Lysa was working as an X-ray technician, which required her to often lift or carry patients and equipment, when she developed horrible chronic back pain. She thought she had just pulled a muscle, but after four months of shooting pain she was forced to go to the ER. “I could barely stand up, so they admitted me and started doing tests,” she said. It was quickly discovered that Lysa had stage IV lung cancer that had spread to her bones and caused tumors to grow on her spine, which was causing the pain.
Though she was shocked, there was no time to waste, and Lysa began treatment immediately. She had emergency surgery on her spine to remove the tumors, in hopes of preventing paralysis. Once she had healed, she underwent radiation and chemotherapy treatments. “I was on chemo for about a year and a half when I started to have disease progression again,” Lysa explained. After a needle biopsy came back inconclusive, Lysa decided she wanted to try alternative therapy instead of completing another difficult round of chemo. “I had done a lot of research at this point, so I decided to bring up biomarkers to my doctor and insisted we test for them,” she said. A lung biopsy would confirm that Lysa had ROS1-positive cancer. Though this cancer was extremely rare, it meant that Lysa qualified for targeted therapy. For 10 years, the targeted therapy helped Lysa return to her life and keep the cancer progression at bay.
Finding Community Online
After her original diagnosis, Lysa joined online support groups to talk about everything she was going through with other cancer patients. Her current group, which consists of all people with the ROS1-positive mutation, was where she first discussed clinical trials. “We created the “ROS1ders” for patients with this rare lung cancer, now we have over 1400 patients in 30 countries who participate in discussions,” Lysa said. “These types of groups are so important because not everyone can see an expert, so we are able to share information. We have also created a scientific advisory board that finds available clinical trials.”
Unfortunately, Lysa’s cancer began to progress again and so she consulted her group about alternative treatment methods. They helped her identify a clinical trial so that she could start her new treatment as soon as possible. Taking things into her own hands, Lysa got a lung biopsy and told her oncologist she was interested in the clinical trial. He had little knowledge of the trial, but Lysa felt strongly so she enrolled herself. To qualify, Lysa traveled to Tennessee, where the study was being conducted, to undergo a number of preliminary tests. She also met the staff, and the trial specifics were explained to her. “It was kind of nerve wracking, especially when you’re waiting to hear if you are approved. But once I found out I was accepted, and I just had to wait for a spot, I was so relieved,” she said.
Clinical Trials Can Be a Game-Changing Treatment
For the past two years Lysa has taken oral targeted therapy pills as part of the clinical trial. “It is amazing, I’ve been living with lung cancer for 14 years and had so many different types of treatments. This is the simplest and for the first time, I feel normal again,” she said.
Her clinical trial treatment regimen has caused very few side effects for Lysa. About 12 other people in her discussion group are also participating in the study, so they can support each other through the experience. “To me, [clinical trials] are like getting tomorrow’s medication today. These trials are closely monitored, I have found it to be even better than regular treatment because at the beginning I saw my doctor every week, and we did blood work and discussed any symptoms and side-effects. They are hyper-focused on your health,” Lysa said.
“To me, [clinical trials] are like getting tomorrow’s medication today." - Lysa
“I highly encourage anybody who is given the opportunity to join a clinical trial to do it. Don’t be afraid. You’re getting cutting edge treatment that could save your life, and you are contributing to science that can hopefully save others as well.”
Clinical trials are vital to safely make new advancements in medicine. Find out if one is right for you.
Blog last updated: September 12, 2025
