I was on Gleevec for about 6 years and then it stopped working. They moved
me to Sprycel and many of the side affects, just as you mentioned, of
Gleevec went AWAY. It was a wonderful change. Now after 8 years on
Sprycel, they are moving me to Bosulif due to water around my heart and
lungs. I en
On Saturday, August 5, 2017, Vivi wrote:
> 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
Hi all
Went to Moffitt today and blood is good. Dr recommending going off meds but
I've always gone out of remission without my pills. I have decided to cut back
a few days at the time. My playlets were borderline low.
I tried to see dr pinila but the appointments got mixed up and my other o
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
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
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 o
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
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
I mean Medicare assignment.
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 6, 2017, at 5:56 PM, Jeanie wrote:
>
> Hey Greenie,
> I wo
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
Rien, I forget to mention that I get my blood here in Florida every 3
months and everything looks good. I have got to Chicago only the first week
in
June each year..
Thanks,
greenie
In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time,
rien16...@gmail.com writes:
Hello!
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 D
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 st
Hi all. This is Jeanie. I have lost remission
4 times and really sick most of the times. I am on my 4 the and probably las
tki , Ponatinib. I get mutants. So far not on Ponatinib. Ive been taking
Ponatinib for over 2 years. So far so good but worry every time I get blood
work. My doctor sa
Hi
After 14 years on Glivec and being in deep remision 5MR i stopped treatment
more than 3 years ago. Did monthly PCR for 1 year and now every 2-3 month.
Feeling great. No zombi eyes, less cramps and living normal life.
Best
Giora
נשלח מה-iPhone שלי
ב-5 באוג׳ 2017, בשעה 20:59, 'Holly' via CM
After 12 years on Gleevec(I was in the first trials at Siteman cancer center) I
switched to Tasigna and all of those symptoms you described went away and I'm
still molecularly cancer free. Maybe you should talk to your doctor about
switching meds. Made a world of difference for me.
Diagnosed: 3
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
ok me
> 90 minutes to de-stress and had to drive myself home because he had not
> warned me that he intended to do this and to bring a driver along. There's
> one doctor who will NOT be doing another BMB on me!! I think he needs a few
> more lessons in how to do it.
>
> Anyway,
OUR tries to get a viable sample.
>>>> Never had this happen before. Four crunching entries.
>>>> Sort of like having four BMB's at the same time. Afterwards I was almost
>>>> in a state of shock and could not stand, nauseous, very stressed. (In
>>&g
he same time. Afterwards I was almost in
>>> a state of shock and could not stand, nauseous, very stressed. (In Canada
>>> we do not get sedation or morphine for this procedure.) It took me 90
>>> minutes to de-stress and had to drive myself home because he had not
Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) >
To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)
Sent: Wednesday, June 17, 2015 7:29 AM
Subject: Re: [CMLHope] Stopping Gleevec
Hi Angie,
You are not thee only one that has stopped your TKI and felt that way.
someti
NOT be doing another BMB on me!! I think he needs a few more lessons in
>> how to do it.
>>
>> Anyway, I am finestill low platelets. Life goes on.
>> Angie
>>
>>
>> From: Marty Gartenberg
>> To: cmlhope@googlegroups.com
>> Sent: Wednes
BMB on me!! I think he needs a few
> more lessons in how to do it.
>
> Anyway, I am finestill low platelets. Life goes on.
> Angie
>
>
> --
> *From:* Marty Gartenberg
> *To:* cmlhope@googlegroups.com
> *Sent:* Wednesday, June 17, 201
>>> minutes to de-stress and had to drive myself home because he had not warned
>>> me that he intended to do this and to bring a driver along. There's one
>>> doctor who will NOT be doing another BMB on me!! I think he needs a few
>>> more lessons in how to do
ome because he had not
> warned me that he intended to do this and to bring a driver along. There's
> one doctor who will NOT be doing another BMB on me!! I think he needs a few
> more lessons in how to do it.
>
> Anyway, I am finestill low platelets. Life goes on.
&g
h any fear. No fear, Angie, no fear!
18's,
Susan F. Zimmerman
-Original Message-
From: Giora Sharf
To: cmlhope
Sent: Wed, Jun 17, 2015 2:35 am
Subject: RE: [CMLHope] Stopping Gleevec
Hi Angie
We have similar story. I started Glivec on 14.2.2001 and was on 400 mg ti
er along. There's one doctor who will
> NOT be doing another BMB on me!! I think he needs a few more lessons in how
> to do it.
>
> Anyway, I am finestill low platelets. Life goes on.
> Angie
>
>
> From: Marty Gartenberg
> To: cmlhope@googlegroups.com
>
platelets. Life goes on.Angie
From: Marty Gartenberg
To: cmlhope@googlegroups.com
Sent: Wednesday, June 17, 2015 7:29 AM
Subject: Re: [CMLHope] Stopping Gleevec
Hi Angie,
You are not thee only one that has stopped your TKI and felt that way.
sometimes something that we take as f
Hi Angie,
You are not thee only one that has stopped your TKI and felt that way.
sometimes something that we take as far as any TKI's ends up being a crutch
for us and we always seem to worry if this or that will come back to haunt
us. It is a normal human response and we worry about it.
Angie, s
is to health and life
Giora
From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of
ANGELYN ESDERS
Sent: Wednesday, June 17, 2015 1:12 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Stopping Gleevec
Thank you for your kind letter, Giora. I remember you from
nthly PCR on international scale.
(IS)Good luck whatever you decideGiora
From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of
ANGELYN ESDERS
Sent: Wednesday, June 17, 2015 4:03 AM
To: cmlhope@googlegroups.com
Subject: [CMLHope] Stopping Gleevec I just received an email fr
esday, June 17, 2015 4:03 AM
To: cmlhope@googlegroups.com
Subject: [CMLHope] Stopping Gleevec
I just received an email from my oncologist telling me that it is safe for me
to stop Gleevec for 3 months.
I started Gleevec in January 2001, and reached cytogenic remission in July
2001.
I've
I just received an email from my oncologist telling me that it is safe for me
to stop Gleevec for 3 months.I started Gleevec in January 2001, and reached
cytogenic remission in July 2001. I've continued on 300mg per day.I was in the
study for 12 years.I feel like it is my safety net between wel
What happens when someone has successfully been on Gleevec for 7+ years, and
then goes off of it? The doctor is suggesting this, saying he might be
cured.
Debby
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