Re: Having major muscle/joint pains...

[Guest guest]

Hi Alice, those side effects sure can be tough! I started on Gleeved in a trial

for it, and the dose was 600mg. My side effects lasted about two months before

my body finally adapted to it. Headaches, nausea, heart burn, diarrhea, and

finally a rash. the rash lasted longer, and was the worst part of Gleevec.

Give it a couple of months, I'm sure things will settle down and you will feel

better. Good Luck, Bobby

ablarson05 <ablarson05@...> wrote: Hi everyone! I hope you all

enjoyed the holiday. Well, I've been on

Gleevec for 10 days now, and boy am I feeling the side effects!! I had

nausea from the word go, but for the past few days I've been having

muscle/joint pain behind my knees and now in my calves. And today I

look like the Michelin marshmallow man with my puffy eyes and swollen

ankles. Geez! All the things I read say that the side effects will

go away " with time. " Well, how long is that " time " ?? Months? Years?

Can anyone share how long they experienced all of these side effects at

once and when/if they will ever go away? Thanks, guys! Sorry to be

complaining!

Alice

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840 - Zavie's Zero Club

09/2006 - out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

[Guest guest]

Alice, Sorry to tell ya but I suffered with the side effects the whole time I

took Gleevec which was four years! Some people had better luck with it though.

Good luck!

Hugs,

From: rcd1929@...

Date: Sun, 6 Jul 2008 19:13:29 -0700

Subject: Re: [ ] Having major muscle/joint pains...

Hi Alice, those side effects sure can be tough! I started on

Gleeved in a trial for it, and the dose was 600mg. My side effects lasted about

two months before my body finally adapted to it. Headaches, nausea, heart burn,

diarrhea, and finally a rash. the rash lasted longer, and was the worst part of

Gleevec. Give it a couple of months, I'm sure things will settle down and you

will feel better. Good Luck, Bobby

ablarson05 <ablarson05@...> wrote: Hi everyone! I hope you all

enjoyed the holiday. Well, I've been on

Gleevec for 10 days now, and boy am I feeling the side effects!! I had

nausea from the word go, but for the past few days I've been having

muscle/joint pain behind my knees and now in my calves. And today I

look like the Michelin marshmallow man with my puffy eyes and swollen

ankles. Geez! All the things I read say that the side effects will

go away " with time. " Well, how long is that " time " ?? Months? Years?

Can anyone share how long they experienced all of these side effects at

once and when/if they will ever go away? Thanks, guys! Sorry to be

complaining!

Alice

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840 - Zavie's Zero Club

09/2006 - out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

[Guest guest]

Those side effects last for different lengths of time with different people but

there are some remedies. For example, the puffiness is edema or rentention of

water which can be handled with Lasix or another diuretic which your onc can

prescribe along with Potassium. There are some cosmetic remedies for the puffy

eyes, too, including icy cold eye masks or cold packs in the morning (even ice

in a washcloth) will help.

Muscle and joint pain may be remedied with OTC pain relievers like Aleve or

Ibuprofen. Tylenol taken in doses no larger than that stated in the directions

on the bottle. Also, I have found Icy Hot pain patches to help -- it's deep

heat that lasts for 8 hours. Also BenGay makes patches or you can use the deep

heat salves.

Best of luck. You can definitely cut down on the discomfort until it goes away

on its own.

Cheers,

[ ] Having major muscle/joint pains...

Hi everyone! I hope you all enjoyed the holiday. Well, I've been on

Gleevec for 10 days now, and boy am I feeling the side effects!! I had

nausea from the word go, but for the past few days I've been having

muscle/joint pain behind my knees and now in my calves. And today I

look like the Michelin marshmallow man with my puffy eyes and swollen

ankles. Geez! All the things I read say that the side effects will

go away " with time. " Well, how long is that " time " ?? Months? Years?

Can anyone share how long they experienced all of these side effects at

once and when/if they will ever go away? Thanks, guys! Sorry to be

complaining!

Alice

[Guest guest]

Thanks, . I'll definitely try your suggestions.

>

> Those side effects last for different lengths of time with

different people but there are some remedies. For example, the

puffiness is edema or rentention of water which can be handled with

Lasix or another diuretic which your onc can prescribe along with

Potassium. There are some cosmetic remedies for the puffy eyes, too,

including icy cold eye masks or cold packs in the morning (even ice

in a washcloth) will help.

>

> Muscle and joint pain may be remedied with OTC pain relievers like

Aleve or Ibuprofen. Tylenol taken in doses no larger than that

stated in the directions on the bottle. Also, I have found Icy Hot

pain patches to help -- it's deep heat that lasts for 8 hours. Also

BenGay makes patches or you can use the deep heat salves.

>

> Best of luck. You can definitely cut down on the discomfort until

it goes away on its own.

>

> Cheers,

>

> [ ] Having major muscle/joint pains...

>

>

> Hi everyone! I hope you all enjoyed the holiday. Well, I've been

on

> Gleevec for 10 days now, and boy am I feeling the side effects!!

I had

> nausea from the word go, but for the past few days I've been

having

> muscle/joint pain behind my knees and now in my calves. And today

I

> look like the Michelin marshmallow man with my puffy eyes and

swollen

> ankles. Geez! All the things I read say that the side effects

will

> go away " with time. " Well, how long is that " time " ?? Months?

Years?

> Can anyone share how long they experienced all of these side

effects at

> once and when/if they will ever go away? Thanks, guys! Sorry to

be

> complaining!

>

> Alice

>

>

>

>

>

>

[Guest guest]

Hi Alice,

I had also bone/joint/muscle pain in the first 2 weeks, but it went

away. Drink a lot, be a little careful with diuretics until you are in

full remission (talk with your dr), make sure you drink a lot. Gleevec

is killing a lot of leukemia cells (what's good) and the waste is

clogging your system for some time. I was taking allopurinol in the

first month, to help the kidneys get rid of the waste. I took

ibuprofen for the joint pain that was pretty bad. For me the puffy

eyes come and go, not a big deal so far.

It is going to get better, keep your spirits hith,

Marcos.

On Sun, Jul 6, 2008 at 7:05 PM, ablarson05 <ablarson05@...> wrote:

> Hi everyone! I hope you all enjoyed the holiday. Well, I've been on

> Gleevec for 10 days now, and boy am I feeling the side effects!! I had

> nausea from the word go, but for the past few days I've been having

> muscle/joint pain behind my knees and now in my calves. And today I

> look like the Michelin marshmallow man with my puffy eyes and swollen

> ankles. Geez! All the things I read say that the side effects will

> go away " with time. " Well, how long is that " time " ?? Months? Years?

> Can anyone share how long they experienced all of these side effects at

> once and when/if they will ever go away? Thanks, guys! Sorry to be

> complaining!

>

> Alice

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

I've been on Gleevec since October of 2006 and I am still having some

side effects, though they are much improved. Puffiness gets a lot

better. I have diarrhea and cramping in my feet and legs pretty

often. I take calcium/magnesium and that seems to help a lot. Also I

always keep imodium with me! I get an awful tummyache if I don't take

Gleevec with food. It is just one of those things--it is much better.

The tummyache lasts about 4 hours and not much seems to help it.

Otherwise, I am pretty much symptom free. Oh yes, I do get more tired

than usual. I tend to poop out at the end of the day--I used to have

go go go energy, and now I just want to collapse. But, I am working

full time and raising 2 wild and crazy boys (10 and 13), and 3 wild and

crazy dogs (toy fox terrier, wire fox terrier and miniature pinscher!),

so I have my plate pretty full! I love it. Gleevec is truly a

wonderful drug.

Vicki

>

> Hi everyone! I hope you all enjoyed the holiday. Well, I've been on

> Gleevec for 10 days now, and boy am I feeling the side effects!! I

had

> nausea from the word go, but for the past few days I've been having

> muscle/joint pain behind my knees and now in my calves. And today I

> look like the Michelin marshmallow man with my puffy eyes and swollen

> ankles. Geez! All the things I read say that the side effects

will

> go away " with time. " Well, how long is that " time " ?? Months? Years?

> Can anyone share how long they experienced all of these side effects

at

> once and when/if they will ever go away? Thanks, guys! Sorry to be

> complaining!

>

> Alice

>

[Guest guest]

-Hi all, I have been on Gleevec since Sept.2006 and I have the puffy

eyes still. Some days they are worse than others but to me it is a

sign that it's going to be a feel bad day. The more puffy the worse

the feel bad day is.

-- In , " vickistu " <vickistu@...> wrote:

>

> I've been on Gleevec since October of 2006 and I am still having some

> side effects, though they are much improved. Puffiness gets a lot

> better. I have diarrhea and cramping in my feet and legs pretty

> often. I take calcium/magnesium and that seems to help a lot. Also I

> always keep imodium with me! I get an awful tummyache if I don't take

> Gleevec with food. It is just one of those things--it is much better.

> The tummyache lasts about 4 hours and not much seems to help it.

> Otherwise, I am pretty much symptom free. Oh yes, I do get more tired

> than usual. I tend to poop out at the end of the day--I used to have

> go go go energy, and now I just want to collapse. But, I am working

> full time and raising 2 wild and crazy boys (10 and 13), and 3 wild and

> crazy dogs (toy fox terrier, wire fox terrier and miniature pinscher!),

> so I have my plate pretty full! I love it. Gleevec is truly a

> wonderful drug.

>

> Vicki

>

>

> >

> > Hi everyone! I hope you all enjoyed the holiday. Well, I've been on

> > Gleevec for 10 days now, and boy am I feeling the side effects!! I

> had

> > nausea from the word go, but for the past few days I've been having

> > muscle/joint pain behind my knees and now in my calves. And today I

> > look like the Michelin marshmallow man with my puffy eyes and swollen

> > ankles. Geez! All the things I read say that the side effects

> will

> > go away " with time. " Well, how long is that " time " ?? Months? Years?

> > Can anyone share how long they experienced all of these side effects

> at

> > once and when/if they will ever go away? Thanks, guys! Sorry to be

> > complaining!

> >

> > Alice

> >

>

[Guest guest]

Hi Alice, my boyfriend has been on Gleevec for almost a month now, and

he too is experiencing major muscle and joint pain. It seems to be in

his left leg, and it comes and goes. He has a business and works on

his feet all day so he is really struggling with it.

He takes to Advils for the pain...can anybody let me know if he should

not be taking Advil? would tylenol be better?

Anyways, we are hoping that he ends being one of those people that get

used to the drug and the pain will alleviate with time.

But he is really suffering, and I know it must be so painful for you.

He gets temporary relief when I massage him, but that's about it.

What have you been doing for your pain, and do you find it alters from

day to day.

Good Luck!

Steph

>

> Hi everyone! I hope you all enjoyed the holiday. Well, I've been on

> Gleevec for 10 days now, and boy am I feeling the side effects!! I had

> nausea from the word go, but for the past few days I've been having

> muscle/joint pain behind my knees and now in my calves. And today I

> look like the Michelin marshmallow man with my puffy eyes and swollen

> ankles. Geez! All the things I read say that the side effects will

> go away " with time. " Well, how long is that " time " ?? Months? Years?

> Can anyone share how long they experienced all of these side effects at

> once and when/if they will ever go away? Thanks, guys! Sorry to be

> complaining!

>

> Alice

>

[Guest guest]

Not Tylenol check with onc. What does 400 /800. In the beginning you are killing

he bad white cells. My onc said it produced a gas thus the pain. I took 300

Allopurinol took care of the pain.Some onc do not prescribe this in the

beginning.

It gets better after you get your White count down .He should have the count

down by now.

[ ] Re: Having major muscle/joint pains...

Hi Alice, my boyfriend has been on Gleevec for almost a month now, and

he too is experiencing major muscle and joint pain. It seems to be in

his left leg, and it comes and goes. He has a business and works on

his feet all day so he is really struggling with it.

He takes to Advils for the pain...can anybody let me know if he should

not be taking Advil? would tylenol be better?

Anyways, we are hoping that he ends being one of those people that get

used to the drug and the pain will alleviate with time.

But he is really suffering, and I know it must be so painful for you.

He gets temporary relief when I massage him, but that's about it.

What have you been doing for your pain, and do you find it alters from

day to day.

Good Luck!

Steph

>

> Hi everyone! I hope you all enjoyed the holiday. Well, I've been on

> Gleevec for 10 days now, and boy am I feeling the side effects!! I had

> nausea from the word go, but for the past few days I've been having

> muscle/joint pain behind my knees and now in my calves. And today I

> look like the Michelin marshmallow man with my puffy eyes and swollen

> ankles. Geez! All the things I read say that the side effects will

> go away " with time. " Well, how long is that " time " ?? Months? Years?

> Can anyone share how long they experienced all of these side effects at

> once and when/if they will ever go away? Thanks, guys! Sorry to be

> complaining!

>

> Alice

>

[Guest guest]

Steph

Any drugs - have the A-Ok from your medical team including the dose

Many drugs interact with glivec

Sue

[Guest guest]

Hi, I have some exercises to do for vertigo, but can't send them, not smart

enough. I have them in a file in Word Perfect and don't know how to email them.

I'm working on it, my daughter said they stopped her vertigo so I thought I

would pass them on. Maybe I'll just type them, but they come with pictures and

I can't type them!! Bobby

Sue <hollie@...> wrote: Steph

Any drugs - have the A-Ok from your medical team including the dose

Many drugs interact with glivec

Sue

[Guest guest]

Bobby

If you can send exercises for vertigo it would be fantastically beneficial

Just type them out and we all can get the benefit

Sue

[Guest guest]

I WILL SEND THE ATTACHMENT TO TRACEY, SHE SAID SHE WOULD POST IT IN THE FILES.

THERE IS NOT ALOT TO TYPE OUT, BUT THERE ARE PICTURES TO SHOW YOU THE RIGHT

POSITION, SO THEY ARE IMMPORTANT. BOBBY

Sue <hollie@...> wrote: Bobby

If you can send exercises for vertigo it would be fantastically beneficial

Just type them out and we all can get the benefit

Sue