About the ROS1ders


This website was created by a group of patients who have ROS1-driven cancers.  The group currently has over 120 patients from over 12 countries–not bad for a rare cancer!  We call ourselves “ROS1ders.”

This site is a place where we can collect and share information about ROS1-driven cancers.  As we add more content, you will be able to find ROS1 clinical trials, journal articles, ways to get tested for ROS1-driven cancers, current treatment options, resources to help you find ROS1 expert oncologists and targeted therapies, hints for coping with side effects of common targeted therapies, and blogs written by patients who have ROS1-driven cancers.

If you or someone you know has a ROS1-driven cancer, please send us a message on our Contact Us page so we can connect.

We have a closed Facebook group titled “ROS1 Positive (ROS1+) Cancer” for ROS1 patients and caregivers. If you would like to join the group, please fill out this form:
https://goo.gl/forms/o4ZU9zFQFyXKX4rm2
If you have any questions about the Facebook group, send a private FB message to administrators Tori Tomalia, Janet Freeman-Daily, or Lisa Goldman.

Smart Patients has a ROS1 Cancer community.  Relevant discussions are tagged “ROS1” to make them easy to find.  Janet Freeman-Daily moderates it.

The Bonnie J. Addario Lung Cancer Foundation has partnered with us to develop research programs for ROS1-driven cancers of all types.  Their ROS1 webpage has a link to research study they created together with us.  If you are a ROS1 patient, or a carer who speaks for a ROS1 patient, please click here to access the ALCF ROS1 survey.

You can download and print fliers to share information about this website, the ROS1 patient group, and our patient-driven research below. We are in the process of translating the flier into other languages:

ROS1 Patient Flyer (English, pdf, 2 pg)

Last updated 2016-12-10

4 thoughts on “About the ROS1ders

  1. Hi, I’m from Belgium, my husband (44 years old, never smoked a cigaret or anything else, ran marathons,…) was diagnosed with lungcancer in october 2014, tested ALK-negative, had 9 ‘regular’ chemo’s (1x cisplatin, 3x carboplatin, 2x mono-alimta, 3x taxotere) which all helped for some weeks but then failed…
    In june 2015 he took a ROS-test and came out positive ! All of a sudden we had a future again with our kids (now 10 and 13 years old), Xalkori-treatment is still succesful, but also has side-effects, mostly in the intestines. If anyone can relate to this and has any leads to ease the pain and discomfort, we would be very greatful !

    Like

    1. I’m so glad you found this site! Please join our Facebook group, where you can meet with other ROS1ers from around the world. We have 50 members so far!
      Tori Tomalia

      Like

  2. 私はROS1患者です。一年まえから日本でザーコリー

    の治験を受けています。

    日本ではザーコリーの後の薬(分子標的薬)は、まだありません

    他の国ではいかがでしょうか?

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s