Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-18 Thread 'Jeanie' via CMLHope 
Hi Beth
My flu drug on too. Do you have a lot of mucus?  I was in bed for a month it 
seemed.  Get better.  Drink lots of water.  

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 17, 2016, at 11:37 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
> wrote:
> 
> 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 <cmlhope@googlegroups.com>
> To: cmlhope <cmlhope@googlegroups.com>
> 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 <cmlhope@googlegroups.com> 
> 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 <cmlhope@googlegroups.com>
> To: cmlhope <cmlhope@googlegroups.com>
> 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 <ricardodgade...@gmail.com> wrote:
> 
> Thank you all for the feedback. I am trying acupunture and guaraná.
> Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" <cmlhope@googlegroups.com> 
> 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 1

Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-17 Thread bkbarney via CMLHope 
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 <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
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 <cmlhope@googlegroups.com> 
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 <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
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 <ricardodgade...@gmail.com> wrote:



Thank you all for the feedback. I am trying acupunture and guaraná.
Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" <cmlhope@googlegroups.com> 
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 <cand...@originalsbykate.com> 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 <ricardodgade...@gmail.com> wrote:



Hi folks,
Does anyone know how to deal with fatigue that comes with  nilotinib 400 mg bid?

-- 
-- 
[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 
cmlho

Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-15 Thread 'Jeanie' via CMLHope 
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 <cmlhope@googlegroups.com> 
> 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 <cmlhope@googlegroups.com>
> To: cmlhope <cmlhope@googlegroups.com>
> 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 <ricardodgade...@gmail.com> wrote:
> 
> Thank you all for the feedback. I am trying acupunture and guaraná.
> Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" <cmlhope@googlegroups.com> 
> 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 <cand...@originalsbykate.com> 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 <ricardodgade...@gmail.com> 
>> wrote:
>> 
>> Hi folks,
>> Does anyone know how to deal with fatigue that comes with  nilotinib 400 mg 
>> bid?
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>>

Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-13 Thread Myvety2k via CMLHope 
Hang in their Beth.
 
greenie
 
 
In a message dated 7/13/2016 1:36:11 P.M. Eastern Daylight Time,  
cmlhope@googlegroups.com writes:

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  <cmlhope@googlegroups.com>
To: cmlhope  <cmlhope@googlegroups.com>
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 <_ricardodgadelha@gmail.com_ 
(mailto:ricardodgade...@gmail.com) > wrote:




Thank you all for the feedback. I am trying acupunture and  guaraná.
Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope"  
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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 <_candles@originalsbykate.com_ 
(mailto:cand...@originalsbykate.com) > 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 <_ricardodgadelha@gmail.com_ 
(mailto:ricardodgade...@gmail.com) > wrote:




Hi folks,
Does anyone know how to deal with fatigue  that comes with  nilotinib 400 
mg bid?

-- 
-- 
[CMLHope]
A support group of _http://cmlhope.com_ (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_ 
(mailto:CMLHope@googlegroups.com) 
To unsubscribe from this  group, send email to 
_CMLHope-unsubscribe@googlegroups.com_ 
(mailto: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+unsubscribe@googlegroups.com_ 
(mailto:cmlhope+unsubscr...@googlegroups.com) .
For more  options, visit https://groups.google.com/d/optout.



-- 
-- 
[CMLHope]
A support group of _http://cmlhope.com_ (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_ 
(mailto:CMLHope@googlegroups.com) 
To unsubsc

Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-13 Thread bkbarney via CMLHope 
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 <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
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 <ricardodgade...@gmail.com> wrote:



Thank you all for the feedback. I am trying acupunture and guaraná.
Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" <cmlhope@googlegroups.com> 
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 <cand...@originalsbykate.com> 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 <ricardodgade...@gmail.com> wrote:



Hi folks,
Does anyone know how to deal with fatigue that comes with  nilotinib 400 mg bid?

-- 
-- 
[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

Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-13 Thread 'Jeanie' via CMLHope 
Thanks Joyce
I have been worried too. It's not like him to not answer.  Also do you remember 
John.  He was on Ponatinib like me.  He hasn't been on for a while.  I know 
summer is slow. 
I am good except for side pain.  They are still trying to find out why. 
Sorry about the corn but it will be gone soon.  Maybe they will let you pick 
some.  My dad used to grate it and my mother would fry it.  Yum
Let us know how the visit goes.  

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 12, 2016, at 2:08 PM, Joyce Mesnarich  wrote:
> 
> Hi Jeanie,
> You are still connected.  LOL  Things have been rather quiet lately in the 
> group.  Maybe we are all too busy trying to keep cool.  I guess the biggest 
> bug-a-boo in my life right now is the tall corn growing in the field in front 
> of my house (not our crop) and sealing us of from the rest of the world.  We 
> cannot see anything.  Feel all alone in the world.  So I guess you could say 
> that things are going pretty well if that is my biggest problem.
> My husband will go to see Dr Talpaz next month.  Hoping for a good report.
> Hope you are feeling better.  Ever get a dx for that pain in your side?
> I am concerned about Marty.  Have not seen anything from him for awhile.  
> Prayers for you, Marty.  Let us know how you are.
> 
> God bless and keep you.
>  Joyce in IL
>> On Jul 12, 2016, at 11:04 AM, 'Jeanie' via CMLHope 
>>  wrote:
>> 
>> 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?
>> 
>> 
>> -- 
>> -- 
>> [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

Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-12 Thread Joyce Mesnarich 
Hi Jeanie,
You are still connected.  LOL  Things have been rather quiet lately in the 
group.  Maybe we are all too busy trying to keep cool.  I guess the biggest 
bug-a-boo in my life right now is the tall corn growing in the field in front 
of my house (not our crop) and sealing us of from the rest of the world.  We 
cannot see anything.  Feel all alone in the world.  So I guess you could say 
that things are going pretty well if that is my biggest problem.
My husband will go to see Dr Talpaz next month.  Hoping for a good report.
Hope you are feeling better.  Ever get a dx for that pain in your side?
I am concerned about Marty.  Have not seen anything from him for awhile.  
Prayers for you, Marty.  Let us know how you are.

God bless and keep you.
 Joyce in IL
> On Jul 12, 2016, at 11:04 AM, 'Jeanie' via CMLHope  
> wrote:
> 
> 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?
 
 
 -- 
 -- 
 [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 
>>

Re: [CMLHope] Fatigue side effect testing nilotinib

2016-07-12 Thread 'Jeanie' via CMLHope 
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?
 
 -- 
 -- 
 [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