Re: Down to 4

[Guest guest]

At 07:47 AM 8/22/05 +0000, you wrote:

> I was diagnosed nov 02 and went on trial

>with 600mg. Obviously he wasnt happy as he six months later put me on

>800mg. After trial he put me down to six. Since I started Gleevec

>besides vomiting and diareah I have servere Joint aches. They just

>dont seem to be getting any better. Well now he is saying I can go

>down to four tabs but not by his choice but said for me to choose

>quality over quantity. He is worried though that four wont hold my

>Leukemia cell and if it starts to go up it wont be so simple just

>adding the extra gleevec. He is worried it will go to Acute.

Hi Susie,

I can't really help with suggestions about the joint pain because I don't

experience that, but others on the list who have that problem will respond

and let you know what they do. A small % of people do have severe

bone/joint pain on Gleevec....which might even be a valid reason to switch

to another drug (like BMS or AMN) when you have that option.

I do have a couple questions about your dose. When you started, was there a

particular reason that you started on 600mg (like any signs of being late

chronic or accelerated) or what this just a trial.

The usual dose for chronic patients is 400mg and many stay on that dose.

What has your response been on 600mg.......are you CCR? neg FISH? what

level of remission have you achieved?

Many people (I think at least 1/3) who started a chronic trial at 800mg

could not stay on that dose and had to have it reduced....so you are not

alone. I have known patients who got a good response at a higher dose, then

lowered the dose because of the side effects and they are doing fine. So

the answer to your question really depends on the kind of response you have

had to Gleevec.......and if you have any sign pointing toward acceleration.

There is no reason that someone can't try a lower dose, and then later

increase the dose again.

are you getting pcr testing done? this gives you a number to follow and you

can tell you response to treatment. How often do you have any

testing.....like bmb? fish? pcr?

Again 400mg is the standard dose for chronic phase CML....and most folks

are being treated on this dose.......so your doctor needs to give you real

'reasons' for what he is saying.

C.

[Guest guest]

Hi Susie,

I too have joint pain. I take Celebrex and it really does help me.

This is one of the drugs that can cause heart problems. I checked

with my cardiologist as well as my other doctors and it was deceided

that there was little risk, at least in my case, and countinued to

take Celebrex. I have taken Celebrex (400mg daily) for two years now

with no problems. Check with your doctor and see if you could at

least try Celebrex, but make sure your doctor feels it would be safe

for you.

Take care,

M

In , " Susie " <leechys@b...> wrote:

> Hi its been awhile since ive posted..but im asking for some comfort

> in

> the decision that ive made. I was diagnosed nov 02 and went on

trial

> with 600mg. Obviously he wasnt happy as he six months later put me

on

> 800mg. After trial he put me down to six. Since I started Gleevec

> besides vomiting and diareah I have servere Joint aches. They just

> dont seem to be getting any better. Well now he is saying I can go

> down to four tabs but not by his choice but said for me to choose

> quality over quantity. He is worried though that four wont hold my

> Leukemia cell and if it starts to go up it wont be so simple just

> adding the extra gleevec. He is worried it will go to Acute. I

came

> home all disolutioned and although my hubby wishes for me to stay

on

> 6

> ive now gone down to four as I just cant cope anymore with the

pain

> that I get...Has anyone else had this side effect or have had same

> experience with the doctor....I feel now he is doing his own

little

> trial to see whether i stay chronic on 400mg.

>

> Susie Dxd 2002