Dear Kathy,
I just wanted to say hello and let you know that many of us are out here,
following your posts and are cheering for you...The beginning years are often
the hardest for many with CML as finding the right TKI for you at just the
right dose which helps to keep the cancer under control..( chronic) while at
the same time enabling you to have a quality of life----that's not always easy
at first..but it does get better usually with time and patience......It sounds
like Tasigna worked well for the cancer, but your dosage was too high for your
system to handle. Since Tasigna is many many times more powerful than
Gleevec...it makes sense that you may have to take more Gleevec to maintain a
stable range for your BCR-ABL. There seem to always be trade offs....in any
case, try to keep your chin up...and stay close here so you don't feel alone...
thinking of you,,
18's Beth
-----Original Message-----
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, May 31, 2016 12:15 pm
Subject: Re: [CMLHope] Pictures
Hi Kathy,
Well that is the story, living rather then existing, and we all have that in
common, although sometimes we feel that we are existing, but that is another
story that most of us have been through myself included...
Anyway, since your counts are slowly rising and you seem to be tolerating the
200 mg of Gleevec except for your counts going up then your doctor may
subscribe a higher dose probably 400mg which is the usual dose when your
dealing with Gleevec first starting out but not necessary because we are all
different. It just has to find the "happy range" to try and keep on the right
track, or maybe he will do some changes with your TKI's? I remember asking you
if your oncologist specializes in CML?
You remember something... Yes it is those two numbers..
18's,
Marty
Yes Marty, I was on tasigna from 1/15 to 12/15. Skin issues is putting it
mild!! Horrible rash and cysts. I then started 300mg daily of gleevec(tasigna
was 490mg) all my numbers looked great 3 mo out with the gleevec but still had
some skin issues so he reduced the dose to 200 my daily and that has made a big
improvement for my skin and of course self esteem. But the down side I guess is
that all magical cancer cells per billion is creeping up. So far he's not
worried but he said we will have talk about increasing or changing meds. But
for now I'm living not just exsiting!!!
On Tue, May 31, 2016 at 11:35 AM, kathy walls <cand...@originalsbykate.com>
wrote:
Yes Marty, I was on tasigna from 1/15 to 12/15. Skin issues is putting it
mild!! Horrible rash and cysts. I then started 300mg daily of gleevec(tasigna
was 490mg) all my numbers looked great 3 mo out with the gleevec but still had
some skin issues so he reduced the dose to 200 my daily and that has made a big
improvement for my skin and of course self esteem. But the down side I guess is
that all magical cancer cells per billion is creeping up. So far he's not
worried but he said we will have talk about increasing or changing meds. But
for now I'm living not just exsiting!!!
18's
Kate
Sent from my iPhone
On May 31, 2016, at 9:41 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
Hi Cathy,
Please refresh my mind... Why did you have to stop Tasigna in the first place.
If my memory serves me correctly was it because of some skin problems?
Which ever way it is has your doctor suggested that you should try another TKI?
and how long are you using Tasigna?
18's,
Marty
On Tue, May 31, 2016 at 8:41 AM, kathy walls <cand...@originalsbykate.com>
wrote:
On the tasigna my molecular level was
0.04. Since I changed to gleevec that level has risen to 3.98. So that's where
I'm at
Sent from my iPhone
On May 30, 2016, at 10:18 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
Hi Kate,
First of all if you have CML then you have the Philadelphia Chromosome. What
bothers me is if the oncologist told you about you never reaching remission,
then what level was he talking about? Have you taken any PCR tests yet? And if
you did then what were the results? But since you are a " newbie" you may have
not taken any, and also is your doctor a CML specialist?
There is a lot to think about, trust me you will learn to ask questions.
Remember the more ask the more that you will learn.
Glad to see that your sporting the 18's
18's to you as well.
Marty
On Mon, May 30, 2016 at 9:27 PM, kathy walls <cand...@originalsbykate.com>
wrote:
I'm still a newbie was diagnosed 1/9 and started tasigna on the 23rd, oh yeah
I'm lucky enough to have the ph chromosome to boot. I stopped tasigna in
December because of horrible side effects, I got an awful rash and cysts.
Switched to Gleevev and I feel much better, but did dr said at this level i
will never see remission. I'm ok with that. Quality of like is much important
to me than quantity. I'm 56 I have a 4 yr old grandson and 3 month old
grandson. I'd much rather a little pep in my step than being in remission but
to sick to anything! Just my thoughts. We all are fighting the same fight each
in our way
BEST TO ALL. -18's
Kate
Sent from my iPhone
On May 30, 2016, at 8:55 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
Yes Jeanie,
we are still all kicking! Jeanie what happened in the past according to your
oncologist about you being to old should remain in the past and I will tell you
why. I also want you to think about something called BASHERT, which I have
already mentioned many times. It's meaning is it was meant to be. Sound
familiar? I believe that things that are meant to be are predestined.
For instance this site, and everyone that reads it or posts on it are meant to
be because all of us are still kicking (as you said) and we all share this
disease called CML and let's not forget that.
There are so many stories that surrounds us and every one of them are meant to
be. We all stand here and try help each other. Why? it's because it is meant to
be. We give of each other, and also to each other, and you know what I am
talking about. It is all about trying to live our lives the best way that we
can.
Also, all of these new TKI's weren't they all predestined or if you like, meant
to be? That is how I look at things, how about you? And how about everyone
else here?
Why do you think I always end any of my posts with those two numbers? 18's,
because it stands for life, and isn't that we have now.
18's,
Marty
On Mon, May 30, 2016 at 5:41 PM, 'Jeanie' via CMLHope
<cmlhope@googlegroups.com> wrote:
Thank you so very much Marty.
If I knew then what I knew today I think I would have
Had the transplant. My onc at that time thought I
Was too old. However I'm still alive and kicking
After 4 tkis. I am sick; I can't seem to kick this flu.
Just resting after my vacation.
I sure had a good time with family.
Thanks for all as usual.
Sent from my iPhone
On May 30, 2016, at 4:57 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
Hi again Jeanie,
I just spoke with my good friend Gloria today and I asked her if she wouldn't
mind for me to send you and the rest of the group three of her pictures. One
before her BMT, one during her BMT and one about one year after her BMT. She
thought it was a very good idea. She also mentioned that she would like to try
getting onto this CML site and introduce herself so please be on the lookout
for her.
The main thing here is those pictures which proves that there is life after a
bone marrow transplant. Think about something else... What about those 1,286
people, including myself which now makes it 1,287.
18's,
Marty
Scroll down please...
GLORIA
Forward
Edit subject
Pop out reply
To
cmlhope@googlegroups.com
CcBcc
Cc
Bcc
Replies will be sent from wa2...@gmail.com
Loading...
<image.png>
Image:
Small|Best fit|Original size|Remove
Sans Serif
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
--
--
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at http://groups.google.com/group/CMLHope
---
You received this message because you are subscribed to the Google Groups
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
