Is there information available on the effects of long-term ros1?

Hi @lycisca, being on these targeted treatments for long periods may have other unexpected effects, but maybe not. With some of the treatments there just isn’t enough research to know for sure. Looking to others is often the best we can do. Sorry that no ROS1’ers have chimed in here.
I’m certainly not an expert. I did have a new nodule show up a couple of years ago, and my team was convinced that it was cancer, as it’s easy to blame the cancer. After a couple of biopsies it was determined to be a fungal nodule, not cancer. This isn’t really answering your ROS1 question, but we do continue to live our lives and have other exposures and aging that can lead to changes in our bodies.
For now, I’m assuming that your oncologist is continuing to monitor you for any changes with these newer findings? Have you seen a pulmonologist?

Hello @lls8000
Thank you so much for your thought-provoking response. I agree that currently there isn't enough research to know for sure. Roslytrek was approved for use shortly before it was prescribed for me almost 5 years ago, and the other drug I'm on, Romvimza (for a tumor in my shoulder) was only FDA approved this year.
My oncologist said she was 95% sure the tumor was ros1, and then the biopsy showed it was something else altogether. Trying to gauge the side effects of two new drugs has got to be frustrating. Some of the side effects I'm having are one drug reinforcing the side effects of the other. Thus far the cancer center I go to has been outstanding in helping me, but I think things may be getting a little ahead of them and I plan to see if I can schedule a virtual appointment with my oncologist or her physician's assistant in January. I live in a remote, rural area 2 hours drive from the cancer center. I haven't seen a pulmonologist because this is the first time the inflammation in my lungs has cropped up as an issue. I'd like the oncologist's opinion on it before I act on my own.
I agree that as we continue to live our lives, our bodies change and it may not all be cancer.

Hi @lycisca, I am a 3+ year survivor with stage 4 Ros+ lung cancer. I am treated and cared for at the City of Hope in Duarte, CA, but I live four hours away in Arizona. I had terrible side effects on the entrectinib, but I have done very well with minimal side effects to crizotinib for 2 1/2 years. Everyone reacts different to TKI's, my team and I are trying to keep me on the same med as long as possible. To answer your question there is a wealth of information about the treatments and side effects. There are over 20 Ros1 specialty oncologists in the world. A very good resource, is a group on Facebook called the Ros1ders, where there is over 1400 members and a lot of information. This I believe will help answer many questions plus give loads of help from people with similar issues. They could also point you in the direction of an oncologist that could help with a second opinion. I hope this helps with what you are asking for.

Hi @hlolson,
Thank you for your response. Yes, the side effects of entrectinib are very rough and they can be different for everyone. I'm glad you're doing well on crizontinib, which would have been the second choice for me, but I've been able to tolerate (sometimes with difficulty) a reduced dose of entrectinib for almost 5 years. I hope that continues. I've already gone the second opinion route with the same response: ros1, Entrectinib, and have the support of a very good Cancer Center and their staff. I wish you good luck with your treatment.