In February, 39 ROS1 positive patients and caregivers from Germany and the Netherlands attended the 5th annual ROS1 meeting in Cologne, Germany. ROS1ders from across the region have been meeting since 2015, exchanging experiences and staying up-to-date on research activities and treatment options.
Most of this group were diagnosed at the cancer center of the Cologne University hospital, and several have been treated in the EUCROSS clinical trial. At our February gathering, four ROS1 experts, including medical oncologist Professor Wolf and pathologist Professor Büttner, joined us for an informative and lively discussion. Topics included available drugs and their safety, the increased risk of blood clots in ROS1-driven cancers, the usefulness of liquid biopsies, and the limited prospects of immunotherapy combinations.
In Europe, Crizotinib is the only targeted drug approved for ROS1. A few other drugs, such as Certinib and Cabozantinib, are sometimes prescribed off-label and are usually refunded in the German health care system. The approval of Lorlatinib for ALK+ NSCLC is expected soon. Entrectinib is only available in clinical trials, and Repotrectinib (i.e., TPX 0005) is not yet available.
A special cooperation has developed between German ROS1ders and the Cologne lung cancer group. Patients often receive helpful advice from Cologne’s experts no matter where they are treated. This support is especially valuable when resistance occurs and when patients need access to new therapies. A research group focusing on ROS1 translocations has been created within the “Network Genomic Medicine”, an established model of implementing personalized lung cancer care into broad clinical routine in Germany, based on a large high-tech molecular diagnostics platform. The target is to better understand how Ros1 cancer begins, progresses and develops resistance to treatment. This research group currently conducts a special re-biopsy project with detailed genomic sequencing in collaboration with international partners and ROS1 patients. The goal? To understand and treat resistance mechanisms in ROS1+ NSCLC. Patients initiated this project through successful fundraising. It benefits both researchers and patients.