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 PMTo: [email protected];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...lolAre 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 <[email protected]>
To: cmlhope <[email protected]>
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: [email protected]; 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 < [email protected]>
To: cmlhope < [email protected]>
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
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