Understanding the Plan

     One of the more difficult aspects about being a stage 4 lung cancer patient that is "doing well," is knowing that my medicine won't work forever.  The average Xalkori patient sees benefits for about 8 months and I've already surpassed that by nearly two times.  I hope to be an "outlier" who will benefit from Xalkori for years, but in the meantime, the thought that my medicine can stop working at anytime weighs heavily on my mind.  

     Last week I attended a lecture at The Wellness Place near my home.  The speaker, Melissa Johnson, MD, is a thoracic oncologist from Northwestern University Medical Center.  She was an excellent lecturer and her talk turned out to be a great launching point for me to gather more information so I can figure out a plan for when Xalkori stops working.  Several ill-defined questions I've been perseverating over, started to take shape. 


     Earlier accounts of the oral chemotherapies commonly used to treat lung cancer indicated that when they stop working, the cancer "rages back."  The word "rages" makes me feel like the cancer will come back so quickly that I won't have a chance to figure out a strategy to re-group and fight back.  It frightens me.  After hearing Dr. Johnson speak I decided I needed to come up with a plan and started reading more, asking questions, meeting with doctors, and contacting clinical researchers.  Here's what I've learned:

     Over the past couple of years, or so, clinical researchers have learned so much from their patients.  They now transition patients from one medication to another much differently. It appears that when a targeted oral chemotherapy stops working, it doesn't stop working in all the cancer cells...just some of them.  So, although the medication doesn't control all the cancer cells any more, it still controls some or most of them...at least for a while.  Patients with recurrent lung cancer growth are kept on their medications, which slows the cancer growth down while the next best treatment option is decided upon. 

     Anti-cancer medications stop working because the DNA in the tumors mutate and become resistant to the chemo.  To know which treatment option is the best after a targeted oral chemotherapy stops working requires a tumor biopsy and re-testing for tumor mutations.  Then one hopes that the new tumor mutation has a treatment option available.  Here's where it gets tricky for some of us...

     Right now the most accessible tumors for biopsy are the metastatic tumors in my liver.  Xalkori has been working so well, that all the tumors have shrunk.  If, down the road, tumor markers in my blood and CT scans indicate that my cancer is actively growing again, ideally I'd like to have a biopsy and tumor genetics done so my next medication can be started, immediately.  Not so fast...  

      Tumor genetic testing requires an ample sized tumor sample to identify, and then confirm, any new mutations.  My tumors are all very small right now and some are not visible on CT scan.  I learned that once blood testing and imaging tell me that the cancer is growing again, I will, in all likelihood, have to wait for the tumors in my liver to grow big enough so that an adequate biopsy can be obtained for accurate testing to be possible.  I may need to wait for months.

     I asked the lecturer and my oncologist how patients feel while waiting for the tumors to grow large enough to test.  I am told that we usually feel OK, physically.  However, I understand that emotionally and psychologically, it's tough, as you can imagine.  My oncologist reminded me that cancer growth is a process that occurs over time, and although we will never know how long I had cancer before it was discovered, it was probably a while.  He, kindly, reassured me that nothing bad will happen suddenly.  I needed to hear that and remind myself to: