Looking for people who have cancer with ROS1 mutation

Hello @mpenaherrera, I have a different mutation, ALK. These targeted therapies can be game-changers in treatment but certainly come with their own lists of side effects. Have you been diagnosed with ROS1? Have you started taking Rozlytrek (entrectinib)? How are you doing?

I believe @hlolson and @velmaforever have both taken Rozlytrek.

I don’t know if you were on Facebook, but there is a very good ROS1 group there with lots of good information and other people who can offer their experiences. I am in it because my husband is ROS1. It has been very useful. He is stage two so he does not get TKI at this time.

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

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.

@mpenaherrera, there is a wealth of information on the ROS1 mutation. In addition to the Facebook "ros1ders" group, they also have their website: https://www.theros1ders.org/. That group was founded by Janet Freeman-Daily, who was one of the first people diagnosed with that mutation. She is also the head of the IASLC's (International Association for the Study of Lung Cancer) STARS (Supportive Training for Advocates on Research and Science) PRA (Patient Research Advocates) program. These medical people sure love their acronyms!

I'm a member of the PRA program and have met Janet many times. If you Google her name, you'll see that there are many ways to contact her with any questions you may have. I have always found her to be very outgoing and helpful. She was first diagnosed in 2011.

Beyond that, you can join the IASLC at iasclc.org as a lung cancer survivor. There is no charge. Once you are a member, you can go to the Lung Cancer 360 section, click on the Targeted Therapies of Lung Cancer link under "Conferences," see replays of the presentations, and download the presentation slides. You can't have too much information!

Rozlytrek is a targeted therapy kinase inhibitor like Tagrisso for the EGFR Exons 19 and 21 mutations. As such, it won't have any of the chemo side effects.

Best of luck with your treatments!