Fatigue and getting off Gleevec

[Guest guest]

Today I had an appointment with my oncologist and we discussed my ongoing

fatigue, which has not diminished during the past six months. I need 10-12

hrs sleep and a nap to feel semi-rested, which is extremely difficult to

manage being my families sole provider, plus having a 2 year old and a 5

month old. She believes that she probably won't be able to switch me off

Gleevec because I am responding to it, and is at a loss at what to do about

it. She is setting up an appointment for me with a specialist at Cedar Sinai

to see what options I may have.

Has anyone else had this problem?

[Guest guest]

Hi Neal,

There are two reasons someone would want to switch drugs. The first is due to

response and the second is due to tolerance.

Obviously if Gleevec is no longer (or never did) work, then a drug switch is

necessary. This of course is logical.

Similarly, if the patient can't tolerate the drug for whatever reason, then

switching drugs is also acceptable. Many list members have switched drugs for

the sole reason that they couldn't tolerate Gleevec.

As for the fatigue issue, I've found that when I get too much sleep (anything

more than 9 hours), I'm actually significantly MORE tired than when I get less

sleep (6 or 7 hours). I know it makes no sense at all but that's the way it is.

Tracey

>

> Today I had an appointment with my oncologist and we discussed my ongoing

> fatigue, which has not diminished during the past six months. I need 10-12

> hrs sleep and a nap to feel semi-rested, which is extremely difficult to

> manage being my families sole provider, plus having a 2 year old and a 5

> month old. She believes that she probably won't be able to switch me off

> Gleevec because I am responding to it, and is at a loss at what to do about

> it. She is setting up an appointment for me with a specialist at Cedar Sinai

> to see what options I may have.

>

>

>

> Has anyone else had this problem?

>

>

>

>

[Guest guest]

Hi Neal: Unfortunately a lot of us suffer from the fatigue. I do not know how

long you have been on Gleevec, but some have gotten better with their fatigue

after being on Gleevec for awhile.

I agree that if something is working, then why would they switch you.

I have never lost my fatigue since 2000, but I have days where I feel that I do

need the sleep. Then I have days where I realize that it was not a bad day with

regard to the fatigue.

Try not to think about being so tired, and you might feel more energetic.

A.

>

> Today I had an appointment with my oncologist and we discussed my ongoing

> fatigue, which has not diminished during the past six months. I need 10-12

> hrs sleep and a nap to feel semi-rested, which is extremely difficult to

> manage being my families sole provider, plus having a 2 year old and a 5

> month old. She believes that she probably won't be able to switch me off

> Gleevec because I am responding to it, and is at a loss at what to do about

> it. She is setting up an appointment for me with a specialist at Cedar Sinai

> to see what options I may have.

>

>

>

> Has anyone else had this problem?

>

>

>

>

[Guest guest]

Hi Neal...

I agree with Tracey in that you wouldn't want to go off Gleevec if you are

getting good results...I am on 800mg/day of Gleevec and experience little to no

side effects..however, that said, at the beginning I did find that I was very

tired...what works for me is making sure that I drink alot of water everyday -

at least 10-12 glasses per day - and I have started to include more fruits and

vegetables...not sure what your diet is like now, but I used to prefer to eat

alot of carbs - but I am finding that switching to more healthy food has given

me more energy - also I have recently started walking 35 minutes everyday on a

treadmill at a speed of 3.0/mph - this gets me working up a sweat and helps burn

off any of the side-effects - it was hard at first but after only a week I am up

to 35 minutes a day...part of the fatigue for you might also be " mental anxiety "

in the fact that you have said that you are the sole-provider for your family

and as such are feeling more stressed with your situation which may be adding to

your fatigue - I know the days that I feel the most tired are the ones where my

mind has gone to the bad places of this disease...I hope some of what I have

said is helpful to you...I'm sure others will give you some more suggestions

-I'll be thinking of you and hoping that things improve for you.

Cheryl

> >

> > Today I had an appointment with my oncologist and we discussed my ongoing

> > fatigue, which has not diminished during the past six months. I need 10-12

> > hrs sleep and a nap to feel semi-rested, which is extremely difficult to

> > manage being my families sole provider, plus having a 2 year old and a 5

> > month old. She believes that she probably won't be able to switch me off

> > Gleevec because I am responding to it, and is at a loss at what to do about

> > it. She is setting up an appointment for me with a specialist at Cedar Sinai

> > to see what options I may have.

> >

> >

> >

> > Has anyone else had this problem?

> >

> >

> >

> >

[Guest guest]

Hi Neal and Cheryl,

What Cheryl said about stress and fatigue is completely right. When I find

myself mentally exhausted it's usually because I have too much

going on at the moment. Getting out of the house for awhile helps me. We live on

a farm so I find a reason to hop in my mini van and run to town which

is 3 miles away. After some time to clear my head and think about other things

besides the overload of responsibilities I have, besides taking care of myself,

I feel better and more energized. I thought remodeling our basement was a good

idea - just adding a few walls to make some better living space - but after my

son-in-law and sons got the walls up, I have run out of energy to finish with

the priming and painting. I know it will get done, but I'm taking a break

from it for awhile.

I was on Gleevec too for almost a year but it wasn't until they added Zarnestra

that the foggy brain set in. I know you will find the energy somewhere deep

within but remember to be patient with yourself. Your body is healing and it

takes alot of energy to get it done.

Cheryl - I love your idea to increase exercise and eating healthy. It does make

a difference.

God's Blessings,

Jackie S.

________________________________

From: thornton_cheryl <thornton_cheryl@...>

Sent: Thu, February 18, 2010 11:20:54 AM

Subject: Re: [ ] Fatigue and getting off Gleevec

Hi Neal...

I agree with Tracey in that you wouldn't want to go off Gleevec if you are

getting good results...I am on 800mg/day of Gleevec and experience little to no

side effects..however, that said, at the beginning I did find that I was very

tired...what works for me is making sure that I drink alot of water everyday -

at least 10-12 glasses per day - and I have started to include more fruits and

vegetables.. .not sure what your diet is like now, but I used to prefer to eat

alot of carbs - but I am finding that switching to more healthy food has given

me more energy - also I have recently started walking 35 minutes everyday on a

treadmill at a speed of 3.0/mph - this gets me working up a sweat and helps burn

off any of the side-effects - it was hard at first but after only a week I am up

to 35 minutes a day...part of the fatigue for you might also be " mental anxiety "

in the fact that you have said that you are the sole-provider for your family

and as such are

feeling more stressed with your situation which may be adding to your fatigue -

I know the days that I feel the most tired are the ones where my mind has gone

to the bad places of this disease...I hope some of what I have said is helpful

to you...I'm sure others will give you some more suggestions -I'll be thinking

of you and hoping that things improve for you.

Cheryl

> >

> > Today I had an appointment with my oncologist and we discussed my ongoing

> > fatigue, which has not diminished during the past six months. I need 10-12

> > hrs sleep and a nap to feel semi-rested, which is extremely difficult to

> > manage being my families sole provider, plus having a 2 year old and a 5

> > month old. She believes that she probably won't be able to switch me off

> > Gleevec because I am responding to it, and is at a loss at what to do about

> > it. She is setting up an appointment for me with a specialist at Cedar Sinai

> > to see what options I may have.

> >

> >

> >

> > Has anyone else had this problem?

> >

> >

> >

> >

[Guest guest]

Thanks everyone for the suggestions.

My problem isn't with periodic fatigue, but with persisting fatigue. I am

always tired - many times to the point that I will just fall asleep on the

couch right after getting home from work. I already take walks pretty

regularly because it helps with the muscle/bone/joint pain, but it really

doesn't make a difference with the fatigue. Between working, sleeping and

trying to spend some time with the kids, I don't really have enough time to

work out more than I do.

The specialist put me on a 5 day break from Gleevec, to make sure that it is

indeed the culprit. Thursday night was the last day I took it, and Friday

morning I couldn't get up for work and used my last sick day for the year.

Saturday I woke up rested at 6:45 without an alarm clock for the first time

in a year. My " normal " weekend is catching up on sleep (12+ hours a day), a

little work around the yard and pasture, and church. This weekend I got out

to take my Border Collie to herding lessons, took my son and the dog out

into the fields to play in the rabbit holes, had friends and family over,

went to church, played fetch for a couple hours, took multiple walks, cooked

dinner for my wife, ect. It was night and day, and I was still only at about

80%.

I wish I had another weekend, because I need to trim sheep hooves and get

the garden planted.

I really hope that this doctor can figure something out to help me get my

life back.

Re: [ ] Fatigue and getting off Gleevec

Hi Neal...

I agree with Tracey in that you wouldn't want to go off Gleevec if you are

getting good results...I am on 800mg/day of Gleevec and experience little to

no side effects..however, that said, at the beginning I did find that I was

very tired...what works for me is making sure that I drink alot of water

everyday - at least 10-12 glasses per day - and I have started to include

more fruits and vegetables.. .not sure what your diet is like now, but I

used to prefer to eat alot of carbs - but I am finding that switching to

more healthy food has given me more energy - also I have recently started

walking 35 minutes everyday on a treadmill at a speed of 3.0/mph - this gets

me working up a sweat and helps burn off any of the side-effects - it was

hard at first but after only a week I am up to 35 minutes a day...part of

the fatigue for you might also be " mental anxiety " in the fact that you have

said that you are the sole-provider for your family and as such are

feeling more stressed with your situation which may be adding to your

fatigue - I know the days that I feel the most tired are the ones where my

mind has gone to the bad places of this disease...I hope some of what I have

said is helpful to you...I'm sure others will give you some more suggestions

-I'll be thinking of you and hoping that things improve for you.

Cheryl

> >

> > Today I had an appointment with my oncologist and we discussed my

ongoing

> > fatigue, which has not diminished during the past six months. I need

10-12

> > hrs sleep and a nap to feel semi-rested, which is extremely difficult to

> > manage being my families sole provider, plus having a 2 year old and a 5

> > month old. She believes that she probably won't be able to switch me off

> > Gleevec because I am responding to it, and is at a loss at what to do

about

> > it. She is setting up an appointment for me with a specialist at Cedar

Sinai

> > to see what options I may have.

> >

> >

> >

> > Has anyone else had this problem?

> >

> >

> >

> >

[Guest guest]

This is just my opinion but I think quality of life is also important..If you

are having such a difficult time with this drug(I believe you said Gleevec)

maybe they can try one of the others that are available and see if you can

maintain/improve QOL as well as PCR results..

When DX I started on Gleevec and had so many side effects that I had very little

QOL..I was bedridden at 40 years of age.I was wasting away..I was at 000.17 or

there abouts with Gleevec.I was affraid to switch and lose the pcr that I was

at.I did switch to Sprycel and it was a huge huge huge improvement..I am living

again..I am going to the gym and feeling so much better.On gleevec I felt like

death warmed over..I feel so much better now..I also am now at PCRU..I pray I

can remain on Sprycel with such good results but you never know..

Hopefully your DR will have some suggestions for you and that your QOL improves

and quickly...

SharonS

>

> Thanks everyone for the suggestions.

>

>

>

> My problem isn't with periodic fatigue, but with persisting fatigue. I am

> always tired - many times to the point that I will just fall asleep on the

> couch right after getting home from work. I already take walks pretty

> regularly because it helps with the muscle/bone/joint pain, but it really

> doesn't make a difference with the fatigue. Between working, sleeping and

> trying to spend some time with the kids, I don't really have enough time to

> work out more than I do.

>

>

>

> The specialist put me on a 5 day break from Gleevec, to make sure that it is

> indeed the culprit. Thursday night was the last day I took it, and Friday

> morning I couldn't get up for work and used my last sick day for the year.

> Saturday I woke up rested at 6:45 without an alarm clock for the first time

> in a year. My " normal " weekend is catching up on sleep (12+ hours a day), a

> little work around the yard and pasture, and church. This weekend I got out

> to take my Border Collie to herding lessons, took my son and the dog out

> into the fields to play in the rabbit holes, had friends and family over,

> went to church, played fetch for a couple hours, took multiple walks, cooked

> dinner for my wife, ect. It was night and day, and I was still only at about

> 80%.

>

>

>

> I wish I had another weekend, because I need to trim sheep hooves and get

> the garden planted.

>

>

>

> I really hope that this doctor can figure something out to help me get my

> life back.

>

[Guest guest]

Hi Neal,

I wonder if there could be something else going on. The reason I say this is

because the half life of Gleevec is 40 hours which means that it would take

about two days just to get half of the drug out of your system, then another two

days to get half of that level out and another two days for half of that to

leave etc.

At that rate, it would take a minimum of an entire week of not taking the drug

to notice any real difference yet you felt significantly better after just one

day of not taking it.

Tracey

> > >

> > > Today I had an appointment with my oncologist and we discussed my

> ongoing

> > > fatigue, which has not diminished during the past six months. I need

> 10-12

> > > hrs sleep and a nap to feel semi-rested, which is extremely difficult to

> > > manage being my families sole provider, plus having a 2 year old and a 5

> > > month old. She believes that she probably won't be able to switch me off

> > > Gleevec because I am responding to it, and is at a loss at what to do

> about

> > > it. She is setting up an appointment for me with a specialist at Cedar

> Sinai

> > > to see what options I may have.

> > >

> > >

> > >

> > > Has anyone else had this problem?

> > >

> > >

> > >

> > >

[Guest guest]

Tracey

At one point I remember going off gleevec when I was on it and I felt better

the very next day or at least 24 hours after stopping.

Sharon T

_____

From: [mailto: ] On Behalf Of

traceyincanada

Sent: Monday, February 22, 2010 6:22 PM

Subject: Re: [ ] Fatigue and getting off Gleevec

Hi Neal,

I wonder if there could be something else going on. The reason I say this is

because the half life of Gleevec is 40 hours which means that it would take

about two days just to get half of the drug out of your system, then another

two days to get half of that level out and another two days for half of that

to leave etc.

At that rate, it would take a minimum of an entire week of not taking the

drug to notice any real difference yet you felt significantly better after

just one day of not taking it.

Tracey

> > >

> > > Today I had an appointment with my oncologist and we discussed my

> ongoing

> > > fatigue, which has not diminished during the past six months. I need

> 10-12

> > > hrs sleep and a nap to feel semi-rested, which is extremely difficult

to

> > > manage being my families sole provider, plus having a 2 year old and a

5

> > > month old. She believes that she probably won't be able to switch me

off

> > > Gleevec because I am responding to it, and is at a loss at what to do

> about

> > > it. She is setting up an appointment for me with a specialist at Cedar

> Sinai

> > > to see what options I may have.

> > >

> > >

> > >

> > > Has anyone else had this problem?

> > >

> > >

> > >

> > >

[Guest guest]

I have been off Gleevec for 20 months now and was amazed that the " fog " started

lifting and the energy started to return in 24 hours. At 48 hours I began to

feel like a totally different person again. I started taking 400mg Gleevec in

Mar. 2003 maintained that dose except for the short vacations of 5 or six months

getting my Iron levels back to an acceptable level. Each time I returned to

Gleevec the " fog " and energy level would start to plummet after 24 hours and I

would bearly be able to function again using the time line you have described. I

believe that I did this about 3 or 4 times so in my case I know there was

nothing else going on.

H.

> > > >

> > > > Today I had an appointment with my oncologist and we discussed my

> > ongoing

> > > > fatigue, which has not diminished during the past six months. I need

> > 10-12

> > > > hrs sleep and a nap to feel semi-rested, which is extremely difficult

> to

> > > > manage being my families sole provider, plus having a 2 year old and a

> 5

> > > > month old. She believes that she probably won't be able to switch me

> off

> > > > Gleevec because I am responding to it, and is at a loss at what to do

> > about

> > > > it. She is setting up an appointment for me with a specialist at Cedar

> > Sinai

> > > > to see what options I may have.

> > > >

> > > >

> > > >

> > > > Has anyone else had this problem?

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I too started on Gleevec in Mar. 2003 and I've been on it since. Tired, you

bet! There are times it's hard to put one foot forward when I'm walking my

dog. But... I found two other problems which were compounding the tiredness.

First, low iron - which H. mentions - I take iron supplements and my

onc monitors my levels. Second is vitamin B-12 deficiency. somewhere along

the way I developed pernicious anemia, which makes it impossible for my body

to process the B-12 in my food. The solution, B-12 injections! Since

starting these injections I've felt well enough to start exercising again...

this helps too, strange as that sounds.

Troxel

On Mon, Feb 22, 2010 at 8:58 PM, dickie_64012 <dickie_64012@...>wrote:

>

>

> I have been off Gleevec for 20 months now and was amazed that the " fog "

> started lifting and the energy started to return in 24 hours. At 48 hours I

> began to feel like a totally different person again. I started taking 400mg

> Gleevec in Mar. 2003 maintained that dose except for the short vacations of

> 5 or six months getting my Iron levels back to an acceptable level. Each

> time I returned to Gleevec the " fog " and energy level would start to plummet

> after 24 hours and I would bearly be able to function again using the time

> line you have described. I believe that I did this about 3 or 4 times so in

> my case I know there was nothing else going on.

>

> H.

>

>

> > > > >

> > > > > Today I had an appointment with my oncologist and we discussed my

> > > ongoing

> > > > > fatigue, which has not diminished during the past six months. I

> need

> > > 10-12

> > > > > hrs sleep and a nap to feel semi-rested, which is extremely

> difficult

> > to

> > > > > manage being my families sole provider, plus having a 2 year old

> and a

> > 5

> > > > > month old. She believes that she probably won't be able to switch

> me

> > off

> > > > > Gleevec because I am responding to it, and is at a loss at what to

> do

> > > about

> > > > > it. She is setting up an appointment for me with a specialist at

> Cedar

> > > Sinai

> > > > > to see what options I may have.

> > > > >

> > > > >

> > > > >

> > > > > Has anyone else had this problem?

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

When I woke up Saturday morning, it had been almost 36 hours since taking

the drug Thursday night and I felt even better Sunday morning, so that does

make some sense.

When I started up again, I woke up the next morning with the same old

fatigue and head fog. I'm pretty sure it's the Gleevec.

Re: [ ] Fatigue and getting off Gleevec

Hi Neal,

I wonder if there could be something else going on. The reason I say this is

because the half life of Gleevec is 40 hours which means that it would take

about two days just to get half of the drug out of your system, then another

two days to get half of that level out and another two days for half of that

to leave etc.

At that rate, it would take a minimum of an entire week of not taking the

drug to notice any real difference yet you felt significantly better after

just one day of not taking it.

Tracey

> > >

> > > Today I had an appointment with my oncologist and we discussed my

> ongoing

> > > fatigue, which has not diminished during the past six months. I need

> 10-12

> > > hrs sleep and a nap to feel semi-rested, which is extremely difficult

to

> > > manage being my families sole provider, plus having a 2 year old and a

5

> > > month old. She believes that she probably won't be able to switch me

off

> > > Gleevec because I am responding to it, and is at a loss at what to do

> about

> > > it. She is setting up an appointment for me with a specialist at Cedar

> Sinai

> > > to see what options I may have.

> > >

> > >

> > >

> > > Has anyone else had this problem?

> > >

> > >

> > >

> > >