Pulmonary hypertension in ROS1+ patients on TKIs

Two independent studies found ROS1+ lung cancer patients are more likely to develop blood clots than patients who have other lung cancers. Pulmonary embolisms are not uncommon in the ROS1ders, and these types of blood clots can eventually result in pulmonary hypertension (because it increases pressure on the heart). The appearance of a new blood … Continue reading Pulmonary hypertension in ROS1+ patients on TKIs

ROS1derings Winter 2020 (The ROS1ders newsletter)

Welcome to the Winter 2020 issue of ROS1derings, the newsletter of The ROS1ders! This issue contains info about on our patient-driven research, a fundraising update, a summary of current targeted therapies for ROS1+ cancers, and tips on parenting after a ROS1+ cancer diagnosis. Thanks to editors Joyce Hoelting and Jeff Wynne, and contributors Lisa Goldman, … Continue reading ROS1derings Winter 2020 (The ROS1ders newsletter)

Ros1derings : August Edition

The second issue of our newsletter was released just over two weeks ago. For those who have missed it, you can grab it here : Ros1derings : August edition Contents include: A feature about Luna Okada, a 6.5 year ROS1der Some numbers about Xalkori use Fundraising updates Tips for traveling with stage 4 cancer An … Continue reading Ros1derings : August Edition

Entrectinib -Roche’s Gene-Targeting Drug Shows Promise in Child Brain Tumors

“The young boy was running out of time. His brain tumor was growing so fast that he had trouble putting words together. All standard cancer treatments had failed. Then last summer the child started taking an experimental pill that targeted a rare genetic mutation found inside his tumor. Within months, the malignant growth started to … Continue reading Entrectinib -Roche’s Gene-Targeting Drug Shows Promise in Child Brain Tumors

Announcing The ROS1ders newsletter “ROS1derings”

We’ve created a newsletter! This newsletter will become a quarterly communication tool for The ROS1ders. In this issue, Marisa Wittebort shares tips for contributing to the ROS1 tissue study, Bärbel Söhlke​ writes about ROS1 activities in Europe, Jeff Wynne details what his data base shows about ROS1 members, and Lisa Goldman offers a fundraising update. … Continue reading Announcing The ROS1ders newsletter “ROS1derings”

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