“All good things must come to an end.” Please join us for our last-ever #LCSM Chat on Thursday December 2, 2021 at 5 pm Pacific. Take time to check in, reminisce & come together as a community one last time.
I’ve been a co-moderator for #LCSM Chat since shortly after it started in 2013. I must admit, it’s hard to see it end. I created its website. I wrote/posted most of its blogs. I worked with guests to create patient-friendly content. I’ve made many friends and connections. But it’s time for this to happen. It just represents a change in priorities–I have more than enough advocacy, writing, and personal projects to keep me busy.
In May 2011—over 10 years ago–I was diagnosed with advanced lung cancer. At that time, chemo and radiation were the only approved first line treatments for advanced or metastatic lung cancer. Despite undergoing chemo and radiation (twice), my cancer spread to my other lung and became metastatic. I was not inspired by the five-year survival rate for metastatic lung cancer patients back then—it was around 2%.
However, in early 2011 a small clinical trial for a targeted therapy pill called crizotinib (trade name Xalkori) had begun for ROS1 positive (ROS1+) lung cancer. This cancer is driven by an acquired alteration in the ROS1 gene. This pill that sounded like an alien seemed to inhibit ROS1+ cancer in about 80% of people in the trial. That was amazingly effective for a cancer drug!
In the fall of 2012, I arranged to have my tumor tissue tested and discovered my cancer was ROS1+. I mentioned the clinical trial option to my oncologist, and he recommended I join the trial (even though it required travel) because the preliminary trial results looked promising. All he could offer me otherwise was a lifetime on a chemo that didn’t make me feel much like living.
I enrolled in the trial in Denver, Colorado—over 1000 away from home—on November 6, 2012, and hoped for the best.
I’m still here thanks to research. Today marks 9 years since I took my first crizotinib pill. I have had No Evidence of Disease (meaning no cancer shows up on any scans) ever since. Although I’m incredibly grateful to be alive and have a relatively normal life with tolerable side effects, I’m always looking over my shoulder. No one can tell me if I’m cured, because few others have been on the drug this long. Most patients find their cancer eventually becomes resistant to crizotinib and their cancer resumes growing. The population of ROS1+ patients is relatively small (only 1-2% of lung cancer patients have ROS1+ cancer), so research on our type of cancer is sparse. We have some clinical trials in process, but no second line targeted therapy has yet been shown effective enough to obtain any government approval.
That’s why Lisa Goldman, Tori Tomalia (may she rest in peace) and I–all people who had ROS1+ lung cancer–decided to do something about it. In the spring of 2015 we created a Facebook group for patients and caregivers dealing with ROS1+ cancer, and eventually formed a nonprofit known as The ROS1ders. Our mission is to improve outcomes for all ROS1+ cancers through community, education, and research. We have almost 800 members spanning 30+ countries, and are considered experts in our disease by some of the top oncologists in the world. We’ve already helped create new models of ROS1 cancer that researchers have used in published research.
We’re now planning a research roundtable in December to explore ways to collect real-world data on ROS1+ cancers, and will be hosting a ROS1 Shark Tank event next spring that will award two $50,000 seed grants for new ROS1 projects. We’re aiming to raise $100,000 this year to fund our work.
Cancer research advocacy is my passion. I’m able to use my skills and time to help make a difference for hundreds of other people living with ROS1+ cancers. It’s a purpose that keeps me going despite the ever-present specter of potential recurrence.
I know there are many worthy charities asking for money this time of year. Any small amount you can give will help accelerate research for hundreds of ROS1ders worldwide who, like me, are dying for more treatment options.