In December 2017, John developed what he thought might be the flu. It was diagnosed as an upper respiratory infection and was prescribed an antibiotic. After several weeks, the symptoms didn’t go away and he went back to the doctor’s office. The second diagnosis was bronchitis and was prescribed prednisone. The illness never went away. January 2018, he flew a helicopter 4 hours from Madison, WI to Louisville, KY. The drive back to Madison was 8 hours. He coughed on and off the entire drive back home. The next day, he went back to the doctors and they decided to take an x-ray. The x-ray showed he had a mass in his right lung. As a note, 9 months earlier he had a normal chest x-ray.
The end of January 2018, the Mayo Clinic in Rochester MN, performed a complete work up including PET Scans, CT Scans, Brain MRIs, Bone Scans, and blood work. On February 1, 2018 at age 67, John was diagnosed with stage IV non-small cell lung cancer. Several weeks later, the genetic tests came back and the cancer was determined to be driven by the MET 14 skipping alteration.
His initial treatment was a combination of Carboplatin, Alimta and Keytruda every three weeks. John experienced all the normal side effects, including losing 65 pounds, half his hair, hearing loss, neuropathy on the bottom of his feet, no energy and a significant loss of red blood cells. He was given 2 units of blood to get his red blood cells back into range. After 4 treatment sessions, carboplatin was removed for his treatment due to tolerability. After a total of 5 months of mixed results, it was decided to have one additional treatment and look for a clinical trial. After the last treatment, the immunotherapy started to work and the tumors shrunk about one-third.. Now John had to make the decision, whether to stay on the current treatment plan or go on the trial?
John decided to go on the Capmatinib phase 2 clinical trial July 2018. At first the tumors shrank, and then became stable. Targeted therapy returned his quality of life.
When not working on the MET Crusaders, John pilots his helicopter and airplane, boats on Lake Michigan, drives his motorcycles, and participates in local government, but most importantly spends time with family and friends.