Thanks JeanieMarty..please respond so we know what is going on. we are
thinking of you!!!
Hope all is well with everyone...still dragging with this ongoing virus..am
going to restart sprycel cell very soon...will keep everyone updated..love,
Beth
-Original Message-
From: 'Jeanie' via CMLHope
To: cmlhope
Sent: Fri, Jul 15, 2016 11:30 am
Subject: Re: [CMLHope] Fatigue side effect testing nilotinib
Hi Beth and so sorry you have been so ill. I too had an awful virus that
started with a sore throat. I had to take round of antibiotics but was so full
of mucus and sick for weeks. Maybe it's a new type of virus because I had all
my flu shots.
I still have this awful side pain so another rounds of scans soon. They show
nothing so far.
I'm in MMR but still have some detectable cells. Fight in sweet warrior. We
are worried about Marty. Marty are you there???
My Motto:
Faith and Pills
With Love
🐠18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center
On Jul 13, 2016, at 1:36 PM, bkbarney via CMLHope
wrote:
Dear Jeanie,
Hope you are feeling better...and staying positive! Sorry it took so long for
me to write back to you and everyone. I got really sickvirus that morphed
into a bacterial infection...it was scary...103 fever for close to a week. I am
at week five, and finally feel about 80 percent better. My BCR Abl results came
back not showing on June 6th and on June 8th I got sick..so I went off sprycel
for a drug holiday during this illnessnow preparing to re-uptake meds this
weekend. I did another BCR-ABl one month later..last week..still waiting to see
the results of that one..wondering if this illness could have any effect on
cancer. We will find out...
Otherwise, status quo, very high CPK, exhausted all the time from it...but
choosing not to go on high dose steroids or immune suppressing drugs at this
time...so, while I may change my mind in the future, for now...I remain
positive and trying to fight the good fight. If CPK goes over 1000 then it
starts kidney damage and thus, I will have no choice but to do one of the above
interventions.
that's my story, trying to stay cool, and feel better from this virus and get
back to work. I have 6000 emails waiting...unbelievable...I lost 6 weeks in a
blink!
Hope life has calmed down for those struggling this summer and that we all can
find some joy in the weeks to come! I hear there are some sweet movies out
guaranteed to make you smile...so I am going to look into this...:)
Warmest regards and 18'as Beth.
-Original Message-
From: 'Jeanie' via CMLHope
To: cmlhope
Sent: Tue, Jul 12, 2016 11:04 am
Subject: Re: [CMLHope] Fatigue side effect testing nilotinib
Anyone there. Testing
My Motto:
Faith and Pills
With Love
🐠18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center
On Jul 6, 2016, at 7:12 PM, Ricardo Gadelha wrote:
Thank you all for the feedback. I am trying acupunture and guaraná.
Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope"
escreveu:
When I was first in Gleevec I wanted to go visit my daughter. She called and I
told her I was too tired to pack. She said don't pack get some rest. So my
advise to you is don't do anything you don't have to do. Rest as much as you
can. Your body is fighting a horrible disease and its tired. Listen to your
body. Try to exercise some it don't over due. Good luck.
My Motto:
Faith and Pills
With Love
🐠18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center
On Jun 27, 2016, at 8:39 PM, kathy walls wrote:
I hear you!!! I had the fatigue the whole time I was on the drug. When I
changed drugs because of the multitude of side effects I had the fatigue
lessened dramatically. I'm on gleevec 200mg daily and while I'm not considered
in remission I feel s much better I'll take the #'s I got and run
Sent from my iPhone
On Jun 27, 2016, at 7:54 PM, Ricardo Gadelha wrote:
Hi folks,
Does anyone know how to deal with fatigue that comes with nilotinib 400 mg bid?
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