Tuesday, September 9, 2014

A Day with Lung Cancer Experts

      Back in June, lung cancer patient advocate extraordinaire, CraiginPA (his online handle), let me know about a lung cancer education conference for patients in Boston on September 6th. The focus of the conference..."acquired resistance,"  a subject near and dear to my heart lungs. ("Acquired [drug] resistance" occurs when a chemotherapy no longer works to control cancer growth, after it has worked for a while.)  With my oral chemo, Xalkori, there seems to be some variability in how well it works, how long it works and which side effects users experience.  However, the common fact for all patients on Xalkori is that it won't work forever. Some patients see benefits from it for only a few months while others have been successfully treated with it for a few years.  Why Xalkori works longer for some patients and not for others is unknown.  We know, from clinical trials, that when Xalkori is stopped, the cancer tends to come back quickly...aka a "cancer flare." 

     Knowing that one day Xalkori will stop working and that my cancer may grow back quickly has always frightened me.  Having the opportunity to learn what my options will be when that day comes seemed like something I couldn't pass up.  So, this past weekend Wynn and I traveled to Boston to attend the Cancer GRACE's Acquired Resistance Patient Forum for patients with lung cancer due to EGFR, ALK and ROS1 mutations.  


     For as much as I was looking forward to this conference, the night before I wasn't able to fall asleep.  I was awake worrying that I would sit through a day of lectures and at the end I would be told that there is nothing for me.  That's not what happened... 

ROS1 mutation attendees
     It was an amazing day.  There were about 100 registrants, eight of us with ROS1 mutations.  The speakers were the Who's Who among clinical researchers in the field of lung cancer caused by EFGR, ALK and ROS1 mutations.  I pinched myself as I listened to these lung cancer ROCK STARS.  They told us how acquired resistance happens, what we should do when we experience drug resistance, and how best to transition to a new medication. We learned about the new medications that are now FDA approved and available for us to use next, and about new medications that are expected to be FDA approved in the next couple of months.   They even had a speaker from the FDA who explained to us how medications get approved, how they become "fast tracked" and thus available prior to the completion of a clinical trial because trial participants are doing so well, and why some medications don't come to market because they are found to be unsafe.  (Think thalidomide.)  It's good for cancer patients, who may become desperate for a new medication, to have some understanding of the difficult job the FDA has.  After lunch, we were divided into smaller groups, by mutation, and we met with the experts doing research in those areas.  They told us about their work, clinical trials that are available or coming up soon, and we had the opportunity to ask questions.   

     Here are a couple of things I learned that I'd like to share with other Lung Cancer Ninjas:

1)  The Bonnie Addario Lung Cancer Foundation has partnered with the Norris Comprehensive Cancer Center at USC to study lung cancer in young individuals.  If you were diagnosed at <40 years, please consider participating.
Check out:

2)  The next Cancer GRACE Patient Forum will be in Chicago on October 26, 2014.  The focus will be Immunotherapy for the treatment of melanoma, lung and kidney cancers.  Check out:


      There's one last thing I need to mention.  I met many incredible lung cancer patients, and those that love them:  Tori, Beth, Craig, Carole, Andy, Kris, Nicole, Maria, Bernard.  Their cancer stories were heart-breaking.  Everyone I met, like me, is a non- or never-smoker.  Some of the people I met were diagnosed in their 20's and 30's...one at age 18 years, a freshman in college.  Sh*t....I thought I was young.  The single risk factor we all share?...we have lungs.  I learned that if you have lungs, you can get lung cancer. 


Anonymous said...

Wow wee, Luna, what great information you received. It must be so exciting to have options for in the future. I am really surprised that the people you met were non smokers. I really thought you were in the vast minority of people who was diagnosed so young and was a non smoker. I miss you and think of you so often my good friend. I am passing out the information that you listed to other people with your disease. I pray it helps others. How exciting that the drug could last for YEARS with you!!! I am so hopeful and encouraged. Kathy in O

Luna O. said...

Thx, Kathy! Please tell everyone you know about the new therapies in lung cancer and also that most people with lung cancer are non- or never smokers. We think lung cancer research is so under funded is because of the stigma that we are all current or former smokers. Donors don't choose to donate to lung cancer research because they think we "we did it to ourselves."