Re: [CMLHope] Fatigue side effect testing nilotinib

['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  
> 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 
> 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:

Re: [CMLHope] Fatigue side effect testing nilotinib

[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 
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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A support group of http://cmlhope.com
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Re: [CMLHope] Fatigue side effect testing nilotinib

['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  
> 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?
>> -- 
>> -- 
>> [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

Re: [CMLHope] Fatigue side effect testing nilotinib

[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  
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 <_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/) 
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Re: [CMLHope] Fatigue side effect testing nilotinib

[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 
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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A support group of http://cmlhope.com
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Re: [CMLHope] Fatigue side effect testing nilotinib

['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 
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> 
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Re: [CMLHope] Fatigue side effect testing nilotinib

[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?
 
 
 -- 
 -- 
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 .
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 .
>>> 
>>> -- 
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Re: [CMLHope] Fatigue side effect testing nilotinib

['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?
 
 -- 
 -- 
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 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.
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>> 
>> -- 
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>>  
>> You received this message because you are subscribed to the Google Groups 
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> 
> -- 
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Re: [CMLHope] Fatigue side effect nilotinib

['Jeanie' via CMLHope]

Where are you John

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 7, 2016, at 9:10 AM, Jeanie  wrote:
> 
> Try walking some.  It helps me but just don't get tired or hot.  
> 
> 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
> --- 
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> For more options, visit https://groups.google.com/d/optout.
 -- 
 -- 
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 For more options, visit https://groups.google.com/d/optout.
>>> 
>>> -- 
>>> -- 
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>>> A support group of http://cmlhope.com
>>> -
>>>  
>>> You received this message because you are subscribed to the Google Groups 
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>> 
>> -- 
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Re: [CMLHope] Fatigue side effect nilotinib

['Jeanie' via CMLHope]

Are you ok Marty!!!

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 7, 2016, at 9:10 AM, Jeanie  wrote:
> 
> Try walking some.  It helps me but just don't get tired or hot.  
> 
> 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 
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> For more options, visit https://groups.google.com/d/optout.
 -- 
 -- 
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 A support group of http://cmlhope.com
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 To post to this group, send email to CMLHope@googlegroups.com
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 For more options, visit https://groups.google.com/d/optout.
>>> 
>>> -- 
>>> -- 
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>>> A support group of http://cmlhope.com
>>> -
>>>  
>>> You received this message because you are subscribed to the Google Groups 
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>> 
>> -- 
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Re: [CMLHope] Fatigue side effect nilotinib

['Jeanie' via CMLHope]

Try walking some.  It helps me but just don't get tired or hot.  

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 
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 For more options, visit this group at 
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 --- 
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 To unsubscribe from this group and stop receiving emails from it, send an 
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 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 
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>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
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Re: [CMLHope] Fatigue side effect nilotinib

[Ricardo Gadelha]

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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Re: [CMLHope] Fatigue side effect nilotinib

['Jeanie' via CMLHope]

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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Re: [CMLHope] Fatigue side effect nilotinib

[kathy walls]

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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[CMLHope] Fatigue side effect nilotinib

[Ricardo Gadelha]

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

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Re: [CMLHope] Fatigue and eating right

[ICANDOALLTTC]

While I was on Tasigna I had to have two transfusions;  My onc at that  
time used anything under 8 as the sign for a transfusion.  I am on Sprycel  now 
and have worked on my hemg and it is now 13.4 which is a magic number for  
me.
Eating right and fueling your body often with good foods is a must.
Good luck,
Jeanie<3
 
 
In a message dated 6/27/2013 11:48:54 A.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

 
Hi Marcie,
 
Since I am on dialysis I get Epogen at almost every treatment. Even  though 
it is a low dose my doctor wants to give me at least twice the amount  but 
Medicare will not allow it. This also seems to be the case with you as  
well. I don't know what insurance you have but it all filters down to money  
and 
our "wonderful" health care system. 
 
You may also want to ask if you could receive Iron injections. It is much  
less in cost to Procrit and Epogen and it may help your system. 
 
Also if your not diabetic instead of drinking eight glasses of water  
throughout the day why not drink four glasses of cranberry juice (great for  
the 
kidneys) and four glasses of water?
 
You may want to stay away from a lot of caffeine and try to get along  with 
a bit less of it in your diet. I know you mentioned that you eat a  healthy 
diet but does include things that are high in iron? Dark green leafy  
vegatables like kayle and spinich. Red meat and anything with high amounts of  
iron.
 
I wish you well.
 
We have just about setteled in here so it is the rest of the summer to  try 
and enjoy.
 
18's,
 
Marty
 
Even with an 11 HGB I still feel lousy. Once I get up to 12 (rarely) then  
I begin to feel better.



On Wed, Jun 26, 2013 at 8:55 PM, Marcie Goodman <_margood18@aol.com_ 
(mailto:margoo...@aol.com) > wrote:


Hi Marty,


I don't know if any if our fellow warriors have experienced this but  about 
a year ago, maybe longer, my onc told me that protocols had changed  and I 
could no longer receive Procrit or other red cell injection as an out  
patient. It can only be given if you are admitted to the hospital. Perhaps  
this 
is just in Maryland or just at the cancer center where he  practices. 


I have always been told that my magic number was 11. If under that, I  used 
to get Procrit injections. And I was still tired. Now, it has been a  long 
time without and my red cells usually hover around the 10 to 10 point  
something mark. Fatigue is part of my life but I'm used to operating on a  
caffeine fueled morning and after that 8 glasses of water throughout the day  
and 
night and a healthy diet. Obviously, this is not a one size fits all  
answer. 


Hope you are doing well. How are things going now that you are at your  
summer home?


18s, my friend. 
 


Marcie

Sent from my iPad

 
 

On Jun 26, 2013, at 8:24 PM, Marty Gartenberg <_wa2yyx@gmail.com_ 
(mailto:wa2...@gmail.com) > wrote:




 
Hi Wesley,
 
First, I have never been on any of the TKI's but had a bone marrow  
transplant more then 23 years ago. So that you understand more about  fatigue, 
it 
could be caused by a lot of things but in your case I would  suspect that the 
Gleevec may be playing havoc with your red blood cells as  well as your 
hemoglobin. 
 
A simple CBC could be a very effective tool to determine if you are  
anemic. If so then I would urge you to speak to your doctor and ask if he  or 
she 
may want to put you on either Epogen or Procrit. If your hemoglobin  is at 
or below 10 then I think that may be of help to you. That is if  either of 
those will not effect the Gleevec.
 
18's
Marty



On Wed, Jun 26, 2013 at 12:53 PM, Wesley Simon  <_gm.wesley@gmail.com_ 
(mailto:gm.wes...@gmail.com) > wrote:


Morning everyone,


I have been silently  following this email list for a while.  I work in the 
computer  industry and am well aware that anything we write on here will be 
 searchable and viewable by the entire world, so I have been hesitant to  
write.

My question is about fatigue.  Does anyone take  anything to combat the 
fatigue caused by gleevec?  I read about  research somewhere in Texas where 
they're trying a narcolepsy drug  called Nuvigil to combat fatigue in patients 
taking gleevec.  The  research is ongoing and closed to new patients.  I 
called my  doctor's nurse and asked about something to fight this fatigue and 
the  doctor told the nurse to tell me there is nothing that can be done about 
 it.  I don't believe this.  In fact, the research I mention  above 
contradicts my doctor's view.

My next appointment is in  August, I'd like to have some information to 
take with me so that I can  have a potential solution in hand when I see the 
doctor.  I don't  have much faith in my doctor.  I do believe he understands 
what he  is supposed to prescribe and what the numbers mean, but I don't 
think he  has any experience in treating side-effects.

After two years on  gleevec, my number is 0.03% and slowly decreasing.  
Unlike  many of you, I have no desire to take a drug vacation.  My  
s

Re: [CMLHope] Fatigue

[ICANDOALLTTC]

Hi Wes and glad to hear from you.  Yes we are all fighting  fatigue.  
Sometimes I just feel like lying on the couch but I won't let  myself.  I walk 
daily, even if I don't feel like it; exercise daily, just  light exercise, eat 
yogurt daily, eat foods high in iron and etc.  You  might try some B12 as 
this is an energy vit.  Get some sun daily if  possible not too much.  10-15 
minutes in the high sun rays will do  it.  Buy the subliminal b12 tablets 
and let them dissolve under you  tongue.  Stay away from artificial sweeteners 
and lower you sugar  intake.  Try to eat all natural foods, organic if 
possible and especially  the dark green and dark orange.  Our liver is having 
to 
deal with these  drugs and needs help all the time with good nutritious 
foods.  Eat a large  meal when you take your Gleevec.
 
So happy you are in remission.  I finally made it on Sprycel.
Good luck
Jeanie<3
 
 
In a message dated 6/26/2013 5:53:42 P.M. Eastern Daylight Time,  
margoo...@aol.com writes:

Hi  Wes:

Welcome to our group. This is an incredible gathering of loving,  
supportive and knowledgeable people. 

I've been on Gleevec since March  2009, started at 400 mg, bumped up in 
April 2010 to 600 mg, where I remain. If  my next BCR-ABL and FISH, which are 
being done on Friday, come back with good  response, my onc is willing to try 
me back at 400 mg. I am in complete  hematologic and cytogenetic remissions 
but still detectable on the molecular  side, although my last number was 
the same as yours. 

Fatigue is an  ongoing issue and I recently changed some things in my diet 
which have been  helpful. I'm eating almonds and cherries regularly, 
drinking eight 8 oz  glasses of water daily and red meat once, maybe twice a 
week. 
There is iron in  there which boosts my red cells which in turn boost my 
energy. 

I'm  sure many others will respond with worthwhile suggestions. Best of 
luck to you  and we are here whenever you need us. 

Marcie

Sent from my  iPad

On Jun 26, 2013, at 12:53 PM, Wesley Simon   wrote:

> 
> Morning  everyone,
> 
> 
> I have been silently following this email  list for a while.  I work in 
the computer industry and am well aware that  anything we write on here will 
be searchable and viewable by the entire world,  so I have been hesitant to 
write.
> 
> My question is about  fatigue.  Does anyone take anything to combat the 
fatigue caused by  gleevec?  I read about research somewhere in Texas where 
they're trying a  narcolepsy drug called Nuvigil to combat fatigue in 
patients taking  gleevec.  The research is ongoing and closed to new patients.  
I  
called my doctor's nurse and asked about something to fight this fatigue and 
 the doctor told the nurse to tell me there is nothing that can be done 
about  it.  I don't believe this.  In fact, the research I mention above  
contradicts my doctor's view.  
> 
> My next appointment is  in August, I'd like to have some information to 
take with me so that I can  have a potential solution in hand when I see the 
doctor.  I don't have  much faith in my doctor.  I do believe he understands 
what he is supposed  to prescribe and what the numbers mean, but I don't 
think he has any  experience in treating side-effects.
> 
> After two years on   gleevec, my number is 0.03% and slowly decreasing.  
Unlike many of you, I  have no desire to take a drug vacation.  My 
side-effects, other than  fatigue, have been minimal.  I'd rather treat the 
side-effect than change  my dose or change the medication.  
> 
> I look forward to  your input.
> 
> Have a great day!
> 
> \Wes
>  
> -- 
> -- 
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>  -
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Re: [CMLHope] Fatigue

[Marty Gartenberg]

Hi Marcie,

Since I am on dialysis I get Epogen at almost every treatment. Even though
it is a low dose my doctor wants to give me at least twice the amount but
Medicare will not allow it. This also seems to be the case with you as
well. I don't know what insurance you have but it all filters down to money
and our "wonderful" health care system.

You may also want to ask if you could receive Iron injections. It is much
less in cost to Procrit and Epogen and it may help your system.

Also if your not diabetic instead of drinking eight glasses of water
throughout the day why not drink four glasses of cranberry juice (great for
the kidneys) and four glasses of water?

You may want to stay away from a lot of caffeine and try to get along with
a bit less of it in your diet. I know you mentioned that you eat a healthy
diet but does include things that are high in iron? Dark green leafy
vegatables like kayle and spinich. Red meat and anything with high amounts
of iron.

I wish you well.

We have just about setteled in here so it is the rest of the summer to try
and enjoy.

18's,

Marty

Even with an 11 HGB I still feel lousy. Once I get up to 12 (rarely) then I
begin to feel better.


On Wed, Jun 26, 2013 at 8:55 PM, Marcie Goodman  wrote:

> Hi Marty,
>
> I don't know if any if our fellow warriors have experienced this but about
> a year ago, maybe longer, my onc told me that protocols had changed and I
> could no longer receive Procrit or other red cell injection as an out
> patient. It can only be given if you are admitted to the hospital. Perhaps
> this is just in Maryland or just at the cancer center where he practices.
>
> I have always been told that my magic number was 11. If under that, I used
> to get Procrit injections. And I was still tired. Now, it has been a long
> time without and my red cells usually hover around the 10 to 10 point
> something mark. Fatigue is part of my life but I'm used to operating on a
> caffeine fueled morning and after that 8 glasses of water throughout the
> day and night and a healthy diet. Obviously, this is not a one size fits
> all answer.
>
> Hope you are doing well. How are things going now that you are at your
> summer home?
>
> 18s, my friend.
>
> Marcie
>
> Sent from my iPad
>
> On Jun 26, 2013, at 8:24 PM, Marty Gartenberg  wrote:
>
> Hi Wesley,
>
> First, I have never been on any of the TKI's but had a bone marrow
> transplant more then 23 years ago. So that you understand more about
> fatigue, it could be caused by a lot of things but in your case I would
> suspect that the Gleevec may be playing havoc with your red blood cells as
> well as your hemoglobin.
>
> A simple CBC could be a very effective tool to determine if you are
> anemic. If so then I would urge you to speak to your doctor and ask if he
> or she may want to put you on either Epogen or Procrit. If your hemoglobin
> is at or below 10 then I think that may be of help to you. That is if
> either of those will not effect the Gleevec.
>
> 18's
> Marty
>
>
> On Wed, Jun 26, 2013 at 12:53 PM, Wesley Simon wrote:
>
>>
>> Morning everyone,
>>
>>
>> I have been silently following this email list for a while.  I work in
>> the computer industry and am well aware that anything we write on here will
>> be searchable and viewable by the entire world, so I have been hesitant to
>> write.
>>
>> My question is about fatigue.  Does anyone take anything to combat the
>> fatigue caused by gleevec?  I read about research somewhere in Texas where
>> they're trying a narcolepsy drug called Nuvigil to combat fatigue in
>> patients taking gleevec.  The research is ongoing and closed to new
>> patients.  I called my doctor's nurse and asked about something to fight
>> this fatigue and the doctor told the nurse to tell me there is nothing that
>> can be done about it.  I don't believe this.  In fact, the research I
>> mention above contradicts my doctor's view.
>>
>> My next appointment is in August, I'd like to have some information to
>> take with me so that I can have a potential solution in hand when I see the
>> doctor.  I don't have much faith in my doctor.  I do believe he understands
>> what he is supposed to prescribe and what the numbers mean, but I don't
>> think he has any experience in treating side-effects.
>>
>> After two years on  gleevec, my number is 0.03% and slowly decreasing.
>>  Unlike many of you, I have no desire to take a drug vacation.  My
>> side-effects, other than fatigue, have been minimal.  I'd rather treat the
>> side-effect than change my dose or change the medication.
>>
>> I look forward to your input.
>>
>> Have a great day!
>>
>> \Wes
>>
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>
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Re: [CMLHope] Fatigue

[Marcie Goodman]

Hi Marty,

I don't know if any if our fellow warriors have experienced this but about a 
year ago, maybe longer, my onc told me that protocols had changed and I could 
no longer receive Procrit or other red cell injection as an out patient. It can 
only be given if you are admitted to the hospital. Perhaps this is just in 
Maryland or just at the cancer center where he practices. 

I have always been told that my magic number was 11. If under that, I used to 
get Procrit injections. And I was still tired. Now, it has been a long time 
without and my red cells usually hover around the 10 to 10 point something 
mark. Fatigue is part of my life but I'm used to operating on a caffeine fueled 
morning and after that 8 glasses of water throughout the day and night and a 
healthy diet. Obviously, this is not a one size fits all answer. 

Hope you are doing well. How are things going now that you are at your summer 
home?

18s, my friend. 

Marcie

Sent from my iPad

On Jun 26, 2013, at 8:24 PM, Marty Gartenberg  wrote:

> Hi Wesley,
>  
> First, I have never been on any of the TKI's but had a bone marrow transplant 
> more then 23 years ago. So that you understand more about fatigue, it could 
> be caused by a lot of things but in your case I would suspect that the 
> Gleevec may be playing havoc with your red blood cells as well as your 
> hemoglobin.
>  
> A simple CBC could be a very effective tool to determine if you are anemic. 
> If so then I would urge you to speak to your doctor and ask if he or she may 
> want to put you on either Epogen or Procrit. If your hemoglobin is at or 
> below 10 then I think that may be of help to you. That is if either of those 
> will not effect the Gleevec.
>  
> 18's
> Marty
> 
> 
> On Wed, Jun 26, 2013 at 12:53 PM, Wesley Simon  wrote:
>> 
>> Morning everyone,
>> 
>> 
>> I have been silently following this email list for a while.  I work in the 
>> computer industry and am well aware that anything we write on here will be 
>> searchable and viewable by the entire world, so I have been hesitant to 
>> write.
>> 
>> My question is about fatigue.  Does anyone take anything to combat the 
>> fatigue caused by gleevec?  I read about research somewhere in Texas where 
>> they're trying a narcolepsy drug called Nuvigil to combat fatigue in 
>> patients taking gleevec.  The research is ongoing and closed to new 
>> patients.  I called my doctor's nurse and asked about something to fight 
>> this fatigue and the doctor told the nurse to tell me there is nothing that 
>> can be done about it.  I don't believe this.  In fact, the research I 
>> mention above contradicts my doctor's view.
>> 
>> My next appointment is in August, I'd like to have some information to take 
>> with me so that I can have a potential solution in hand when I see the 
>> doctor.  I don't have much faith in my doctor.  I do believe he understands 
>> what he is supposed to prescribe and what the numbers mean, but I don't 
>> think he has any experience in treating side-effects.
>> 
>> After two years on  gleevec, my number is 0.03% and slowly decreasing.  
>> Unlike many of you, I have no desire to take a drug vacation.  My 
>> side-effects, other than fatigue, have been minimal.  I'd rather treat the 
>> side-effect than change my dose or change the medication.
>> 
>> I look forward to your input.
>> 
>> Have a great day!
>> 
>> \Wes
>> 
>> --
>> --
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>> A support group of http://cmlhope.com
>> -
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> 
> -- 
> -- 
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> -
>  
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Re: [CMLHope] Fatigue

[Marty Gartenberg]

Hi Wesley,

First, I have never been on any of the TKI's but had a bone marrow
transplant more then 23 years ago. So that you understand more about
fatigue, it could be caused by a lot of things but in your case I would
suspect that the Gleevec may be playing havoc with your red blood cells as
well as your hemoglobin.

A simple CBC could be a very effective tool to determine if you are anemic.
If so then I would urge you to speak to your doctor and ask if he or she
may want to put you on either Epogen or Procrit. If your hemoglobin is at
or below 10 then I think that may be of help to you. That is if either of
those will not effect the Gleevec.

18's
Marty


On Wed, Jun 26, 2013 at 12:53 PM, Wesley Simon  wrote:

>
> Morning everyone,
>
>
> I have been silently following this email list for a while.  I work in the
> computer industry and am well aware that anything we write on here will be
> searchable and viewable by the entire world, so I have been hesitant to
> write.
>
> My question is about fatigue.  Does anyone take anything to combat the
> fatigue caused by gleevec?  I read about research somewhere in Texas where
> they're trying a narcolepsy drug called Nuvigil to combat fatigue in
> patients taking gleevec.  The research is ongoing and closed to new
> patients.  I called my doctor's nurse and asked about something to fight
> this fatigue and the doctor told the nurse to tell me there is nothing that
> can be done about it.  I don't believe this.  In fact, the research I
> mention above contradicts my doctor's view.
>
> My next appointment is in August, I'd like to have some information to
> take with me so that I can have a potential solution in hand when I see the
> doctor.  I don't have much faith in my doctor.  I do believe he understands
> what he is supposed to prescribe and what the numbers mean, but I don't
> think he has any experience in treating side-effects.
>
> After two years on  gleevec, my number is 0.03% and slowly decreasing.
>  Unlike many of you, I have no desire to take a drug vacation.  My
> side-effects, other than fatigue, have been minimal.  I'd rather treat the
> side-effect than change my dose or change the medication.
>
> I look forward to your input.
>
> Have a great day!
>
> \Wes
>
> --
> --
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>
>

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Re: [CMLHope] Fatigue

[Marcie Goodman]

Hi Wes:

Welcome to our group. This is an incredible gathering of loving, supportive and 
knowledgeable people. 

I've been on Gleevec since March 2009, started at 400 mg, bumped up in April 
2010 to 600 mg, where I remain. If my next BCR-ABL and FISH, which are being 
done on Friday, come back with good response, my onc is willing to try me back 
at 400 mg. I am in complete hematologic and cytogenetic remissions but still 
detectable on the molecular side, although my last number was the same as 
yours. 

Fatigue is an ongoing issue and I recently changed some things in my diet which 
have been helpful. I'm eating almonds and cherries regularly, drinking eight 8 
oz glasses of water daily and red meat once, maybe twice a week. There is iron 
in there which boosts my red cells which in turn boost my energy. 

I'm sure many others will respond with worthwhile suggestions. Best of luck to 
you and we are here whenever you need us. 

Marcie

Sent from my iPad

On Jun 26, 2013, at 12:53 PM, Wesley Simon  wrote:

> 
> Morning everyone,
> 
> 
> I have been silently following this email list for a while.  I work in the 
> computer industry and am well aware that anything we write on here will be 
> searchable and viewable by the entire world, so I have been hesitant to write.
> 
> My question is about fatigue.  Does anyone take anything to combat the 
> fatigue caused by gleevec?  I read about research somewhere in Texas where 
> they're trying a narcolepsy drug called Nuvigil to combat fatigue in patients 
> taking gleevec.  The research is ongoing and closed to new patients.  I 
> called my doctor's nurse and asked about something to fight this fatigue and 
> the doctor told the nurse to tell me there is nothing that can be done about 
> it.  I don't believe this.  In fact, the research I mention above contradicts 
> my doctor's view.  
> 
> My next appointment is in August, I'd like to have some information to take 
> with me so that I can have a potential solution in hand when I see the 
> doctor.  I don't have much faith in my doctor.  I do believe he understands 
> what he is supposed to prescribe and what the numbers mean, but I don't think 
> he has any experience in treating side-effects.
> 
> After two years on  gleevec, my number is 0.03% and slowly decreasing.  
> Unlike many of you, I have no desire to take a drug vacation.  My 
> side-effects, other than fatigue, have been minimal.  I'd rather treat the 
> side-effect than change my dose or change the medication.  
> 
> I look forward to your input.
> 
> Have a great day!
> 
> \Wes
> 
> -- 
> -- 
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> -
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> 

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[CMLHope] Fatigue

[Wesley Simon]

Morning everyone,


I have been silently following this email list for a while.  I work in the 
computer industry and am well aware that anything we write on here will be 
searchable and viewable by the entire world, so I have been hesitant to write.

My question is about fatigue.  Does anyone take anything to combat the fatigue 
caused by gleevec?  I read about research somewhere in Texas where they're 
trying a narcolepsy drug called Nuvigil to combat fatigue in patients taking 
gleevec.  The research is ongoing and closed to new patients.  I called my 
doctor's nurse and asked about something to fight this fatigue and the doctor 
told the nurse to tell me there is nothing that can be done about it.  I don't 
believe this.  In fact, the research I mention above contradicts my doctor's 
view.  

My next appointment is in August, I'd like to have some information to take 
with me so that I can have a potential solution in hand when I see the doctor.  
I don't have much faith in my doctor.  I do believe he understands what he is 
supposed to prescribe and what the numbers mean, but I don't think he has any 
experience in treating side-effects.

After two years on  gleevec, my number is 0.03% and slowly decreasing.  Unlike 
many of you, I have no desire to take a drug vacation.  My side-effects, other 
than fatigue, have been minimal.  I'd rather treat the side-effect than change 
my dose or change the medication.  

I look forward to your input.

Have a great day!

\Wes

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[CMLHope] Fatigue

[JudyPrusky, Calgary]

Ok, I'd like to join the Fatigue Group too.  My onc.
says that the fatigue is part of Gleevec.  Some days
I'm really good and have lots of energy and then the
next day I'm almost a zombie.  I am lucky as I am
retired and can "put my feet up" during the day - my
husband encourages me to do this, and I really try. 
But, on good days I don't want to waste that precious
time.

I do find that by riding my recumbant bike daily my
energy is a bit better but it's getting on the bike
and finding the energy to really pedal and raise a
sweat that is hard.  Whew, just thinking about it
right now makes my muscles tired!

No matter how you cut it, Gleevec is a strong chemical
going into our bodies and our systems are doing a lot
of work with that drug.  That's my story and I'm
stickin' to it.

Hugs to all, Judy

Hugs,
Judy P. in Calgary


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[CMLHope] fatigue

[larry]

morning fellow CML warriors  . simple question i hope  . been on gleevec
for 4.5 years pcr negative and doing just fine  .  only real side affect
i seem to have is being tired a lot .  41 yr old male work 40-45 hrs a
week do all the normal stuff  . i have heard that the gleevec is hard on
the body and it seems that many of us experience fatigue on a regular
bases  . my wife ( been married 2 months ) :)  says that i seem to be
tired a lot and wondered what if any the gleevec plays a part in that
fatigue  . didn't have the answer so i thought i would ask the group .
is there something in the gleevec itself or just a result of it doing
its job to combat the cml  . blessings to all the group , battle on
warriors  and God bless you all  . 
 
thanks Larry  
Lexington  , ky  .

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