Hi Linda: I started on Gleevec in Oct of 2000, and I was undetectable by 2002. I stayed on my Gleevec with all its side effects up until Feb of 2018. I had developed real bad edema through my body. You could see it in my face, and bad orbital edema also. My doctor stopped my Gleevec, and I went TFR in Feb of 2018. As of now I have been in remission since then. I get tested on a regular basis in case I become detectable being off treatment. I get tested this Feb, and it will be 7 years for me if I am still PCRU. We have to remember that those cancer cells are lurking all the time, but just not enough to show up on testing which makes us undetectable. The good news is that we can always start treatment again if those cancer cells start to show up, and get back to a undetected status. In my case, I was told if I lose my present response that I will be put on Tasigna because of the Gleevec and the Edema. All drugs have side effects, and it all depends on what we can handle. I do think that some patients try to go TFR too soon thinking they are clean and then they find out they were not ready. You did not say when you started the Gleevec, and how long you have been on it. It is up to your doctor to decide according to your test results over a period of time. I wish you the best, and I believe in Prayer.

Thanks for sharing your story. It gives me encouragement. I was diagnosed Dec 2019 and started on 400 mg Gleevec on Jan 6, 2020. About 6 months ago I dropped dosage to 200 mg and it did help quite a bit but my side effects continued. I am so happy to feel good. I still have some issues but nothing it was. Just enjoying each day and dealing with whatever comes my way. Stay positive!