Re: Re: Coming of Gleevec

[Guest guest]

Hi Susie it's Moe in VT again. I've been waiting to hear how your vacation was.

It sounds wonderful. I'm sorry you had such a bad time going back on but I'm not

surprised. Today is my 3rd yr. with CML. I too have all the side effects except

for the joint pains. I don't have them to often. Thank God. I too hate taking it

more and more. My husband has been watching me like a hawk to make sure I take

it. I think about my options on a reqular basis. I have a 100% match in an older

brother but I don't want a bone marrow transplant. I guess I'm stuck on Gleevec.

We talked to my Dr. two weeks ago when I had my latest bmb and he doesn't think

I should switch because I'm doing so well on Gleevec. I feel like maybe I'm just

a cry baby or not a strong person when there are others in such a fight for

their life. But then again this is my life and I miss the old Moe and the life I

had so much. I accidently deleted you from my instant messanger. If you want to

send it to me again we could talk

some evenings if you'd like. It's nice to know others are in my place. Thanks

for posting. I know that all that stuff others take might work for them but

that's them and I don't want to put anything more into my body than I have to.

Email me when you can. Nice to see you on again. Good luck and lots of prayers.

Susie <leechys@...> wrote:

>

> I am usually a lurker to this group and the other cml group. I

read

> the post but I don't often post. Actually it has been so long that

I

> forgot my password and id. Anyway....

>

> My question is.... I have been on Gleevec for almost three years

now

> and have had great results...My doctor says that I am in

remission.

> Yeah....I have gotten my number from Zavie... Yippee

>

> Despite being on Gleevec so long, I still suffer with the

terriable

> side effects. In the past three years, I have never really been of

> Gleevec except maybe for a week to let my counts rebound. This

month

> I could no longer tolerate it anymore. I missed my gleevec for a

> whole week because of a mess up with my insurance, they changed

drug

> companies and the new company decided they would not cover my

drug.

> Finally got that straightened out, and then got a bad cases of

food

> poisoning, that knocked me out for a week, and thus I wasn't able

to

> take any Gleevec.

>

> My whole point to all this After I got over the food poisonong i

> haven't been able to bring myself to take my gleevec. I love not

> being nausated, not having the hershey squirts all the time. I

have

> more energy then I ever have had. No edema, no nothing. I put my

self

> on a Gleevec break....

>

> Has anyone done this? The side effects from the drugs for me are

> sometimes severe and even though I have told my Dr.I don't think

she

> believes me. The last time she told me that she could not see a

> reason for my side effects, that it could be the drugs.

>

> I have really had it. Any suggestions to deal with all this.

>

> in Pa

>

TRACY,

I TOO HAVE BEEN ON GLEEVEC FOR 3 YEARS AND MY SIDE EFFECTS OF

VOMITING DIAREAH JOINT PAIN AND MUCH MORE GOT THE BETTER OF ME END

OF NOVEMBER LAST YEAR. I REFUSED TO TAKE IT ANYMORE. I WENT OFF IT

FOR TWO MONTHS AND I HAD A WONDERFUL TIME. SO MUCH ENERGY NO MORE

VOMITING NO JOINT ACHE OR DIAREAH. WELL FEB 1stCAME ROUND TOO FAST,

I PROMISED MY DOCTOR TIM HUGHES AND MY HUBBY THAT I WOULD GO BACK ON

IT AS THEY THOUGHT I WAS PUSHING IT BEING OFF IT FOR TWO MONTHS.

WELL IM SORRY TO SAY. WITHIN THREE HOURS OF TAKING GLEEVEC I WAS ON

THE TOILET, PUFFY FINGERS AND THEN BY MORNING I STRUGGLED TO GET OUT

OF BED, THEN CAME THE VOMITING AND DIAREAH ALL OVER AGAIN. THE THING

IS, IS TO GET A GOOD SYMPERPHETIC DOCTOR BEHIND YOU WHERE YOU CAN

TALK YOUR SIDE EFFECTS THROUGH AND THAT THEY HAVE COMPASSION FOR

YOU. IM STILL ON THE ROAD OF THE UNKNOWN, IM SEEING TIM IN TWO WEEKS

SO IM STILL UNDECEISIVE WHAT IM GONNA DO...I AM AT THE POINT IM

GONNA COME OFF GLEEVEC TILL ONE OF THE NEW ONES ARE AVALIABLE TO ME

HERE IN AUSTRALIA.

HOPE ALL GOES WELL WITH YOU AND HOPEFULLY YOU GET SOME SYMPERPHY

FROM YOUR DOCTOR.

SUSIE LEECH

DX NOV 2002