Thursday, April 30, 2015

My Appointment with Dr. Camidge, and Josh

     Monday, after work, Wynn and I hustled to O'Hare to catch a plane to Denver because the next morning we had an appointment with Ross Camidge, MD, PhD - a lung cancer specialist at the University of Colorado.  This is the appointment I scheduled after I had a tumor marker scare, which I blogged about back in January:

     Dr. Camidge is a medical oncologist, clinical pharmacologist, and researcher with extensive experience in lung cancers that are caused by DNA mutations, such as the kind I have. There are a few clinical researchers in the U.S. that specialize in patients with ROS1 mutations, and I chose to make an appointment with Dr. Camidge because I had read that he had experience with patients who also have cMet mutations.  I have both, (or so I thought), so he seemed like the guy for me. The Anschutz Cancer Pavilion at the University of Colorado Medical Center is a large academic comprehensive cancer center, with some sort of affiliation with the National Cancer Institute.  There are two "famous" ROS1 mutation specialists there, Dr. Camidge and Dr. Robert Doebele. 

     On Tuesday morning, before seeing Dr. Camidge, we met with his fellow, Sinead Noonan, MD.  She spent nearly an hour with us reviewing my history and answering my questions.  She, methodically, responded to all of my questions and in the style I like best, explaining each of her answers in language Wynn and I could understand and digest.   

     Dr. Camidge came in later and spent another 30-40 minutes with us.  He, obviously, is incredibly knowledgeable about ROS1 and cMet and is very skilled at explaining what he knows.  He must be really good at reading facial expressions because when I became lost in his answer to one of my questions, he tried again using an analogy.  (Thanks, Dr. Camidge.)  Here's what I learned:

  1. I probably don't have a cMet mutation, in addition to my ROS1 mutation.  Having two tumor mutations is rare and initial testing results made me, and my local oncologist, think that I had both.  However, more recently, researchers have devised a better and more accurate way of testing for cMet mutations and with the newer method, it looks like I don't have cMet.  I kinda liked the idea of having a cMet mutation because, initially, it was thought that cMet mutation driven cancers responded better to targeted chemotherapies.  The data is still coming in, but it's moot for me.
  2. Per Dr. Camidge, if one is going to have a tumor mutation, ROS1 is the one to have.  As far as mutations go, it's a relatively "simple" DNA alteration that responds to Xalkori better and longer than another similar mutation called ALK.  Additionally, ROS1 driven cancers don't seem to metastasize to the brain as commonly, which is really good since Xalkori doesn't cross the blood-brain barrier, it seems.  
  3. Regarding what to do when Xalkori stops working, he said the following:
    • Still, no one knows how long it will work for me.
    • When it stops working, it won't stop working suddenly in all my suppressed tumors.  It gradually stops working in some cells in different areas and overtime, will stop working in more and more cells.  When that time comes, I'll know because my blood tumor markers will start rising and I will then get scanned more frequently, either by CT or PET, to find the "hot spots."  As long as there are five or fewer hot spots, I can have targeted radiation to "zap" those tumors.  I will do this for as long as possible.  
    • When the time comes that there are more than five hot spots on a scan, that will be the time to start a new medication.
    • Since there is no cure for my disease, the goal is to get as much time from each of my treatment medications as possible, thereby extending my life as long as possible.  
    • Right now there are two medications in Phase I/II clinical trials that are being used by other patients who have ROS1 and acquired resistance to Xalkori.  Hopefully by the time I need them, there will be much more known about these medications so I can try the best option.
  4. I asked him about the frequency of needing CT scans, because I've always felt uneasy about being exposed to such radiation every 3 months.  He and his team have been studying the accuracy of tumor markers in blood with cancer growth and they will soon publish data confirming that when cancer is actively growing, certain tumor markers in blood will rise.  Conversely, when tumor markers are low, cancer cells are not actively growing.  For me, since I've been doing well on Xalkori and ROS1 driven cancers grow relatively slowly, he is comfortable testing for blood tumor markers every 2-3 months and getting CT scans every 6 months.  Certainly, if my tumor markers start to rise, I'll get scanned more frequently. 
  5. The red hot topic in cancer treatment is immunotherapy.  Although great advances have been made in the science of cancer immunotherapies, including in some lung cancers, it's not ready for me yet.  Dr. Camidge, however, was optimistic that it's not too far away.
  6. Dr. Camidge made a few miscellaneous comments that I made note of:
  • Lung cancer patients with ROS1 mutations are rare, therefore, the data about us "dribbles in."  It may take many years to gather needed information and data.
  • He feels reasonably certain that I will have years a head of me, probably not decades, but years.  (That sure beats the matter of months I thought I had in the beginning.)
  • He has several patients with ROS1 mutations, who have been on Xalkori since the beginning of the phase I/II clinical trial, (over 3 years.)
  • If there is ever a time when I should enter into a clinical trial that he recommends, I can always see if there is a trial site at one of the big medical centers in Chicago. 
  • When I asked him how often I should make the trip to see him, he said, "When you need me. You can email me anytime, too."
  • I mentioned that I'm taking a break from my book club because I have no time to read books for pleasure.  I spend nearly all my time reading about cancer.  He looked disappointed and then told us about a great book he's enjoying by Jack Finney called Time and Again.   
      Wynn and I feel this was such an important and valuable meeting.  We learned new information from the researcher himself...and he and Dr. Noonan were so kind.  

      It was a beautiful day in Denver and we were lucky enough to meet our nephew, Josh, for lunch.  A great day all around!  


Tuesday, April 21, 2015

A Quick Knee Update

       It has been four weeks since I was skiing at Solitude in Utah, fell, and injured my right knee.  Getting insurance preauthorization for a brain MRI to check for metastatic disease took a day.  Who knows why, but it took nearly two weeks to secure insurance preauthorization for an MRI of my knee. There's good news and bad news. I always like to give the bad news first...

     I did some real damage.  Per the MRI, I completely tore my medial collateral ligament (MCL), partially tore my anterior cruciate ligament (ACL), have a segond fracture, and contusions on my femur and tibia.  

     The good news:  By the time I saw my orthopedist after the MRI, things had started to calm down and heal.  The swelling and pain had reduced significantly and I was able to bear weight well.  The MCL and segond fracture will heal on their own and I'll probably be able to get by in life with a partially intact ACL.  For now, my orthopedist doesn't think surgery is needed, as long as things continue to move in the right direction...and since I'm not an elite athlete.  He's optimistic that I may be able to rehab myself back to the point of being able to ski again.  I graduated from the crutches by week 3 and next week, will get a smaller brace.  I go to physical therapy twice a week and am slowly on my way to recovery.  

     The key to full recovery?  PATIENCE, PERSISTENCE and CONSISTENCE. I'm pretty sure I can be persistent and consistent, but I'm pretty terrible at being patient.  

(P.S.  Ohhhh...if only I could rehab my way out of stage 4 lung cancer.)