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Looking for people who have cancer with ROS1 mutation

Lung Cancer | Last Active: Apr 14 7:41am | Replies (5)
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@hlolson

Hello mpennahera,
I was diagnosed in September 2022 with the Ros1 mutation.
I spent 4 months on Entrectinib, but had to many adverse side effects; I am on Crizotinib now and am doing very well.
Everyone reacts differently. I had loss of balance, edema, altered vision and the worst was my kidneys couldn't handle it.
There is a wealth of information on the Ros1ders Facebook page.
There are people there that have survived on TKI's for over 12 years.
I pray and wish you the very best. Heidi

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Replies to "Hello mpennahera, I was diagnosed in September 2022 with the Ros1 mutation. I spent 4 months..."
dedehans | @dedehans | Apr 13 5:25am

I have been on Crizotinib for 9 years and starting to notice side effects. Joints hurt more and more each day and like Heidi I am having balance issues and messed up vision. Just had a blood test and having CT scan on Monday to see if there is any change. Curious as to what side effects not stated in pamphlet are to be expected afer a long period of xalkori use.

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