How to take Gleevec

[Guest guest]

Dear Sue,

That seems to work for you, but I can tell you I tried several ways of

taking Gleevec and I had to have a full meal with protein and I still tossed my

cookies sometimes in the middle of a meal. That was on 600 mg. I had better

luck with 400 mg., but it was my choice to ask for 600 mg. Never budged my

barometer off 100%. If Dr. Shah is right, CHR is a good place to be, so I quit

worrying about it. If it happens, then I will be overjoyed, and if it doesn't,

I can say I gave it my best shot. I tried every candy in the candy store, so to

speak. So far, SKI 606 has worked for only half the results, but I am willing

to try a little longer and then look around in the candy case to see if there is

something I haven't tried yet. Bobby and I are still running neck and neck in

the race for trial queen, maybe she is a nose ahead.

The Ariad trial is a very small dose, the second phase is about to start

with a larger dose. The doctors want to wait for the CML trailers to get a

larger dose, because you have to stay with whatever dose the protocol calls for,

as I understand it. The doctor can decrease it and override the protocol, but

they can't increase it; hence, the reason for not opening up the first phase to

higher number of patients. It's a trial to see how much a patient can tolerate.

If anyone has information to better explain it better, it would not offend me.

If somewhere down the line we would become resistant, we still have several

other drugs in the bag to try. When we were in Inteferon, there was no bag,

that was the end of the line, except for Hydrea, and that was merely a bandaid,

my dosage had to be altered every week, according to my WBC. I know a man who

lived seven years on Hydrea, but he didn't want to try Inteferon. Some people

who chose to stay on INF survived, even to today and I tip my hat to them all.

I correspond with a woman in Canada who took it for a while and has been in

remission for years. She sees her oncologist once a year and has not been on

INF at all for the past several years, since we have been corresponding. Her

husband, who does not have CML is in worse shape than she is, he's the one who

is always sick. Go figure.

For everyone who is able to take the higher doses of Gleevec, I hope the

trend continues and I'm glad it works for you, but we all know it doesn't work

for everyone. I admire you for being able to get up, take care of your beloved

horses and then take a train to and from work for several hours a day. Wow,

that takes a lot of fortitude. I know you have to prepare dinner when you

return in the evening, so that doesn't leave you much time to spend on the

computer, but you have been faithful to the group and responded time and again

to others.

Many, many blessings,

Lottie