The ROS1ders: Lung Cancer Patients Turned Precision Medicine Advocates
For Lisa Goldman and Tori Tomalia, Clinical Collaboration is a Matter of Survival
04.28.20 | In this Precision Medicine Podcast episode below, we talk with lung cancer patients Lisa Goldman and Tori Tomalia about the ROS1ders, an organization they created to support those with ROS1-positive cancer—a group that represents just 2% of lung cancer patients.
We were fascinated by how two women with no formal medical background could form such a highly respected and resourceful group for those with this rare type of cancer. The women told us that when they and a mutual friend Janet were diagnosed with ROS1-positive lung cancer, they came together to learn more about precision medicine treatment options by reaching out to one of their doctors with questions.
What they learned is that there wasn’t much information to be found, and, as the doctor said, they would need to bring together a critical mass of ROS1-positive lung cancer patients to enable better cancer models and the needle on research. That’s exactly what these heroic women did.
They leveraged a Facebook group they had started for sharing information to encourage other ROS1-positive lung cancer patients to donate biospecimens and further research. They also encouraged those with ROS1-positive lung cancer to donate excess biospecimens to specific research labs that were helping to build a ROS1-positive cancer model. The goal was for that model to be shared freely with other academic researchers and available for a fee to pharma research. As Lisa said of the effort, “We can't afford to have our biospecimens siloed. There just aren't enough of us. There aren't enough samples that we can have that luxury.”
These courageous women are part of a larger trend of patient advocacy groups that have become a vital resource to accelerate clinical trial awareness and enrollment for patients.
They believe deeply that collaboration is the only way to get the research to move faster and offer better precision medicine options to those with rare cancers.
In addition to sharing insightful tips for those newly diagnosed with cancer, Lisa and Tori inspired us with their tenacity at a time when many would feel like giving up. Tune in to the podcast to hear more about their incredible journey. You can also learn more about their life-changing organization at https://ros1cancer.com/
Download the full transcript of the episode here (pdf).
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About Our Guests
President and Co-founder of the ROS1ders
Lisa was diagnosed with Stage IV NSCLC in January 2014, at age 41. She received chemotherapy until she became resistant after eight months, and then she switched to the targeted therapy crizotinib, which she’s been doing well on since September 2014. Very soon after diagnosis, Lisa began blogging at Every Breath I Take, connecting with other ROS1+ patients online, and advocating for more research into ROS1+ cancer. She is one of the founders and the President of The ROS1ders, Inc., a non-profit corporation representing the largest collection of ROS1 patients in the world. When not doing advocacy work, Lisa enjoys spending time with her husband, two kids, and their crazy cat.
Co-founder of the ROS1ders
Tori was diagnosed with stage IV NSCLC in May of 2013 at age 37. Her cancer had spread into both lungs throughout the bones and into her liver. After six rounds of chemotherapy, she discovered that her cancer has an ROS1+ driver and started on crizotinib. For the next 4 years, crizotinib was her trusty companion, protecting her body wonderfully, but not working so well in the brain. Over those four years, she had stereotactic radiotherapy three times, targeting small brain metastases. When she had a 4th occurrence in the brain, she moved into a clinical train for entrectinib. Entrectinib held things steady for almost a year, but a slowly growing brain met prompted brain surgery in October 2018. In 2019, she started on a clinical trial for repotrectinib, the newest ROS1 targeted therapy. She is still in that trial today. Throughout her cancer experience, Tori has been an active player in her treatment plan, advocating for and researching treatment options for herself and others with ROS1-driven cancer. She blogs at A Lil Lytnin’ Strikes Lung Cancer.