Your Motto is a good one for you Jeanie, Faith and meds as needed...you really
are blessed with such a large and amazing family!!! When is your
birthday???Happy almost 80!!
Love and 18's Beth
-----Original Message-----
From: 'Jeanie' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, Apr 5, 2018 6:48 am
Subject: Re: [CMLHope] Beth muscle issues
Thank you so much and sorry for waiting so long to answer.
As you know I have been suffering with pain under my right rib for years now.
In 2009 I was switched from gleevec to tasing a. The pain under my rib
increased and my onc At that time gave me tramadol. It seemed to help for a
while. The. I went out of remission and had to be hospitalized while they
cleansed my blood. I kept asking my onc to put me on spyrcel but he wasnβt
familiar with the drug and kept refusing. A nurse that had worked at Moffitt
finally convinced him to do so. About this time I decided I needed to go to
Moffitt.
So after getting my sprycel I got an appointment with Dr Balducci at Moffitt.
Sprycel put me in remission for 4 years and then developed a mutant. The newest
thing out was Ponatinib and he put me in that. It put me back in remission in 3
Months. But on this drug my right side pain became unbearable and my onc put me
on oxycodone. I had every test available if they ant find cause of the pain so
my only choice is to treat the pain.
Then the pain in my right pinky started and went to my elbow waking me up at
night in terrible pain. Sometimes burning in my feet and pain also.
Dr Balducci has retired and I now have his colleague Dr Martine Extermann but
only met with her once.
I am just trying to work through this pain and keep active when I can.
Faith and pills is my motto. I will be 80 soon. My daughter is giving me a pool
party with all family. 5 children 14 grandchildren and 15 great grandchildren.
I am so blessed.
I lost my hubby of 42 years in 1998 from diabetes and heart problems.
Thanks for uplifting me and keep up the good work. I pray for your body to
heal.
Blessing
My Motto:
Faith and Pills
With Love
π 18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extramine
0 CBL. ABL
On Mar 23, 2018, at 12:45 AM, bkbarney via CMLHope <cmlhope@googlegroups.com>
wrote:
Dear Jeanie,
So good to hear from you. I know you struggle with lots of different
things...and yet carry on...and stay strong with your faith and friends
etc...80 years young....sounds good to me.. I am in my mid fifties so need to
work, so praying I will be able to do so for a long time to come. My answer to
your question is a bit complicated. Spraining your ankle, that REALLY can
hurt... That type of pain my docs would recommend arnica spray or/ and some
advil or similar anti inflammatory..your bones and muscles are two different
things..so if both are waking you up at night...I would ask the doc about
that..does massage help??? is it like a cramp or a deep ache? Ponatinib is
known for some specific side effects...but it could be arthritis
etc....remember to stay really hydrated as that can cause real muscle cramping
at night...
My situation is that the TKI's created a pretty immediate elevation in my CPK
levels..a test that measures muscle breakdown...so the sprycel does a great job
for me but also inhibits other processes in my particular case, ( as we are all
different and the drugs seem to affect us all quite differently) so my muscles
have a ahrd time repairing and when I am active for a period of time, my body
starts to hurt all over..muscularly, I can start to feel weakened and in a lot
of pain. Good rest, some aspirin or upon rarer occasion, tramadol seems to
help, so does therapeutic massage when I can afford it as well as being in the
warm water pool...very soothing and relaxing to the muscles....hate the
chlorine, but love the feeling!!
My love and 18's to all.....spring is here,, the weather just needs to wake up
to that fact!
Write soon,
Beth
-----Original Message-----
From: 'Jeanie' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sun, Mar 11, 2018 5:52 am
Subject: [CMLHope] Beth muscle issues
Hi sweet Beth
So glad to hear from you and get our uplifts we so badly need.
I sprained my muscle in the top part of my right leg and it really hurt. Then
my bones a muscles started to wake me up at night. I get up and massage them. I
was wondering if you are under a doctors care for the muscles and what they
told you to do for pain and all.
I take Ponatinib and have for 3 years this Jan.
I limped for about a week but it's gradually getting better I don't think I
could work but I am 80 years young in May.
Looking forward to your advice.
I still walk and do some house work and gardening.
Love you so very much.
Jeanie
My Motto:
Faith and Pills
With Love
π 18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extramine
0 CBL. ABL
On Mar 10, 2018, at 8:41 PM, bkbarney via CMLHope <cmlhope@googlegroups.com>
wrote:
Dear Marty, Jeanie, Greenie, Susan, SuzieQ, Richard, Kristen and everyone else
who am forgetting because of my chemo brain. I am here, think about everyone
often...had a bad flu season...really starting to feel better only now....Wow17
years for both Kristen and Jeanie!! Congrats...I just hit 8 years on February
12th....Time marches on..so glad to be here with all of you...
My latest blood work came back undetectable...so I was very happy to see
that....still navigating the severe muscle fatigue, deterioration issues, and
some heart sprycel related stuff..but I am truly blessed to be here...and to
still be able to work....
love to all of you out there.....the glass is half full in Chicago!
18's
Beth
-----Original Message-----
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: wa2yyx <wa2...@gmail.com>; cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Mar 10, 2018 4:18 pm
Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic
For me it's been 13 years.....
18's,
Susan F. Zimmerman
On Saturday, March 10, 2018 Marty Gartenberg <wa2...@gmail.com> wrote:
Hi Jeanie,
Wow 17 years! Good for you as well. My congratulates to you. Hey are you
catching up with me? 30 years for me.
Time fly's by when your riding on the Marquis Express. Okay now lets all sing
along all of you people out there...`πππππππΆπππ«π¬ππππͺ
18's,
Marty
On Sat, Mar 10, 2018 at 5:00 PM, 'Jeanie' via CMLHope
<cmlhope@googlegroups.com> wrote:
I am celebrating 17 years also. I'm on my 4 tki: Ponatinib. Been a rough ride.
How bout you!
My Motto:
Faith and Pills
With Love
π 18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extramine
0 CBL. ABL
On Mar 10, 2018, at 2:10 PM, Kristin Lieberman <kristinlieber...@gmail.com>
wrote:
Iβm here. Celebrating my 17th year as a CML survivor!
Kristin
Sent from my iPhone
On Mar 10, 2018, at 2:11 AM, cmlhope@googlegroups.com wrote:
cmlhope@googlegroups.com
Google Groups
Topic digest
View all topics
Hello - 1 Update
Hello
Marty Gartenberg <wa2...@gmail.com>: Mar 09 04:12PM -0500
Hello, hello... Is anyone out there?
18's,
Marty
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