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: CancerGRACE.org, Inspire.com, and SmartPatients.com.  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:   

http://lil-lytnin.blogspot.com/2015/09/the-other-shoe.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+ALilLytninAroundTheWorld+%28A+Lil+Lytnin%27+Strikes+Lung+Cancer%29  

 

     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? 

CT Scans #10-Update, and more...

     Since the beginning, and for about two years, I had my blood drawn every month to check the level of my tumor markers.  Tumor markers  give me an indirect indication about the activity of my tumors...low levels indicate low or no growth, while elevated and/or rising values raise the concern that my tumors are growing. Additionally, every three months, I had CT scans to visualize my tumors and assess if they were growing, shrinking, or staying the same, (aka "being stable".)  

     I've always been bothered by having too many CT scans.  Certainly, it has been reassuring to know that each time I've had scans, so far, I've been told that my tumors are either shrinking, or are stable.  However, CT scans expose me to radiation, and although I've read that the increased risk of radiation induced fatal cancer is low, I never want to increase MY risk for more cancer...I already have plenty. Last year I negotiated with my oncologist and we settled on CT scans every 4 months.  Reducing my radiation exposure by 25% felt good, and do-able, as long as my tumor markers remained low.  

      Then, last April I went to see one of the leading researchers in ROS1 mutation driven lung cancer, Ross Camidge, MD, PhD in Denver, CO.  Dr. Camidge has been studying the value of tracking tumor markers and told me that he is comfortable having my blood drawn every 2-3 months and if the markers are within normal limits, having CT scans every 6 months.  THIS was exactly what I wanted to hear...or so I thought.

      Having CT scans less frequently has it's pros and, at least, one con:

PROS:  

1. Of course, 50% less radiation exposure.
2. I found that, between the tests, I thought about cancer a little less.  Along with keeping fewer appointments, I also didn't have to juggle other things in my life (work, caring for my elderly mother, and having fun,) to schedule my appointments around. 
3. Fewer tests means fewer insurance pre-authorization hassles and fewer bills.  
4. I also discovered that I needed to call on an inner strength that would allow me to tolerate a longer time between tests.  I convinced myself that if I could wait an additional 3 months before a CT scan, I would be proving to myself that I was confident in my medicine's ability to keep my cancer at bay.  (This was a "head-game" that's part of the mind-body-spirit B/S that I occasionally blog about.  To be honest, I floated this point between the 'pro' list and 'con' list and decided it probably a 'pro'.)

CON:  

1. Every once in a while, I'd have a bad day and was certain my cancer was growing again. I'd count on my fingers how many months away my next CT scans would be.  I wondered if I shouldn't call my oncologist and tell him that I was wrong...that I prefer more radiation.  I found myself saying  that old adage, "Be careful what you wish for, Lu."

     Well...I was able to stick it out.  I had CT scans last Friday, 6 months after my previous scans.  I was right to wait.  My tumors continue to be stable and there doesn't appear to be any new tumors.  WAHOO!  

     [BTW...I think I overlooked mentioning that last July I had a brain MRI was normal, meaning that I don't have metastatic disease to my brain.  DOUBLE WAHOO! WAHOO!  This is particularly good because Xalkori doesn't cross the blood brain barrier, so it doesn't protect it.]

     Here are a few photos from the end of summer:

White Sox game with Tom and Terri!

Chicago Skyline from inside the Chicago Art Institute

Showing visitors Chicago is always a pleasure.  It's fun and beautiful.

At 'The Bean" with life-long friend, Stacy.

Cirque du Soleil, Kurios - a great show with great friends, Jerry, Stacy, Brigid

Outdoor art in Chicago is amazing.  The Picasso is only one of many.