Wednesday, September 30, 2015

My Lung Cancer Community

     In the past, you've heard me blabbing about how grateful I am for cancer researchers who, not only discovered the ROS1 tumor mutation that is causing my cancer, but who also found a drug, a pill, that manages to work around the mutation allowing the gene to function properly. Thus my tumors shrank and have remained stable for over 30 months.  

     I recently realized that I've barely mentioned my LC community.  This group is made up of other lung cancer patients, the people that love us, and in some cases, our doctors.  I'm connected to them through the internet by way of several online resources:,, and  Additionally, I'm Facebook friends with many, and am in a couple FaceBook groups.  One of my FaceBook groups is 'closed', open to only ROS1 mutation patients and our caregivers.  I've met some of my friends in person at lung cancer meetings, but most I have not met yet.  Although most members of our ROS1 group live in the U.S., we have international members who let us know about their treatment options in their home countries. 

     As in any social group, there are leaders that rise to the top.  This is no different for my lung cancer community.  Our leaders are amazing advocates for us.  They are smart, articulate, well-read, well-written, organized, organizers, and have networked with clinicians, researchers, educational organizations, and fund raising organizations. Tori, Janet, Lisa, Craig, Lysa, and Stuart are a few ROS1-ers that contribute a bunch.  


     I am grateful for my LC community.  It is through this group I have been educated, enlightened, and supported.  Most members let us know when there are changes in their health statuses and share the information they gather from their doctors. I've learned so much from those who are walking my journey...a few paces ahead of me.   


     This week, an LC community leader and my friend, Tori, learned that she has three small tumors in her brain.  She bravely blogged about this:  


     Tori was diagnosed after me and, like me, has been doing wonderfully on Xalkori.  Her brain mets were found on a routine MRI and thankfully, she is asymptomatic.  Although there is a good option for treating the brain mets, and for overall treatment as she moves forward, her news hit me like a ton of bricks. It felt as if I was slugged in the chest.  She is young and has three young children.  She is needed by her family, let alone by our LC community. I will be sending Tori all the good karma I can spare.  Maybe you, too, can send some extra her way? 


Ryan35 said...

Temodar is used with radiation therapy to treat brain tumor in adults.

cowgirlwyo said...

I too am ROS1. I believe we are a large enough population that treatments will be developed for us if we speak up!

general manager said...

Good article shared,.
heart doctor anniston