I would love to see you Susan. What is your timing? do you need a place to
stay while you are here? Let me know! I definitely want to see you. From when
to when will you be here? Thanks. Beth
-----Original Message-----
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Mon, Sep 28, 2015 3:07 pm
Subject: Re: [CMLHope] to Beth
Dear Beth again,
I looked again and we come to Northwestern on Oct. 22nd. That's a Thursday. Let
me know!
Sent from my Sprint phone
------ Original message------
From: 'Susan Zimmerman' via CMLHope
Date: Mon, Sep 28, 2015 4:01 PM
To: cmlhope@googlegroups.com;
Subject:Re: [CMLHope] New results
Dear Beth,
Sorry, I don't know what happened to September, but here i am a month later
seeing your response to my response...lol
Are you still having to wear compression bandages??? I am so sorry. We come
this Thursday to Chicago....I know you are near.
Any chance we might get together for some mutual uplift?
Blessings,
Susan F. Zimmerman
-----Original Message-----
From: bkbarney via CMLHope >
To: cmlhope >
Sent: Wed, Aug 26, 2015 8:35 pm
Subject: Re: [CMLHope] New results
Dear Marcie, and Susan,
Thanks for the kind words and prayers, much appreciated.
I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 months,
cancer walked right through it and grew. It is the only TKI that did not work
for me, all the others do but I have significant side effects..
while I am still working through the wall that I hit, I am uplifted by all the
this group. I cannot thank each one of you that responded to me, enough for
taking the time and connecting. It has been a a life line during a difficult
patch.
much love, Beth
-----Original Message-----
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Mon, Aug 24, 2015 11:37 pm
Subject: Re: [CMLHope] New results
Dear Beth, I feel terrible about your lymphedema and certainly understand the
misery when people stare and are rude. Please remember you are so beautiful
inside and out and we are all pulling for you. You have been a MAJOR
inspiration to me and so many others on here. Always a kind word to everyone. I
am hoping you might have your doc think about bosulif for you. Everyone is
different but sprycel seems to have more side effects than the others. We are
all wishing for a complete turnaround for you!!! Keep your thoughts on things
above and He will be there for you, too! Much love and prayers, Susan Z. P.s.
This is my dog Paris wishing you the best!
Sent from my Sprint phone
------ Original message------
From: margood18 via CMLHope
Date: Mon, Aug 24, 2015 2:15 PM
To: cmlhope@googlegroups.com;
Subject:Re: [CMLHope] New results
Beth,
I'm so sorry you are having such a difficult time. I knew that things were not
easy for you but I did not realize just how tough. I pray, too, that new drugs
will come on the market to alleviate the terrible side effects so many
experience. I'm keeping you in my thoughts and prayers.
Marcie
-----Original Message-----
From: bkbarney via CMLHope >
To: cmlhope >
Sent: Mon, Aug 24, 2015 12:23 pm
Subject: Re: [CMLHope] New results
Dear Joyce,
Thanks so much for your reply. I apologize for not responding sooner. I have
not been feeling great. I go up and down, undetectable and showing but with
very low numbers....what is considered a major molecular remission...with CML
testing positive. My struggles have always been the side effects and y body's
capacity to tolerate the drugs. They do work for me which is great! this past
year, post a botched lower back surgery and the subsequent second surgery to
correct the fist one..seemed to erupt something in me and I am struggling with
significant lymphedema/lipoedema. So, I am wearing compression garments, on
legs, arms and torso except when I sleep.it's been debilitating in terms of
movement..There is also no cure, like CL, just management...I don't know how
this happened but it's here and I have to learn to live with it and manage
it.while so many others have it so much worse, I try to stay positive, and be
forward looking, with gratitude for what I do have, but this is taking a toll
on my spirit. It feels lonely and isolating. People stare at you. it can be a
cruel world. All I want is to feel well and strong in my body...I am doing
everything I know to do..
If anyone here has had this type of reaction from taking a TKI, specifically
sprycel..please let me know. It is clear, from my constantly elevated CPK which
is rising, and the lack of healthy collagen and muscle building capacity in my
body that sprycel is inhibiting more than the protein that causes CML. I am
hopeful for new drugs that will be developed in the future that might work
better for me. I miss everyone and send love and 18's to all of you..big group
hug!!!
Beth
-----Original Message-----
From: Joyce Mesnarich < joy...@htc.net>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Sat, Jul 25, 2015 12:35 pm
Subject: Re: [CMLHope] New results
Thanks Beth,
I think these TKIs are so new that they do not fully know all the side
effects, and especially not the long term ones. We are confident in his doctor
and he is watching it closely. Have you reached "undetectable" on your low
dose of tasigna?
Thanks for your good thoughts.
Joyce in IL
On Jul 24, 2015, at 10:36 PM, bkbarney via CMLHope wrote:
Hi Joyce, I am so glad that your husband's CML numbers are going
in the right direction. The cml journey is often a balancing act, between the
right dosage and side effects...Maybe your husband could be on 150 of busutinif
with time??? It seems that 200 put him close to remission. I had to go off
tasigna because of elevated liver enzymes, 10 X normal. Going off the med for a
short time to give the liver a rest, and then using the lowest possible
successful dosage...seems to work for some people. I hope your husband's liver
calms down. I will keep my fingers crossed. 18's Beth
-----Original Message-----
From: Joyce Mesn
--
--
[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.
