Off Gleevec

[Guest guest]

Thanks Moe for your reply..

i was diagnosed Nov 2004 and in Jan 03 they put me on Gleevec 600mg

dose. After six months they still werent happy with the results so

they then put me on 800mg and there i stayed on it for the next

18months. Even on 800mg they still say i didnt reach to their

desired response but they had to take me back down to 600mg as my

trial had finished. They watched me closely and i just very slowly

went down. Well six months ago i discussed with my Onc (Tim )

that I wasnt coping with side effects and I wanted to drop down to

400mg. Now i do know that alot of people are on 400mg but Tim just

didnt seem to think it would hold me. After about two weeks he then

decided he would let me but just under closeful eye of him as he

would then look into me going onto the two new drugs coming out.

Sadly Australia is behind the states so its not readidly avaliable

to us. Well last week I found out he couldnt put me on it cause of

red tap so I then just broke down and said im coming off it for a

month or two. Yes he did flip out but then he has compasion and said

to go off it but contact him regulary and speak with him and have a

pcqr test every month. He mentioned the side effects could take two

or three weeks to get out of my system so after that im looking

forward to having a near normal Christmas.

Please let me know of your side effects and what youve taken and

down to help them..email me personally if you wish

(leechys@...) would love to hear from you.

Susie

PS: my Hubby too fliped out and has said to many people he wished i

didnt go off the drug but he said that he sees behind the closed

door and see's what it does to me so only I can make that decision..

Dx Nov 2004 currently on NO GLEEVEC