Re: Off Gleevec

[Guest guest]

Hi Susie,

I'm sorry you are going through so much!

As far as the side effects, I would make sure I was doing everything

possible to alleviate the problems.

Do you take Imodium for the diarrhea? Are there certain foods that

make it worst? Anything greasy does it for me. And meat is

difficult to digest too.

Have you tried to break up your dose of Gleevec, and spread it out

throughout the day? Maybe one with breakfast, one with lunch, two

with dinner, etc? I do much better if I have a protein along with

the pills. If I do a carb, like bread or fruit, it always gives me

problems.

Have you tried Advil for the aches? Hot baths? When I was hurting

badly, in the beginning, I went out and bought indulgent bath

goodies, like body wash that smells like cinnamon buns. I was in

heaven! Now, when I get the Gleevec chills and just can't get warm,

I run my bath, relax, and it's kinda my meditation time too.

Anything to de-stress.

I have also found that when I walk for exercise, I do much better

with the sore, achiness. I do have to push myself though.

I would just try to hold out until BMS or AMN comes to market. Then,

you can switch over to it, and see if it does better for you.

Hope this helps,

Lynn

Dx-d 12/10/03

>

> Hey there, once again im posting a message, something i dont do

very

> often but im in a tug of war at moment and could do with some help

> and encouragement. Ive been on Gleevec for three years now. The Onc

> (Tim ) says im in ok range but he wants me lower so I can

have

> better risistance. But my problem is I suffer so much even after

> three years with diareah, vomiting, joint ache, loss of vision,

many

> days walking like a 60 year old (im only 42) 5 out of 7 days my

feet

> feel like im walking on glass. Theyve checked me out for many

things

> but have just come down as side effects to Gleevec. My delemia

> is...even though im havning many side effects Gleevec is working

for

> me...But hey, sometimes we have to choose quality not quantity of

> life. Tim tried hard to get me on one of the two new drugs that is

> coming to Australia but with all the red tape Tim said he can't get

> me on there. So when Tim told me that I lost it..ive now taken

> myself off Gleevec to give my body a break. Tim isnt happy about it

> but he is i must say just the best Onc and very supportive. Im

> wondering if any of you guys have had my same delema and how did

you

> cope with it. My emotions are up and down so much...HELP..(please

> remember when you reply that australia is behind other countries so

> at this stage Gleevec is the only avaliable new drug avaliable to

us)

> Susie DX Nov 2002

>

[Guest guest]

At 01:20 AM 12/1/05 +0000, you wrote:

> But my problem is I suffer so much even after

>three years with diareah, vomiting, joint ache, loss of vision, many

>days walking like a 60 year old (im only 42) 5 out of 7 days my feet

>feel like im walking on glass. Theyve checked me out for many things

>but have just come down as side effects to Gleevec.

Hi Susie,

You got lots of good suggestions from Lynn.

I think that diet is really impt if you are having digestive upsets. Go with

an alkaline diet.....veggies, fruits, some of the grains........less meat, etc.

You can find alkaline food lists on the net. Too much acid (which the drug

is) in your body can cause a lot of problems.

Also, seeing as how you have decided to take yourself off drug (not

recommended but others have done that briefly).....you might find that

you have fewer side effects when you resume the drug. Let your onc

monitor you closely.....some folks have relapsed when off drug.

Best wishes........keep a positive attitude.

C.

[Guest guest]

Susie, How much Gleevecs do you take? I think I missed that. I too have lots of

side effects and would love to take a break too but my husband gets too upset

about even the thought of it so I just keep taking the junk. Enjoy your break

and I'll say a prayer for you. Let me know how you feel while you're off it.

Moe

VT

[Guest guest]

Merry Christmas Susie,

I hope this finds you feeling WONDERFUL since you're off this stuff for the

holiday. Let me know what it's like to spend Christmas as a real person again.

God Bless. Moe in Vt

Susie <leechys@...> wrote:

Hi guys, i posted three weeks ago that i was going off Gleevec to give

my body some time to recover from my side effects. I feel absolutely

wonderful. I'm walking again in the mornings, i can even run. no more

throwing up, no joint pain, im cleaning house...walls, ovens and even

on top of my ceiling fans. I wake up and i jump out of bed and go for

my walk first thing. I almost can forget that ive got cml. Lifes great,

the sad thing is i know its gonna come to a end. The doctor has given

me till the end of the month before i have to go on them again...im

gonna try another month..maybe. Im gonna see what my results are like.

But just wanted to let you know that all is well and going strong. Ive

had two bruises come up so im just keeping a eye on them ... thanks for

everyones support through this time.. ill keep in touch..

susie dx nov 02

at present off Gleevec due to side effects.

[Guest guest]

Hello all,

I am on and off gleevec since i ended up in hospital last August

because the 400mg Gleevec proved to be too strong for me which

resulted in terrible headaches and my white blood count was

dangerousely low.

My doc suggested to take the pill every second day which was ok for a

while but then the headaches started again, impossible to work,

impossible to think straight, and always tired.

I stopped taking gleevec for 2 weeks, the headache dissapeared, my

blood count was satisfactory.

Now I'm taking Gleevec every 3th day, let's wait and see how I respond.

Early January i have my second Bone marrow biopsy and hopefully I will

get the approval for a lower dose of gleevec.

I obviousely respond to the medication just that it seems to be too

strong for me.

I hope you all had a lovely christmas, lots of presents and yesssss,

deliciuos food.

Wishing you all well

Ursula

In , " dantzigr " <dantzigr@a...> wrote:

>

> How many cml'ers out there take IM breaks? sanctioned by your doctor

> or not? Lately I have been experiencing lots of " typical " side

> effects - diareaha (sp), bloating, gas, blurred vision, itchy rash.

> I have been on IM since 3/02 and PCR undectable since 6/02. Never

> had these side effects before, or at least all of them at the same

> time, and for more than 2 months.

>

> How long is the typical IM break?

>

>

>

>

>

> > >

> > > Hi guys, i posted three weeks ago that i was going off Gleevec

> to

> > give

> > > my body some time to recover from my side effects. I feel

> > absolutely

> > > wonderful. I'm walking again in the mornings, i can even run. no

> > more

> > > throwing up, no joint pain, im cleaning house...walls, ovens and

> > even

> > > on top of my ceiling fans. I wake up and i jump out of bed and

> go

> > for

> > > my walk first thing. I almost can forget that ive got cml. Lifes

> > great,

> > > the sad thing is i know its gonna come to a end. The doctor has

> > given

> > > me till the end of the month before i have to go on them

> > again...im

> > > gonna try another month..maybe. Im gonna see what my results are

> > like.

> > > But just wanted to let you know that all is well and going

> strong.

> > Ive

> > > had two bruises come up so im just keeping a eye on them ...

> > thanks for

> > > everyones support through this time.. ill keep in touch..

> > >

> > > susie dx nov 02

> > > at present off Gleevec due to side effects.

> > >

> >

>