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!

@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.

@princessmaza
I am so sorry to hear about your current struggles, but I totally understand, except the part of not having lung cancer. Rozlitrek was also hell on me as well. I have learned though from other Ros1ders that they have either reduced their dose to 400mg or taken a break and restarted. Some have said they just stuck it out and it got better after a few months. I did not have that option; it was just to hard on my kidneys. It sounds as though you need to consult or get a second opinion from an Oncologist who is very familiar with the Ros 1 mutation. Please keep me posted.