...@gmail.com 



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