Hi everyone.......
My dr took me off Gleevec a year ago am on Sprycel now and am doing well.I have
two bottles of Gleevec unopened...any suggestions what to do with theleftover
Gleevec???? BOOGIE WOOGIE
On Friday, February 27, 2015 2:15 AM, "cmlhope@googlegroups.com"
<cmlhope@googlegroups.com> wrote:
| cmlhope@googlegroups.com | Google Groups | |
Topic digest
View all topics
- Dr. Druker and Marty - 2 Updates
- Doctor's Visit - 5 Updates
Dr. Druker and Marty
| Susan Rosenthal <educatorsu...@aol.com>: Feb 26 10:28PM -0500
Susan:
I do not remember meeting you or Sharon. However, I was chosen by the LLS to
introduce him…I thought that was a real honor.
He is as awesome as you saw him as he is a doctor.
Every having CML does indeed have their own story to tell, that is for sure.
Hugs,
Susan
-------------------------------------------------------------------------------------------------------------------------------------
Marty:
Thinking of you…only 18's for you!!!
Hugs,
Susan
|
| Joyce Mesnarich <joy...@htc.net>: Feb 27 12:37AM -0600
I may have missed a post, but are we sure that Marty indeed got his new
kidney? I'm still praying that he did and that things are going well.
Joyce in IL
On Feb 26, 2015, at 9:28 PM, 'Susan Rosenthal' via CMLHope wrote:
|
Back to top Doctor's Visit
| Marcie Goodman <margoo...@aol.com>: Feb 26 11:19AM -0500
Hi Beth,
I think Marty had the transplant and I'm praying all is going well for him. How
are you feeling? You are such a positive, joyful person and I always look
forward to your posts.
Best wishes,
Marcie
Sent from my iPad
|
| bkbar...@aol.com: Feb 26 02:59PM -0500
HI all, I agree with Marcie, and Sherri. I think the kidney was a match or we
would have heard...so lets all keep sending up lots of prayers and light and
joy and laughter to our favorite "18"s man...he's been through a lot waiting
for this kidney and these things are not easy......but he is a trooper with a
fantastic attitude, And I we need him...
I am hanging in there, thanks for asking, struggling, but feel closer to some
answers coming my way of what is going on and how to treat it....should know
more in the next couple of weeks. Not doing BCR until March 16th, so no results
until the 26th or so...will feel much better when I have clarity that at least
that is going back in the right direction. All of you stay well. Take good care
and stay close.
18's
Love, Beth
-----Original Message-----
From: 'Marcie Goodman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, Feb 26, 2015 10:49 am
Subject: Re: [CMLHope] Doctor's Visit
Hi Beth,
I think Marty had the transplant and I'm praying all is going well for him. How
are you feeling? You are such a positive, joyful person and I always look
forward to your posts.
Best wishes,
Marcie
Sent from my iPad
On Feb 26, 2015, at 5:01 AM, sherri swanson < swanson.sherri...@gmail.com>
wrote:
Hi Beth,
I was think the same thing you were. I've been sending all the good thoughts I
could find to Marty and since we've not heard from him, it must have been a
match. Let's just keep praying that the kidney was a match and everything goes
well. He is such a wonderful person.
Have a good day.
L'chaim,
Sherri
On Wed, Feb 25, 2015 at 4:37 PM, bkbarney via CMLHope
<cmlhope@googlegroups.com> wrote:
Hi all. I think our not hearing from Marty, is a sign that the kidney was a
match. otherwise he would have posted that it did not work out and he is still
waiting? Does anybody think the same? If this is true,then he would have had
his surgery...so lets all keep sending healing energy and good thoughts, love,
his way.
I am wondering, if anyone who has been on sprycel, has developed any other
forms of cancer while on it? Thanks, Beth
-----Original Message-----
From: ICANDOALLTTC via CMLHope < cmlhope@googlegroups.com>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Wed, Feb 25, 2015 8:10 am
Subject: Re: [CMLHope] Doctor's Visit
Hi Richard and good to hear from you.
I had the worst side effects on Gleevec than any other TKI I have taken,
except for the one I am on now, Ponatinib. Boils, cramps, nausea and etc. Yes
and eye bleeds. Also and infected eye that never seemed to heal. Ponatinib is
hitting me with everything its got. I am seeing lights that aren't there and
things in my side vision that aren't there. When I close my eyes at night, the
things are still there. I was never on LSD but this feels like something like
it. Going for blood check up tomorrow; pray that it comes out ok.
Has anyone heard from Marty? Pray that he is ok.
Blessings
Jeanie<3
In a message dated 2/24/2015 1:09:55 P.M. Eastern Standard Time,
cmlhope@googlegroups.com writes:
Richard, that is great news! I pray that the Gleevec will continue to work
well and the side effects will stay away. So nice to hear good tidings! Marcie
-----Original Message-----
From: Richard H < rbhuffm...@gmail.com>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Tue, Feb 24, 2015 12:17 pm
Subject: [CMLHope] Doctor's Visit
I received my test results yesterday. It shows a major molecular reduction
down to 1.579% on the international scale. The side effects (a long list) are
minimal. The most aggravating are watery, fuzzy vision and leg, foot cramps
from twinges to a pain level 3. I started on 400mg Gleevec and in 20 days I had
gained 10 lbs. I stopped Gleevec for 7 days. I restarted 300mg Gleevec and it
has been great so far. I have changed when I take Gleevec from evening to
midday, as it was causing indigestion at bedtime. I have been able maintain my
weight and have not shown any weight increase on 300mg Gleevec.
Richard H.
Dxd 2/2003
400mg Gleevec 3/2003
Undetectable 11/03
RT-PCR negative 11/04
QT-PCR .003 11/05
RBC 8.
Gleevec Vacation 11/06-6/07
Iron infusion 11/06
Transfusions 12/06-5/07
QT-PCR .007
Gleevec 1/08 -5/08
Procrit 8/08-11/08
Gleevec Vacation 7/08-12/11/14
QT-PCR .003 4/09
QT-PCR .0015 6/09
QT-PCR .0021 9/09
QT-PCR .0028 1/10
QT-PCR .001 4/10
QT-PCR .00468 10/10
QT-PCR 1.049% 2/11
QT-PCR .0612% 8/11
QT-PCR 2.616 % 2/12
QT-PCR 2.410% 8/12
RT-PCR 9.183% 4/13
RT-PCR 4.57% 6/13
RT-PCR 10.183% 10/13
RT-PCR 10.577% 2/14
RT-PCR 16.050% 5/14
RT-PCR Approx. 20% 10/14
Restarted 400mg Gleevec 12/11/14
Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days
Started 300 mg Gleevec 1/27/14
QT-PCR 1.579% 2/15
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|
| Susan Zimmerman <rszim0...@aol.com>: Feb 26 03:12PM -0500
So happy for you, Richard!!! Fuzzy vision is weird, never had that
myself.....but those leg and foot cramps, yeah! Now with my bosulif and only on
100 mg, virtually no side effects. Your turn will come, I'm sure of it. Either
they'll find a real cure or you'll get to bosulif eventually. Even going to 200
mg of gleevec would be great!!! I wish you the best for sure!!!!
18's,
Susan Z
-----Original Message-----
From: Richard H <rbhuffm...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, Feb 24, 2015 12:17 pm
Subject: [CMLHope] Doctor's Visit
I received my test results yesterday. It shows a major molecular reduction down
to 1.579% on the international scale. The side effects (a long list) are
minimal. The most aggravating are watery, fuzzy vision and leg, foot cramps
from twinges to a pain level 3. I started on 400mg Gleevec and in 20 days I had
gained 10 lbs. I stopped Gleevec for 7 days. I restarted 300mg Gleevec and it
has been great so far. I have changed when I take Gleevec from evening to
midday, as it was causing indigestion at bedtime. I have been able maintain my
weight and have not shown any weight increase on 300mg Gleevec.
Richard H.
Dxd 2/2003
400mg Gleevec 3/2003
Undetectable 11/03
RT-PCR negative 11/04
QT-PCR .003 11/05
RBC 8.
Gleevec Vacation 11/06-6/07
Iron infusion 11/06
Transfusions 12/06-5/07
QT-PCR .007
Gleevec 1/08 -5/08
Procrit 8/08-11/08
Gleevec Vacation 7/08-12/11/14
QT-PCR .003 4/09
QT-PCR .0015 6/09
QT-PCR .0021 9/09
QT-PCR .0028 1/10
QT-PCR .001 4/10
QT-PCR .00468 10/10
QT-PCR 1.049% 2/11
QT-PCR .0612% 8/11
QT-PCR 2.616 % 2/12
QT-PCR 2.410% 8/12
RT-PCR 9.183% 4/13
RT-PCR 4.57% 6/13
RT-PCR 10.183% 10/13
RT-PCR 10.577% 2/14
RT-PCR 16.050% 5/14
RT-PCR Approx. 20% 10/14
Restarted 400mg Gleevec 12/11/14
Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days
Started 300 mg Gleevec 1/27/14
QT-PCR 1.579% 2/15
--
--
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|
| Icandoallttc <icandoall...@aol.com>: Feb 26 04:04PM -0500
Hi all
Got my blood results and check up today. Everything is good. Got some bad side
effects from ponatinib. Vision problems and headaches the worst. Rough dry skin
on thighs and some skin peeling. Just finished my 30 day supply of meds. No
joint pain or cramps. Praying for Marty--hope we hear soon.
Prayers & Blessings Jeanie 🐠🐠🐠🐠🐠🐠🐠🐠🐠🐠🐠🐠. 18,s
|
| bkbar...@aol.com: Feb 26 04:19PM -0500
Jeanie, That's great news that the blood work shows everything is good. Hard
news that your side effects are so hard. vision problems and headaches....so
sorry you are struggling, and the skin issues... still glad you are not having
any joint cramps..that's a plus...this is only the beginning...perhaps as you
adjust to the medicine, and they monitor you, over time, you can feel
better....still, I am so glad it's working for you!!! Yippee!
Thinking of Marty too...such brave warriors.....
take care,
Beth.
-----Original Message-----
From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, Feb 26, 2015 3:04 pm
Subject: Re: [CMLHope] Doctor's Visit
Hi all
Got my blood results and check up today. Everything is good. Got some bad side
effects from ponatinib. Vision problems and headaches the worst. Rough dry skin
on thighs and some skin peeling. Just finished my 30 day supply of meds. No
joint pain or cramps. Praying for Marty--hope we hear soon.
Prayers & Blessings Jeanie
\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20.
18,s
On Feb 26, 2015, at 3:12 PM, "'Susan Zimmerman' via CMLHope" <
cmlhope@googlegroups.com> wrote:
So happy for you, Richard!!! Fuzzy vision is weird, never had that
myself.....but those leg and foot cramps, yeah! Now with my bosulif and only on
100 mg, virtually no side effects. Your turn will come, I'm sure of it. Either
they'll find a real cure or you'll get to bosulif eventually. Even going to 200
mg of gleevec would be great!!! I wish you the best for sure!!!!
18's,
Susan Z
-----Original Message-----
From: Richard H < rbhuffm...@gmail.com>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Tue, Feb 24, 2015 12:17 pm
Subject: [CMLHope] Doctor's Visit
I received my test results yesterday. It shows a major molecular reduction
down to 1.579% on the international scale. The side effects (a long list) are
minimal. The most aggravating are watery, fuzzy vision and leg, foot cramps
from twinges to a pain level 3. I started on 400mg Gleevec and in 20 days I had
gained 10 lbs. I stopped Gleevec for 7 days. I restarted 300mg Gleevec and it
has been great so far. I have changed when I take Gleevec from evening to
midday, as it was causing indigestion at bedtime. I have been able maintain my
weight and have not shown any weight increase on 300mg Gleevec.
Richard H.
Dxd 2/2003
400mg Gleevec 3/2003
Undetectable 11/03
RT-PCR negative 11/04
QT-PCR .003 11/05
RBC 8.
Gleevec Vacation 11/06-6/07
Iron infusion 11/06
Transfusions 12/06-5/07
QT-PCR .007
Gleevec 1/08 -5/08
Procrit 8/08-11/08
Gleevec Vacation 7/08-12/11/14
QT-PCR .003 4/09
QT-PCR .0015 6/09
QT-PCR .0021 9/09
QT-PCR .0028 1/10
QT-PCR .001 4/10
QT-PCR .00468 10/10
QT-PCR 1.049% 2/11
QT-PCR .0612% 8/11
QT-PCR 2.616 % 2/12
QT-PCR 2.410% 8/12
RT-PCR 9.183% 4/13
RT-PCR 4.57% 6/13
RT-PCR 10.183% 10/13
RT-PCR 10.577% 2/14
RT-PCR 16.050% 5/14
RT-PCR Approx. 20% 10/14
Restarted 400mg Gleevec 12/11/14
Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days
Started 300 mg Gleevec 1/27/14
QT-PCR 1.579% 2/15
--
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