Hi Bill: For some reason TFR had never been mentioned to me until I got the bad Edema. I guess they felt that if I was doing good to keep taking my Gleevec so I could maintain my undetectable status. I think sometimes people tend to go TFR too soon when they have good results, but unfortunately those cancer cells are still lurking even if they are not at the surface to cause you to lose your good response. I still get nervous everytime I go for my testing knowing I am not taking a TKI any longer. I just keep trusting God to get me through each time.

Bill, I just read about TFR, treatment free remission. I have CML and am in remission. My hematologist agreed to changing my Sprycel dosage from 100 mg to 50. I have not started the 50 yet. I had to hold meds for 8 weeks due to surgery and am still in remission. I am going to speak to him about TFR. Congratulations on your test results!🥳

there may be an incredibly small number of leukemia cells present somewhere in your body, but the test can't pick these up.
They will keep you on your chemo. But this is good. 👍 another milestone achieved. Happy birthday 🥳

Hi Bill when I went undetectable my oncologist took me off sprycel that was 4 years ago and I am still undetectable I started taking sprycel in 2006 so you have hit a great milestone congratulations

BillMatuche, Boy everyone is definitely unique. Sprycel did a number on my legs. My Doctor wanted me to go off sooner, I just wouldn't until my muscles in my legs started to be affected. Stiff, swollen joints and stiff legs. It had to happen. That was last year, went off Sprycel in April and I am just now starting to feel like myself. I've had CML for 6 years, 5 of them I was on Sprycel. I had dosage reduction prior to going off, but I needed to be off. Sprycel put me into complete undetectability in about 8 months and I stayed there without ever backtracking. I just had a bone density scan, I definitely have bone loss. Not sure if it is from my medicine or lifestyle as I have not been able to do things I used to. I hope to get that sorted out too. Hugs to all. jmb