Saturday, October 29, 2016

Fall 2016 Update

     It's been nearly 3 months since my last blog.  I've discovered that, like many things in my life, the longer I take to write a blog post, the harder it is for me to get it done.  I don't like using the "I've been so busy" excuse, but really...I've been so busy.  So I'm trying to catch up...

     In August, Wynn and I made a trip to Denver, CO for the CancerGRACE Lung Cancer Patient Forum for EGFR, ALK, and ROS1 driven disease.  Like other patient education sessions we have attended in the past, we learned so much. The most meaningful information I heard is that there are now 7 new medications that are either in phase I or II clinical trials, or will soon be, that I may be able to try when Xalkori stops working for me. This news, literally, made me teary-eyed.  Since starting on Xalkori over 3 1/2 years ago, there has been no "next drug" for me to access.  I'm on the latest and greatest thing, and I have worried that my cancer will become resistant to it before there is something new to try.  Now I can worry less. 

ROS1-ers unite in Denver
     Although these drugs are, or will be, available through clinical trials, I have to remind myself that they will not be all available to me if, or when, I need them.  Clinical trials occur at specific medical centers and if a patient doesn't live near that center or does not have the resources to travel to that center, then that new drug is not available to them.  I am fortunate that I live near several large medical centers in and around the Chicagoland area, but it may be that the best clinical trial for me is not near my home.  

     The best part about attending patient forums is seeing my lung cancer buddies...and YES!...seeing them trumps the new information I got.  I first met many of these folks in Fall, 2013 at a CancerGRACE forum in Boston.  As I hugged Andy Trahan I said, "I want to cry I am so happy that we are all healthy enough to be here."  Andy's response, "Amen." - with his usual big, warm smile.

     In this group photo, those of us with lung cancer are holding up fingers indicating the number of years we have been thriving with lung cancer, (not just surviving with), since our diagnoses.  NOTE:  In the first row, second from the left is Linnea Olson - who doesn't have enough fingers to show us that she's been thriving for 11 years!  Her son, August, had to help out. 



     After the Patient Forum Wynn and I drove to Rocky Mountain National Park for a few days of R-and-R.  

        We got in two great hikes...

....and definitely want to go back.