ROS1 People Unite — Power to the Patients!

In my last blog post I mentioned how difficult I find it to live with the uncertainty, knowing that there’s no obvious post-Xalkori treatment available for me, yet. Predictably, I received several messages from others in the lung cancer community try to reassure me that there are options. “Don’t worry, Zykadia is working great for me!” one person said. “Alectinib is awesome,” said another. But here’s the detail many missed: my cancer has the ROS1 driver mutation, not ALK. And while us ROS1ers got very lucky that Xalkori works for us even though it was developed for ALK, many of the follow-on drugs being developed for ALK do not work well for ROS1.

Last week I attended the World Conference on Lung Cancer. While there, I was lucky enough to chat with Dr. Ross Camidge, a thoracic oncologist and one of the world experts on the ALK and ROS1 mutations. Of course, my chief question for Dr. Camidge was, “what are the best options for ROS1 patients who become resistant to Xalkori?” His response was sobering and motivating: sobering because the post-Xalkori options are few; motivating because the ball is in the ROS1 patients’ court to affect change.

The message I got loud and clear was that we cannot wait for the chance that researchers will come to us and magically drop the next treatment in our laps. We must be proactive. Dr. Camidge, as well as Dr. West of Cancer GRACE, both encouraged me and other ROS1ers to band together. ROS1 is a rare mutation, so it’s difficult for researchers to gather a large enough cohort of ROS1 patients to study. But, if we can do that work for them and present a critical mass of ROS1+ patients to researchers, we make it possible for researchers to conduct medically rigorous studies.

To that end, a group of us ROS1ers are seeking out other ROS1ers. We have created a ROS1 group on Facebook*, a ROS1 thread on Smart Patients, and a ROS1 cancer website. The ROS1 mutation can show up in other types of cancer besides just lung cancer, and we encourage non-LC ROS1+ patients to join these groups (much of the future of cancer treatment is shifting toward targeting the specific genetic make-up of the cancer, rather than the point of origin).

If you or anyone you know is ROS1+, please, please, please, come join our groups (ROS1+ caretakers are welcome, too). Just in the last week, we’ve more than doubled the membership in our FB group. We have people from all over the globe. English is a second language for many, but thanks to Google Translate, this is a manageable hurdle. If you are a cancer patient and do not know if your cancer has the ROS1 mutation, stop reading this now, and go call your doctor and demand comprehensive genetic testing. It could completely change your treatment plan and prognosis. I would almost surely be 6ft under by now if I had not learned my cancer’s mutation and acquired the targeted treatment. It is THAT IMPORTANT.

It’s time for ROS1+ patients to unite, advocate for ourselves and hopefully help not only ourselves but future ROS1+ patients. Power to the patients, let’s save some lives!


Quick side note about cancer mutations: People are often confused by the term “genetic mutation” and assume my cancer’s ROS1 mutation is something I inherited. This is not the case. All cancers have genetic mutations. Cancer, by definition, is a genetic disease — meaning it is caused by changes to genes that control the way our cells function, especially how they grow and divide. These changes to the genes – i.e. genetic mutations – can be caused by all sorts of things (e.g. environmental toxins, radiation, UV, chemicals in the products we use, etc.). It gets even more complicated than that. Each person’s cancer is unique (this is why two people with identical diagnoses, receiving identical treatments, may have wildly different responses), and as the cancer grows, it can acquire additional mutations (this is how patients become resistant to treatments that were initially effective). You can read more here.

*The ROS1 Facebook group is a “closed group” to respect some members’ desire for privacy. If you would like to join the ROS1 Facebook group, send a message either to me or Tori Tomalia on Facebook along with a message to explain you have ROS1 and we will gladly add you.