Advocating for ROS1


One of the founders of the ROS1ders, Janet Freeman-Daily, shares her story and why she advocates for molecular testing, clinical trials, and the positive changes she’s seen. “Given that lung cancer patients often don’t have much tumor tissue, we should make the best use of it, and running an NGS test is the best chance … Continue reading Advocating for ROS1

Thinking about a “drug vacation” from crizotinib? Read this first!


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!

ATTENTION ALL ROS1+ CANCER PATIENTS! Canadian ROS1 patients need our help ASAP!


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!

ROS1+ lung cancer patients: Paid opportunity to share your experience for research


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

The ‘Ross-Wonders’, Cancer’s New Superheroes


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

The value of oncogene-focused patient-caregiver groups


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