I’m Janet Freeman-Daily, a cofounder of The ROS1ders. I’m writing this post in response to some of the comments we’ve seen recently in our private Facebook group “ROS1 Positive (ROS1+) Cancer.” Many of our members who have ROS1+ cancers take the targeted therapy crizotinib (Xalkori), a tyrosine kinase inhibitor (TKI). It was approved by the … Continue reading Thinking about a “drug vacation” from crizotinib? Read this first!
Lung Cancer Canada is collecting data to support approval of crizotinib for ROS1+ non-small cell lung cancer in their country. Their deadline for submission is rapidly approaching, and they need more data to strengthen their case. They would like ROS1+ patients who have taking crizotinib to share the following information (no names): Demographic data (e.g., … Continue reading ATTENTION ALL ROS1+ CANCER PATIENTS! Canadian ROS1 patients need our help ASAP!
The ROS1ders received the information below directly from the researcher, and agreed to share it in hopes patients with ROS1+ NSCLC would participate. We receive no compensation of any kind for sharing this information. ————————————- INVITATION TO PARTICIPATE IN RESEARCH STUDY “The Lived-Experience and Needs of Lung Cancer Patients with Driver Mutations” We invite you … Continue reading ROS1+ lung cancer patients: Paid opportunity to share your experience for research
You’ve likely never heard the story of how three young women, who call themselves “ROS1ders” from a rare form of lung cancer they share, may be turning the nation’s 46-year-old war on cancer on its head. The women were diagnosed with a gene mutation called a ROS1 fusion. Read more here
Thanks to Dr. H. Jack West for the shout-out to our ros1cancer.com website and our page Drugs to Treat ROS1+ Cancer! Time to highlight that we are now in an era when pts w/rare cancers are increasingly likely to know more than docs, even very good ones, about their dzs. This @ros1cancer page on Drugs … Continue reading The value of oncogene-focused patient-caregiver groups
To all ROS1+ non-small cell lung cancer (NSCLC) patients in the United Kingdom (UK): Please help advocate for coverage of crizotinib (Xalkori) for ROS1+ NSCLC through the UK’s national health system. The Roy Castle Lung Cancer Foundation is putting together a submission on behalf of ROS1+ patients, and they are looking for patient experience quotes, preferably from the … Continue reading ROS1+ lung cancer patients in United Kingdom: we need your help!