Updated: Feb 15
The ROS1 community has been meeting on Facebook to share stories and support for almost 4 years. I joined the Facebook community in early 2016, just as I started my treatment on Xalkori. Like all patients, I was anxious to know more about how others were doing. How long were ROS1 patients staying on Xalkori? What other medications were being prescribed? How long were other medications lasting?
After 36 years as a math teacher, I seek comfort in data. So I started a spread sheet. First, I looked back at the information provided by new Facebook members when they joined the community. Then, as members posted news about their treatment changes, I continued to update the spread sheet.
I certainly can’t claim that my spreadsheet’s “data” is 100% accurate. Many in our Facebook community do not report updates and some may have stopped using Facebook altogether.
Still, it summarizes what we know about those of us who have been willing to share. So I wanted to share some of this information with you.
As of this writing, there are over 300 patients from 28 different countries represented in our Facebook group. Below is a breakdown of their current treatment, according to my spreadsheet.
I maintain this spreadsheet to help us share information within the group. I will not share your information outside the group unless I have your written permission to do so.
Where do ROS1ders live?
We’re proud that the ROS1ders have created connections around the globe. If our records are correct, 28 countries are represented.
Jersey Channel Islands 1
New Zealand 2
South Africa 3