Hi Call Me Lucky. I get it the side effects of Gleevec " are wearing on me."
" the reality is that I do have insurance and I don't want to suffer if there is a better option. Should I ever lose my insurance and I can only afford Gleevec, then I can consider going back and dealing with the issues, but for now, if I can improve my quality of life, I may take that chance. Hopefully I won't regret it. No decision has been made yet, have an appt in a few weeks to discuss."
I can truly understand your thinking, Yes you could go back on Gleevec, you have insurance and you need some relief!!
I'm totally with you on the quality of life. That is what I keep telling my doctor's, when it comes time that I can not have a quality of life, and no hope. I would prefer to turn up the morphine. I will soon be 64 years old and I have seen some of my friends with cancer chose the chemo and radiation and surgery for a year to 2 years and suffer horribly and still die while other recovered. So at least we still have some choices and it is your choice in the end. AT least I like to think the doctor's will give us some choices. That is why I went for a second opinion to a doctor outside of my ONC. My previous Onc was totally insistent, on..... Second doctor was of a totally different attitude. That way the first doctor can't say well you are the patent I am the doctor, therefore....
My son was recently in IU Hospital for 30 day on life support. The have many students from all over the world. When they, the doctors, nurses, students, came in his hospital room, they come in herds. You will have one group of may 6 or 8 and they will discuss the issue and disagree within their own group. Then you will have another group, same thing. Not often did they even agree within their own group. Sometimes one group would change a medicine, then the other group would get mad. then & they would change it back and forth. It was like a circus. One nurse said they really don't know what is wrong with 1/2 the patients here. Plus we took care of my mother for 3 years and my husband almost died from an allergic reaction to an arthritis pill, that I tried for 2 months to have his primary doctor who prescribed it, to consider taking him off it, but instead he just kept doubled the dose and kept adding other medicine. My husband labs became a mess, thought maybe he even had cancer. Thought I was going to have to put him in a nursing home. In the end I weened him off the medicine and he was just fine except for his arthritis, so there you go!! So I guess that what I am saying for myself, is do my home work make my decisionion and then let it go. I guess one could drive themselves crazy.
There is certainly no crystal ball, and different things work differently for each person. However, I read one post, can't remember where, but someone did the samething went to newer drug and said for some reason they had to go back on Gleevec and had new or different side effects on the Gleevec. and thought it was because they had introduced themselves to new chemicals that still had effected them. I don't know my old ONC said all I would have to do is go off Gleevec for two week before taking a new drug, plus take EKG'S because of QT and I guess Tasigna is prone to liver issues, at least I have been told.
But for me I really don't know if some of my side effects are from Gleevec or old age or other things, and I can live with them. I do not want to go into uncharted territory and like your doc said lots more data out on Gleevec, at least that was how I was thinking, I know what to expect. My old ONC thinks more like you go with the newer drugs. If things were to change drastically I would consider it.
No one truly know the outcome of each individual with the different TKI drugs, so go with what gives you peace and at least you tried what ever the outcome!
P.S. Sunday I sent an email to Seattle Cancer Care, one of the leading cancer hospital in the US. The very next day the doctor from Seattle tried to call me but I was home. He tried to call me yesterday and I was gone. Hopefully I will be able to touch base with him to day.
That is another option. These doctor from the leading cancer hospitals in the U.S. are very quick to respond and will answer your question.
I guess I have been that way thru out my life just go straight to the top!!
Good Luck, Pam