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Looking for people who have cancer with ROS1 mutation
Lung Cancer | Last Active: Dec 18, 2025 | Replies (11)Comment receiving replies
Hi, I'm new to the group. I have ros1 lung cancer and have been on Rozlytrek for over 4 years now. The cancer is under control, but due to the side effects, it's been a rough run. The side effects I have are diarrhea, weakness and lack of energy (very frustrating) and mood swings. The cancer center I go to is awesome and has given me all kinds of meds and advice on coping with these side effects. I haven't noticed that these side effects get worse over time, but I still have trouble managing some of them. Has anyone else there have any long-term effects from ros1 or the chemo?
Replies to "Hi, I'm new to the group. I have ros1 lung cancer and have been on Rozlytrek..."
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Welcome @lycisca. The more common side effects listed for Rozlytrek are similar to those for a targeted therapy that I take for ALK+ lung cancer, alectinib. I have taken that one for over 5 years. I agree, I haven't necessarily seen the side effects get worse, but I still struggle with GI issues, fatigue, memory issues, etc.
I'm glad that the medication has been effective for you. These meds are strong and can be life-saving, but they need to allow us to live our lives too.
Did you start Rozlytrek at the time that you were diagnosed? Did you have surgery or a traditional chemo or radiation first?