Re: Side effects questions - Gleevec

[Guest guest]

Hi Tammy,

I had exactly the same side effects when I started gleevec (I am 40, dx in

2005, 400mg/day), bad hip pain, shoulder pain, some stomach pain, etc. The

worst of it lasted only a few days. I did take some pain meds (with my dr

advise). After a couple of weeks all the pain was gone, just feeling a bit

tired for about a month. Drinking a lot of water and walking (at first a

little) helped with the hips/shoulders pain. A couple of months after dx I

had resumed a pretty normal life and all the sports I used to practice

(scuba, climbing, hiking). Take the pills with a real meal to avoid stomach

pain. Hang on, it will get better.

Marcos.

On 10/8/07, Tammy Ferns <tammy@...> wrote:

>

> I know I need to ask my doctor, and I will, but that isn't until the

> 16th.

> I'm on day 12 with the medication.

>

> My hips hurt. My shoulders, my knees and elbows. Like I walked in a

> marathon

> or something. Is this the bone pain? I don't know, I don't think I'm being

> whiney, but everything just hurts - a little. Just enough to make me

> irritable with my children. They don't want that - and neither do I. I did

> call the nurse... no answer yet.

>

> I'm not eating very well either. Nothing sounds good. I mean, I do eat

> something around meal times. But not like I used to. Now I eat about 1/2

> what I ate before I started the meds. Is that normal? Should I ask about

> taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

>

> Is it normal to feel like I am falling apart from the inside out? I don't

> WANT to be on pain pills. They give me a headache and make me feel

> hung-over.

>

> Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

> someday, I can be one with more answers... for now... ugh!

>

> Tammy

>

>

[Guest guest]

Hi Tammy. What is happening to you is typical what happenend to all of us when

we start our treatment. Hung in there it will get better by time. You have

joined a very good support group.

T

dxd 1/03

PCRU 1/07

-------------- Original message --------------

From: " Tammy Ferns " <tammy@...>

I know I need to ask my doctor, and I will, but that isn't until the 16th.

I'm on day 12 with the medication.

My hips hurt. My shoulders, my knees and elbows. Like I walked in a marathon

or something. Is this the bone pain? I don't know, I don't think I'm being

whiney, but everything just hurts - a little. Just enough to make me

irritable with my children. They don't want that - and neither do I. I did

call the nurse... no answer yet.

I'm not eating very well either. Nothing sounds good. I mean, I do eat

something around meal times. But not like I used to. Now I eat about 1/2

what I ate before I started the meds. Is that normal? Should I ask about

taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

Is it normal to feel like I am falling apart from the inside out? I don't

WANT to be on pain pills. They give me a headache and make me feel

hung-over.

Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

someday, I can be one with more answers... for now... ugh!

Tammy

[Guest guest]

Tammy, Don't give up!

Many of the side effects will lessen when your body adjusts to the medication.

It can really be tough the first few months, believe me I know. I can't count

the number of times I was ready to give up. But think of it this way, the side

effects are telling you that Gleevec is working to combat the CML...and that it

won't be long before you'll be feeling better, your WBC will go down, then maybe

the Doc wil be able to reduce the dosage.

We know how frustrating it can be, hang on, it'll get easier.

Margaret Raymod

mtadros9@... wrote:

Hi Tammy. What is happening to you is typical what happenend to all of

us when we start our treatment. Hung in there it will get better by time. You

have joined a very good support group.

T

dxd 1/03

PCRU 1/07

-------------- Original message --------------

From: " Tammy Ferns " <tammy@...>

I know I need to ask my doctor, and I will, but that isn't until the 16th.

I'm on day 12 with the medication.

My hips hurt. My shoulders, my knees and elbows. Like I walked in a marathon

or something. Is this the bone pain? I don't know, I don't think I'm being

whiney, but everything just hurts - a little. Just enough to make me

irritable with my children. They don't want that - and neither do I. I did

call the nurse... no answer yet.

I'm not eating very well either. Nothing sounds good. I mean, I do eat

something around meal times. But not like I used to. Now I eat about 1/2

what I ate before I started the meds. Is that normal? Should I ask about

taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

Is it normal to feel like I am falling apart from the inside out? I don't

WANT to be on pain pills. They give me a headache and make me feel

hung-over.

Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

someday, I can be one with more answers... for now... ugh!

Tammy

[Guest guest]

Hi Tammy,

Well I have been on Gleevac since early 2003 and I must say I have found the

side effects very minimal. I had the puffy eyes for awhile, and sometimes if I

take it with a very light snack I feel a bit nauseous for awhile. Lately I've

been suffering with cramp like pain in my leg at night which is pretty horrible

but on the whole I'm sure you will find once your body adjusts the side effects

will decrease a lot.

I must admit because I spent my first year of treatment on Interferon, which I

found the side effects to be many and horrible, I have found Gleevac to be

pretty " side effect free " .

I wish you luck and hope you can find a way to get through these initial stages

cos it really will get better.

Take care

Liddy

[ ] Side effects questions - Gleevec

I know I need to ask my doctor, and I will, but that isn't until the 16th.

I'm on day 12 with the medication.

My hips hurt. My shoulders, my knees and elbows. Like I walked in a marathon

or something. Is this the bone pain? I don't know, I don't think I'm being

whiney, but everything just hurts - a little. Just enough to make me

irritable with my children. They don't want that - and neither do I. I did

call the nurse... no answer yet.

I'm not eating very well either. Nothing sounds good. I mean, I do eat

something around meal times. But not like I used to. Now I eat about 1/2

what I ate before I started the meds. Is that normal? Should I ask about

taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

Is it normal to feel like I am falling apart from the inside out? I don't

WANT to be on pain pills. They give me a headache and make me feel

hung-over.

Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

someday, I can be one with more answers... for now... ugh!

Tammy

[Guest guest]

>Regarding leg cramps....try drinking at least a glass of tonic water a

day....helped with

my leg cramps and also cramping in my fingers.

> Hi Tammy,

> Well I have been on Gleevac since early 2003 and I must say I have found the

side effects

very minimal. I had the puffy eyes for awhile, and sometimes if I take it with a

very light

snack I feel a bit nauseous for awhile. Lately I've been suffering with cramp

like pain in my

leg at night which is pretty horrible but on the whole I'm sure you will find

once your body

adjusts the side effects will decrease a lot.

> I must admit because I spent my first year of treatment on Interferon, which I

found the

side effects to be many and horrible, I have found Gleevac to be pretty " side

effect free " .

> I wish you luck and hope you can find a way to get through these initial

stages cos it

really will get better.

> Take care

> Liddy

> [ ] Side effects questions - Gleevec

>

>

> I know I need to ask my doctor, and I will, but that isn't until the 16th.

> I'm on day 12 with the medication.

>

> My hips hurt. My shoulders, my knees and elbows. Like I walked in a marathon

> or something. Is this the bone pain? I don't know, I don't think I'm being

> whiney, but everything just hurts - a little. Just enough to make me

> irritable with my children. They don't want that - and neither do I. I did

> call the nurse... no answer yet.

>

> I'm not eating very well either. Nothing sounds good. I mean, I do eat

> something around meal times. But not like I used to. Now I eat about 1/2

> what I ate before I started the meds. Is that normal? Should I ask about

> taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

>

> Is it normal to feel like I am falling apart from the inside out? I don't

> WANT to be on pain pills. They give me a headache and make me feel

> hung-over.

>

> Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

> someday, I can be one with more answers... for now... ugh!

>

> Tammy

>

>

[Guest guest]

Wow, thankyou so much for that tip. I will definitely try it. Thanks so much.

Liddy

[ ] Side effects questions - Gleevec

>

>

> I know I need to ask my doctor, and I will, but that isn't until the 16th.

> I'm on day 12 with the medication.

>

> My hips hurt. My shoulders, my knees and elbows. Like I walked in a marathon

> or something. Is this the bone pain? I don't know, I don't think I'm being

> whiney, but everything just hurts - a little. Just enough to make me

> irritable with my children. They don't want that - and neither do I. I did

> call the nurse... no answer yet.

>

> I'm not eating very well either. Nothing sounds good. I mean, I do eat

> something around meal times. But not like I used to. Now I eat about 1/2

> what I ate before I started the meds. Is that normal? Should I ask about

> taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

>

> Is it normal to feel like I am falling apart from the inside out? I don't

> WANT to be on pain pills. They give me a headache and make me feel

> hung-over.

>

> Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

> someday, I can be one with more answers... for now... ugh!

>

> Tammy

>

>

[Guest guest]

Thank you for all the encouraging words. I need them. I think, besides the

physical pain, my own personal emotional pain (roller coaster) isn't helping

with my whole overall person.

I never thought about it as - the side effects let me know it is working.

That helps. Another 'part' of the problem is, I wasn't really sick BEFORE

this diagnosis! The meds are actually making me feel worse than I felt

before. Though I KNOW the inside of my body wouldn't agree.

Thanks again,

Tammy

_____

From: [mailto: ] On Behalf Of Liddy

Sent: Monday, October 08, 2007 10:56 PM

Subject: Re: [ ] Side effects questions - Gleevec

Hi Tammy,

Well I have been on Gleevac since early 2003 and I must say I have found the

side effects very minimal. I had the puffy eyes for awhile, and sometimes if

I take it with a very light snack I feel a bit nauseous for awhile. Lately

I've been suffering with cramp like pain in my leg at night which is pretty

horrible but on the whole I'm sure you will find once your body adjusts the

side effects will decrease a lot.

I must admit because I spent my first year of treatment on Interferon, which

I found the side effects to be many and horrible, I have found Gleevac to be

pretty " side effect free " .

I wish you luck and hope you can find a way to get through these initial

stages cos it really will get better.

Take care

Liddy

[ ] Side effects questions - Gleevec

I know I need to ask my doctor, and I will, but that isn't until the 16th.

I'm on day 12 with the medication.

My hips hurt. My shoulders, my knees and elbows. Like I walked in a marathon

or something. Is this the bone pain? I don't know, I don't think I'm being

whiney, but everything just hurts - a little. Just enough to make me

irritable with my children. They don't want that - and neither do I. I did

call the nurse... no answer yet.

I'm not eating very well either. Nothing sounds good. I mean, I do eat

something around meal times. But not like I used to. Now I eat about 1/2

what I ate before I started the meds. Is that normal? Should I ask about

taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

Is it normal to feel like I am falling apart from the inside out? I don't

WANT to be on pain pills. They give me a headache and make me feel

hung-over.

Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

someday, I can be one with more answers... for now... ugh!

Tammy

[Guest guest]

Hi Tammy – I know exactly what you mean! I find of an evening, when I come

inside after feeding my dogs, I am so tired that I have to lie down and

don’t want to eat and don’t feel hungry (which is the complete anathema for

me!) I also get the cold shivers and even though rugged up, feel like I

can’t get warm for ages.

I’ve also found that if I don’t eat a decent bowl of cereal first in the

morning then take the Glivec that I get a splitting headache and feel

dreadful. I also have to be careful with acidic food – so oranges and

mandarins, fruit juice are out and my beloved vegemite.

I also find how I feel each day is dependant on the quality of sleep I have

the night before. Little sleep – splitting headache, very sore puffy eyes

and hangover feeling…………..uggg. This is the time if anyone gives me sympathy

or a problem occurs at work, that I want to lie down on the floor and cry my

heart out – I’ve been close a couple of times. My staff are really good and

know to just leave and give me some breathing space.

Regards,

Rodorbal Labradors & Dachshund Smooths Australia

www.geocities.com/rodorbal

http://au./group/Ozlabradors/

www.labradata.com

_____

From: [mailto: ] On Behalf Of Tammy

Ferns

Sent: Tuesday, 9 October 2007 8:54 PM

Subject: RE: [ ] Side effects questions - Gleevec

Thank you for all the encouraging words. I need them. I think, besides the

physical pain, my own personal emotional pain (roller coaster) isn't helping

with my whole overall person.

I never thought about it as - the side effects let me know it is working.

That helps. Another 'part' of the problem is, I wasn't really sick BEFORE

this diagnosis! The meds are actually making me feel worse than I felt

before. Though I KNOW the inside of my body wouldn't agree.

Thanks again,

Tammy

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Liddy

Sent: Monday, October 08, 2007 10:56 PM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] Side effects questions - Gleevec

Hi Tammy,

Well I have been on Gleevac since early 2003 and I must say I have found the

side effects very minimal. I had the puffy eyes for awhile, and sometimes if

I take it with a very light snack I feel a bit nauseous for awhile. Lately

I've been suffering with cramp like pain in my leg at night which is pretty

horrible but on the whole I'm sure you will find once your body adjusts the

side effects will decrease a lot.

I must admit because I spent my first year of treatment on Interferon, which

I found the side effects to be many and horrible, I have found Gleevac to be

pretty " side effect free " .

I wish you luck and hope you can find a way to get through these initial

stages cos it really will get better.

Take care

Liddy

[ ] Side effects questions - Gleevec

I know I need to ask my doctor, and I will, but that isn't until the 16th.

I'm on day 12 with the medication.

My hips hurt. My shoulders, my knees and elbows. Like I walked in a marathon

or something. Is this the bone pain? I don't know, I don't think I'm being

whiney, but everything just hurts - a little. Just enough to make me

irritable with my children. They don't want that - and neither do I. I did

call the nurse... no answer yet.

I'm not eating very well either. Nothing sounds good. I mean, I do eat

something around meal times. But not like I used to. Now I eat about 1/2

what I ate before I started the meds. Is that normal? Should I ask about

taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

Is it normal to feel like I am falling apart from the inside out? I don't

WANT to be on pain pills. They give me a headache and make me feel

hung-over.

Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

someday, I can be one with more answers... for now... ugh!

Tammy

[Guest guest]

Hi Tammy,

To echo everyone else hang in there! There is a very very good chance like

so many others your side effects will lessen over time. I also understand

what you mean about not feeling sick until starting treatment. Regardless as

long as your body tolerates it keep taking it, even with the side effects.

The majority of people on Gleevec do not keep the side effects for extended

periods of time. I am not one of them but I still think the drug is amazing

and is a life saver. One thing I have done to help with the side effects is

to take it before I go to bed at night. When I took it during the day things

were worse for me. Just hang in there things will get better;)

Terry

On 10/9/07, Malseed <rodorbal@...> wrote:

>

> Hi Tammy – I know exactly what you mean! I find of an evening, when I

> come

> inside after feeding my dogs, I am so tired that I have to lie down and

> don't want to eat and don't feel hungry (which is the complete anathema

> for

> me!) I also get the cold shivers and even though rugged up, feel like I

> can't get warm for ages.

>

> I've also found that if I don't eat a decent bowl of cereal first in the

> morning then take the Glivec that I get a splitting headache and feel

> dreadful. I also have to be careful with acidic food – so oranges and

> mandarins, fruit juice are out and my beloved vegemite.

>

> I also find how I feel each day is dependant on the quality of sleep I

> have

> the night before. Little sleep – splitting headache, very sore puffy eyes

> and hangover feeling…………..uggg. This is the time if anyone gives me

> sympathy

> or a problem occurs at work, that I want to lie down on the floor and cry

> my

> heart out – I've been close a couple of times. My staff are really good

> and

> know to just leave and give me some breathing space.

>

> Regards,

>

>

>

> Rodorbal Labradors & Dachshund Smooths Australia

>

> www.geocities.com/rodorbal

>

> http://au./group/Ozlabradors/

>

> www.labradata.com

>

> _____

>

> From: <%40> [mailto:

> <%40>] On Behalf Of Tammy

> Ferns

> Sent: Tuesday, 9 October 2007 8:54 PM

> <%40>

> Subject: RE: [ ] Side effects questions - Gleevec

>

> Thank you for all the encouraging words. I need them. I think, besides the

> physical pain, my own personal emotional pain (roller coaster) isn't

> helping

> with my whole overall person.

>

> I never thought about it as - the side effects let me know it is working.

> That helps. Another 'part' of the problem is, I wasn't really sick BEFORE

> this diagnosis! The meds are actually making me feel worse than I felt

> before. Though I KNOW the inside of my body wouldn't agree.

>

> Thanks again,

> Tammy

>

> _____

>

> From: groups (DOT) <mailto:% <%25>40> com

> [mailto:groups (DOT) <mailto:% <%25>40> com]

> On Behalf Of

> Liddy

> Sent: Monday, October 08, 2007 10:56 PM

> groups (DOT) <mailto:% <%25>40> com

> Subject: Re: [ ] Side effects questions - Gleevec

>

> Hi Tammy,

> Well I have been on Gleevac since early 2003 and I must say I have found

> the

> side effects very minimal. I had the puffy eyes for awhile, and sometimes

> if

> I take it with a very light snack I feel a bit nauseous for awhile. Lately

> I've been suffering with cramp like pain in my leg at night which is

> pretty

> horrible but on the whole I'm sure you will find once your body adjusts

> the

> side effects will decrease a lot.

> I must admit because I spent my first year of treatment on Interferon,

> which

> I found the side effects to be many and horrible, I have found Gleevac to

> be

> pretty " side effect free " .

> I wish you luck and hope you can find a way to get through these initial

> stages cos it really will get better.

> Take care

> Liddy

> [ ] Side effects questions - Gleevec

>

> I know I need to ask my doctor, and I will, but that isn't until the 16th.

> I'm on day 12 with the medication.

>

> My hips hurt. My shoulders, my knees and elbows. Like I walked in a

> marathon

> or something. Is this the bone pain? I don't know, I don't think I'm being

> whiney, but everything just hurts - a little. Just enough to make me

> irritable with my children. They don't want that - and neither do I. I did

> call the nurse... no answer yet.

>

> I'm not eating very well either. Nothing sounds good. I mean, I do eat

> something around meal times. But not like I used to. Now I eat about 1/2

> what I ate before I started the meds. Is that normal? Should I ask about

> taking a vitamin? I don't normally. WHAT IS NORMAL anymore??

>

> Is it normal to feel like I am falling apart from the inside out? I don't

> WANT to be on pain pills. They give me a headache and make me feel

> hung-over.

>

> Thanks. Sorry, I feel like I'm the one with all the questions. Maybe

> someday, I can be one with more answers... for now... ugh!

>

> Tammy

>

>

[Guest guest]

>

> Hi Tammy,

> To echo everyone else hang in there! There is a very very good

chance like

> so many others your side effects will lessen over time. I also

understand

> what you mean about not feeling sick until starting treatment.

Regardless as

> long as your body tolerates it keep taking it, even with the side

effects.

> The majority of people on Gleevec do not keep the side effects for

extended

> periods of time. ________________________________________________

Hi Tammy,

I have been taking Gleevec since April 2001, and I have seen my

side-effects cycle. That is to say, they come on strong sometimes and

then diminish. It is true that they were worse in the beginning. I

think many who have the muscle and bone pain experience that almost

unendurable pain for the first weeks of treatment as the drug attacks

the leukemic cells. Warm bubble baths seem to help my body and mind

the most during that time.

My side-effects include: fatigue, chills, bone and muscle pain,

cramps, diarrhea, nausea, puffy eyes, fragile skin and a pallid

whiteness. The skin issues, I believe are due to c-kit or PDGF

inhibitors. I'm not sure which one is responsible for turning my skin

so white and so fragile--it's been a long time since I researched the

particulars-- but I'm sure someone in this group can clarify my fuzzy

memory. By the way, memory is said by some to be affected by Gleevec

as well.

A cancer diagnosis is going to play havoc with your emotions. Try to

remember it is normal to feel a grieving for your lost health, but

take heart in the fact that Gleevec is a proven life-saver, and also

there are many more drugs in the pipeline as back-ups. It wasn't that

way six or seven years ago. I can only imagine that this trend will

continue until there's a cure.

Remember, there are no dumb questions here. We are a support group, so

please feel free to use this space to ask questions and to express

your feelings.

All best,

[Guest guest]

and Terry ,

Amen. Great advice to Tammy. Does anyone else have

night time bladder problems or is this just another

new issues taking a swing at me?

Has anyone tried any alternative treatments like

acupuncture for immunity health and pain reduction?

I'm gald to be a member of your tribe. Hang in there

all.

Chi

--- kisocean <kisocean@...> wrote:

>

> >

> > Hi Tammy,

> > To echo everyone else hang in there! There is a

> very very good

> chance like

> > so many others your side effects will lessen over

> time. I also

> understand

> > what you mean about not feeling sick until

> starting treatment.

> Regardless as

> > long as your body tolerates it keep taking it,

> even with the side

> effects.

> > The majority of people on Gleevec do not keep the

> side effects for

> extended

> > periods of time.

> ________________________________________________

>

> Hi Tammy,

>

> I have been taking Gleevec since April 2001, and I

> have seen my

> side-effects cycle. That is to say, they come on

> strong sometimes and

> then diminish. It is true that they were worse in

> the beginning. I

> think many who have the muscle and bone pain

> experience that almost

> unendurable pain for the first weeks of treatment as

> the drug attacks

> the leukemic cells. Warm bubble baths seem to help

> my body and mind

> the most during that time.

>

> My side-effects include: fatigue, chills, bone and

> muscle pain,

> cramps, diarrhea, nausea, puffy eyes, fragile skin

> and a pallid

> whiteness. The skin issues, I believe are due to

> c-kit or PDGF

> inhibitors. I'm not sure which one is responsible

> for turning my skin

> so white and so fragile--it's been a long time since

> I researched the

> particulars-- but I'm sure someone in this group can

> clarify my fuzzy

> memory. By the way, memory is said by some to be

> affected by Gleevec

> as well.

>

> A cancer diagnosis is going to play havoc with your

> emotions. Try to

> remember it is normal to feel a grieving for your

> lost health, but

> take heart in the fact that Gleevec is a proven

> life-saver, and also

> there are many more drugs in the pipeline as

> back-ups. It wasn't that

> way six or seven years ago. I can only imagine that

> this trend will

> continue until there's a cure.

>

> Remember, there are no dumb questions here. We are a

> support group, so

> please feel free to use this space to ask questions

> and to express

> your feelings.

>

> All best,

>

>

>

________________________________________________________________________________\

____

Check out the hottest 2008 models today at Autos.

http://autos./new_cars.html