Listen for Zebras: A ROS1 Lung Cancer Story

There's an old saying in medicine, "When you hear hoof beats, think horses, not zebras." The logic behind the adage is that the common answer is usually the correct one. This is all well and good for the horses, but us zebras can sometimes get lost in the shuffle.

I have ROS1 lung cancer, meaning that my cancer is driven by a mutation in the ROS1 gene. There is an explosion of research currently underway, examining the genetic causes of cancer. ROS1 is rare, accounting for only about 1 to 2 percent of all lung cancers. In fact, it wasn’t until March of 2016 that a drug was FDA approved specifically for ROS1-positive lung cancer. Xalkori (crizotinib) is the drug that has been saving my life for over two years.

I went to a conference two years ago that focused on acquired resistance to targeted medicines. The afternoon sessions broke out by mutation type: EGFR, ALK and ROS1. Us zebras were tickled pink to see eight people with ROS1, since none of us had ever met another one before. "We better take a picture, I don't think there have ever been this many ROS1-ers in the same room!"

Since then, I have been on a quest to track down others with this rare mutation. Along the way, I met up with several others who were equally driven to form a connection and gather us zebras into a dazzle (really — that's the term for a group of zebras). It started as an informal series of text messages where we kept tacking on more people. At some point, one of us said it might be less unwieldy if we just formed a Facebook group. And so we did. This group has become a place for us to share our treatment journeys, discuss clinical trials, exchange advice on symptom management and pool our knowledge. As the months went on, and we told our doctors about the group, we realized what a wealth of information we had amassed.

It was then that the wheels started turning. There is a ton of exciting research happening in cancer these days, but being such a small group had us concerned that we would get overlooked. We are a rare breed, so zebras have to stick together.

Someone in the group suggested approaching the Bonnie J. Addario Lung Cancer Foundation asking if they would create a study just for us. It was a long shot, but we are a group of people with advanced cancer, so what did we have to lose by asking?

When you are in a situation like this, facing an absolutely terrifying and dire diagnosis and prognosis, it is very nice when someone is willing to listen to your concerns. It is even more heartening when they offer to help you. It is a lovely surprise when they take steps to support you. But it is exceedingly rare and wonderful when they actually put muscle and money behind a plan to help you reach your goals.

That is exactly what Bonnie J. Addario and her foundation did.

Over the past few months, a subset of our ROS1 group (which now numbers over 100 people from around the globe) have been participating in conference calls with the foundation to create connections with researchers, health care providers and other stakeholders to investigate this mutation and ultimately create a ROS1 repository that can serve to further research and treatments for our mutation.

You can read more about this incredible, patient-driven initiative on the Lung Cancer Foundation website: http://www.lungcancerfoundation.org/patients/ros1/

If you or someone you know has a ROS1 cancer, please follow this link the answer an online survey about your disease. This is an easy step to further the understanding of ROS1 cancer. http://www.lungcancerfoundation.org/patients/ros1/survey/

I am beyond excited to be part of this initiative, and am empowered to be part of a group of patients who are speaking up and being heard. Having metastatic lung cancer really sucks, but I have met some of the most amazing people because of it.

And really, who can overlook a dazzle of zebras?

Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to CancerLand. Stay tuned for her continued adventures.

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Blog: "A Lil Lytnin' Strikes Lung Cancer" lil-lytnin.blogspot.com