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I need some input regarding Gleevec. Just dx with CML 2 weeks ago.

Waiting for Gleeved to arrive via mail order pharm. Just don't know

what to expect. Realizing that everyone is different it's scary enough

just knowing you have CML. I would like to hear positive and negative

effects of taking this drug.

Pam

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Hi Pam,

Welcome to the group. I'm sure your head is still spinning from your

diagnosis but rest assured, it does get better.

The best suggestion I can give you right now is to read the glossary

and the FAQ in the files section (to the left of the screen, click

on " files " then you'll see a bunch of different files...the Glossary

and the FAQ are fairly straight forward). Once you understand the

basic terms and acronyms, you'll feel less overwhelmed. Ask any

questions you have and remember, you're not alone. The vast majority

of people do very well on Gleevec so the stastics are on your side.

Take care,

Tracey

dx Jan 2002

>

> I need some input regarding Gleevec. Just dx with CML 2 weeks ago.

> Waiting for Gleeved to arrive via mail order pharm. Just don't know

> what to expect. Realizing that everyone is different it's scary

enough

> just knowing you have CML. I would like to hear positive and

negative

> effects of taking this drug.

> Pam

>

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Hey Pam

My name is Jane. So sorry you had to join this group but welcome

anyway and...it's not all bad. I was diagnosed in November 05.

Started Gleevec in February 06.

I take 400mg (4 tablets) every night at 8 o'clock with my evening

meal and a big glass of water. On the 2 occassions that I have

forgotten to take my tabs until much later when I wasn't hungry and

couldn't eat a full meal, I felt nauseous and generally yucky the

whole of the next day.

If I stick to my routine, the only thing I feel is really tired. I

have had the occassional muscle cramps but eating bananas seemed to

deal with them and they were not severe.

The Gleevec is certainly holding the CML at bay and I am slowly

feeling better. I decided to listen to my body and rest when I am

tired and I really believe this has helped me.

I found getting to understand the whole CML thing really difficult

and I also battled to understand what people were talking about in

the group. I discovered that if I asked the 'dumb' questions I got

really helpful replies from the people here and found out that the

questions were not as dumb as I thought. The poeple in this group

are really knowledgeable.

Many people here are writing about the major side-effects they are

suffering to the extent that I began to think that the Gleevec

wasn't working for me because I wasn't having any of them. After

talking with some of the people in the group, I realised that this

is to be expected. Why write if you are having no problems? It is

obvious (well it wasn't obvious to me at the time!) that the people

most likely to write are the people who are experiencing

difficulties. There must be thousands of people who are not writing

because they are taking Gleevec without experiencing

problems....like me and hopefully you too.

The one thing that has really pleased me is the fact that I have not

put on any weight with Gleevec. I have been fat all my life and you

are supposed to get thin when you have cancer ...right? When I read

that Gleevec can cause weight gain I was really angry - howcome I

get the one cancer that causes you to GAIN weight???? Well, that

hasn't happened yet...and actually it doesnt matter that much really.

I hope this has bee a little bit helpful. The diagnosis is a shock

but the reality is manageable. Good luck.

Jane

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