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!
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
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!
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
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
Since I’ve been holding steady on my treatment, I haven’t needed access to a clinical trial yet. However, clinical trials may become essential to my survival, and I’m already concerned about getting into them when I need help the most. I often hear scientists ask, “how can we increase patient participation in clinical trials so … Continue reading The Unnecessary Cruelty of Clinical Trials by: Lisa Goldman