Participating in Studies and Trials

One of the cool things about medical research is that some of it can be patient driven. For example, the ROS1ders (my tribe), are working with the Addario Lung Cancer  Medical Institute and Champions Oncology on a study looking at mechanisms of resistance to treatment among ROS1+ cancer patients like me. In order to learn more about these mechanisms, researchers need a greater number and variety of cell lines to study. The research relies on Patient-Derived Xenografts (PDX). In other words, patients voluntarily submit biopsy samples to these researchers in order to increase the amount of available tissue and data. This study was actually proposed by the ROS1ders in collaboration with researchers, so that's pretty exciting, and that's what we mean by patient-driven. The thing is, not all ROS1+ patients are aware of the study, so they don't necessarily know that, once they become resistant to initial treatment, like Xalkori, they can have another biopsy done and donate some of that tissue to our project. We're currently spreading the word through our ROS1+ Facebook group, and we'd love to get the word out more widely. That's a challenge, because we ROS1ders are sort of the unicorns of lung cancer; only 1-2% of lung cancer patients have this mutation. But, if you happen to be or know a ROS1+ patient, study information can be found here: Motivated Patients with ROS1 Cancer Initiate Global Research Study

Yesterday I heard a piece about cancer research in China on NPR: Doctors in China Lead Race to Treat Cancer by Editing Genes.  The story profiles a researcher and his patient, a man who is receiving an experimental treatment for Stage IV esophageal cancer. Researchers harvested some of the man's T-cells, edited them using a gene-editing tool called CRSPR so that they will fight cancer, and then infused the edited cells back into the patient. This story reminded me about the genetic engineering techniques also being studied here in the states. Research in the U.S. has been showing some promise as well: Car-T Cells: Engineering Patients' Immune Cells to Treat Their Cancers.

I get pretty excited and hopeful when I read about these new therapies, but, right now they are only working in a small percentage of patients receiving them, and even when they work, they don't necessarily keep working. So, these techniques are never referred to as "cures", but are called "treatments", which means that they might not eradicate the disease, but they can keep it in check. So, hope is always tempered by scientific realities.