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ROS1ders: A Community of People With My Mutation

by Maggie Jones
1 comment

I’m very fortunate to have multiple known mutations in my cancer including the rare ROS1+ alteration that is so effectively treated with Xalkori.

A few days ago, Brad found an organized community of ROS1+ cancer patients and caregivers at https://ros1cancer.com.  It introduced us to some new treatment options coming down the pipe (when my cancer adjusts to Xalkori and resumes progression, I hope to join a Lorlatinib trial) and research resources.

It’s great to learn that people with ROS1+ NSCLC are usually younger non-smokers (70% have never smoked). Also, despite representing only 1% of NSCLCs, there is a ton of research out there. I’m in great company and you can read some of their stories here: https://www.lungcancerfoundation.org/patients/ros1/patient-stories/.

Especially inspiring to me are the blogs kept by some of these brave folks.  My original plan for this blog was to keep it as simple as possible for just close friends and family. However, after experiencing how helpful it is to hear the stories of others I’m going to be making some improvements over the next few weeks in the hope it will someday help others with my same diagnosis.  It feels good to have a community of people fighting side by side with me.

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1 comment

Julie H November 26, 2018 - 6:12 pm

This site is awesome! I’m so glad you found it.

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