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!

Keep Reading Please! – A blog post by Corinne


Read about Corinne’s journey living with ROS1 positive lung cancer. “I didn’t realize it, but I was rapidly declining, dying, in late January 2016.” ” Were you WOWed reading that, knowing that I’m still here and functioning well three years after that? I was pretty darned impressed with what medical research has made possible.”

Learning and the Passage of Time – A blog post by Marisa


Marisa was diagnosed with Stage IV Adenocarcinoma in October 2015 at the age of 30. Read her inspiring post about completing grad school while living with lung cancer. “On January 12th, I submitted my final assessment for grad school. Four-hundred-and-sixty-eight days following my first footsteps into the Poli Sci department at UCL. I will never … Continue reading Learning and the Passage of Time – A blog post by Marisa

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

Tumor markers can help monitor ROS1, ALK, EGFR, and KRAS lung cancer patients


Tumor markers (certain molecules in the blood of cancer patients) can provide a useful “early warning” for cancer progression in patients whose lung cancer has alterations in ROS1, ALK, EGFR and KRAS genes. An analysis of data from 142 patients reviewed four tumor markers (CEA, CA125, CA19.9 and CA27.29) and found at least one tumor … Continue reading Tumor markers can help monitor ROS1, ALK, EGFR, and KRAS lung cancer patients