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Looking for people who have cancer with ROS1 mutation
Lung Cancer | Last Active: 2 days ago | Replies (7)Comment receiving replies
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
Replies to "Hello mpennahera, I was diagnosed in September 2022 with the Ros1 mutation. I spent 4 months..."
@hlolson Hello Heidi, I just started Rozlytrek a couple of weeks ago and I’m really struggling with the side effects. I was specifically concerned about the impact on speech, coordination and balance. My insurance won’t cover the drug because even though I have a ROS1 mutation, I do not have lung cancer. We went through hell to get the drug and I’m quite disappointed in how poorly I’m tolerating it. I foundtheROS1ders FB page but I’m having a hard time navigating the page and finding the info I wanted. No of anyone that is being treated with a dose reduction of Rozlytrek? I’m not even sure that switching drugs as an option for me. I really wanna give this medication a chance since we went through hell to get it. My oncologist may consider doing a dose reduction, but I don’t know if that would be good enough. I’m out of questions to ask already and a little disappointed and anxious about moving forward with this drug. Been looking to find people that have been taking it, but it’s proving harder than I thought.
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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.