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!

NCCN Guidelines recommend lorlatinib for second-line ROS1+ NSCLC


The new National Comprehensive Cancer Network (NCCN) Guidelines for non-small cell lung cancer (NSCLC) added lorlatinib as a ROS1 treatment option, after progression on crizotinib or ceritinib. This means most insurance should start covering lorlatinib for ROS1. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Non-Small Cell Lung Cancer (Version 2.2019) (subscription required, but … Continue reading NCCN Guidelines recommend lorlatinib for second-line ROS1+ NSCLC

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!

Presentations on ROS1+ Cancer at IASLC #WCLC2018


Members of The ROS1ders will be attending The International Association for the Study of Lung Cancer’s (IASLC) annual World Conference on Lung Cancer (WCLC) in Toronto, Canada, September 23-26, 2018.  The Twitter hashtag for the conference is #WCLC2018. Presentations that will mention ROS1+ cancer are listed below.  The abstract book containing these and other WCLC … Continue reading Presentations on ROS1+ Cancer at IASLC #WCLC2018

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