Susan, your a sweetheart.
greenie
In a message dated 8/7/2017 10:48:32 A.M. Eastern Daylight Time,
cmlhope@googlegroups.com writes:
Dear Greenie,
I do sympathize with you so much about losing your son. I remember when
you had to go to the funeral without your lovely wife. It must have been very
hard on her, too. They say grief has no definite time frame. Praying for
you.
So glad we were able to meet in New Carlisle that time. You helped Roy and
I with the shortcut through chicago.
Love ya more later
Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing,
and shall have wonderful peace." Ps.37:11
____________________________________
On Monday, August 7, 2017 Myvety2k via CMLHope <cmlhope@googlegroups.com>
wrote:
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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