Re: Gleevec/Susie

[Guest guest]

> Hi my name is susie and I think this is my first time on this new

cml

> 2. I was diagnosed nov 2002 and have been on Gleevec since jan

2003.

> They first put me on 600mg and wasn't happy with results so they

put

> me on 800mg. After the two year trial they then put me on 600mg due

to

> the issue of money....since then my results have become stagnant...

> They say its doing well but they always want better. But im tired

of

> all the side effects and I hate complaining as I feel I should be

> happy that atleast we have something that keeps us alive. Gleevec

> effects me everyday, even though ive been on it for two weeks.

They

> say it will get easier..WHEN..... (Gleevec is making my life hell,

I'd

> rather just have the leukemia...but know thats not gonna happend) i

> still have nausia problems and I run to the loo too often for the

> other problems ( I take 10 nausa tabs aday to prevent vomiting )as

> well as servere achy joints ( I have between 6 - 10 pain killers

aday)

> and having to take pain killers for the pain. By afternoon i can

> either have a ten minute nap or it might go into 3 hours....Can

> someone give me advise, im not getting anywhere with my Onc...hes a

> great man and a great doctor...

> but I feel I have no conttol or even any life going on like

> this...There is a new drug on trial here in australia...but not

really

> up and running...has some one got any suggestions...as im seeing my

> Onc. in two weeks. Im suppose to take up to 4 tabs aday for fluid

> retention but I don't. But with my 6 Gleevec, 10 nausa tabs and 6

-12

> painkilers I sometimes could be taking between 20 to 30 tabs

aday...I

> can't keep going on like this...HELP...

________________________________________________

Dear Susie,

You have my sympathies. Gleevec is not an easy drug to take for many

of us. From my personal experience on 400 mg, I can manage the nausea

by taking Gleevec with Naked Food's The Green Machine. I've tried

various foods and drinks, but this seems to work best for me. I have

had diarrhea with Gleevec also, and the best thing for me is to take

two Immodium AD tablets with Gleevec in the evening. Although the

diarrhea problem doesn't happen every day, it has been occuring enough

that it makes sense to take it.

I have been given a prescription for fluid retention, but my

experience in the 4+years that I have been on Gleevec is that it

doesn't really help much, so I don't take them often. I do take

magnesium+calcium supplements for muscle cramps, and that does really

seem to make a difference.

I take Advil for pain, but I personally stay away from narcotics. Not

every one can, because the bone pain can be so debilitating. But

narcotics and other pain killers can cause depression, and I would

rather try to manage my pain in other ways because I really need to

keep an optimistic and aware state of mind. This is the way I deal

with my pain issue. It may not be for everyone. Everyone needs to deal

with pain in the way that best works for that individual.

I don't know if this helps, but despite the fact that a bad PCR or a

side-effect can still freak me out, I try to take solace in this

group, the people I love and the miraculous beauty of life. God only

gives us our days one by one...and I try to take them that way as much

as possible. I think that we all still have dark days.

I think the hardest thing for me is the fatigue. I have not found

anything that really helps me with that. Sometimes I have to slow down

and just accept that I need to rest.

The fact that all of these side effects cannot be managed simply adds

to my frustration. It's hard, Susie, but life is never easy. God Bless

you and give you comfort.

With warm Regards,