On Imatinib 400 mg since July 5th. Had to pause for 2 weeks because of low counts. 1st qPCR was .8% at 10.5 weeks. Very happy with the molecular response, but I generally feel crappy. Have some good days when I feel almost 80% of my old self, but those days are not many. My onc is wonderful, a rare CML specialist, but she says I probably will never feel again my former energy and robust health. Interested to hear from others if things may get better over time or if I just need to suck it up. Thanks.
You are here
Feeling somewhat normal?
Well from another newbie( dx aug 6), the first 6 weeks was the worst. I haven't missed any work but some days I would go in and look at what I needed to do and just stare at it and think" oh, I can't do this". I work in a fast paced,a lot of lifting retail. Chronic fatigue. But it gets better. Learn to rest when needed. For me the worst is mental. I worry about new aches and pains. But I'm working on that. Good luck.
I can relate to this, Rick.
I am 62. I started my imatinib on 21 July. My measurements are within target but are poor compared with yours, my FISH at 12 weeks is 15% and PCR 17%.
My side effects went away after just a few weeks, but measurably I have lost 20% - 25% of my energy. Unfortunately, I have also put on 5 kg in weight. I've managed to continue to work three days a week and haven't lost a day. I think that because of lost energy I have exercised less and therefore suffered weight gain. My haematologist thinks that CML causes weight loss prior to treatment and the weight gain is a sign of recovery to a more normal state.
P.S. I have rather worked out that the lethargy is attributed more to CML than to the TKI.
Rick - Keeping in mind that mine is just one experience, I never had a good day on Gleevec and I took it for two years. I got to the point where I questioned what was the point, if living felt this bad. When I switched to Sprycel, it was night and day. I felt nearly like my old vaguely remembered self. I won't say perfect; there's still some fatigue, some puffiness. But I never again had malaise, nausea, diarrhea, or anything close to the depression and anxiety I had had. On Sprycel I have never had a headache or a rash or any muscle or bone aches, no cramps. As long as you are responding, never forget that you have the option of switching drugs for no other reason than to see if you can feel better. You'll never know if you don't try it. Having said that, many Gleevec people say what you describe does get better with time. I just wasn't willing to give it more than two years!
hi rick i have been on glevec for eighteen years lots of leg cramps my teeth are falling out lose of some energy some bone pain but it beat a dirt nap i still make fire wood twice a week i do a lot of hunting and fishing my wife says i should slow down a little i am 65years old when i started on glevec it wasnt approved my levels are almost normal feel free to ask any questions that you have grampa joe
Thread continued from:
cml drugs