65_Life Support: One Cancer Survivor’s Journey into Patient Advocacy with John Hallick
John Hallick, founder and president of MET Crusaders and co-president of Biomarker Collaborative, joins the podcast to share the story of his journey into patient advocacy. In February 2018, 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.
After learning from doctors that while there are many support groups for genetic alterations, there was none for his, John took action. He drew from his background as a serial entrepreneur to set up a patient-centric advocacy group for people with his particular genetic alteration.
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John Hallick is a serial entrepreneur of several companies, all based around data warehousing, data mining, and individualized communications management. In December 2017, John developed what he thought might be the flu. It was diagnosed as an upper respiratory infection, and he 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 he was prescribed prednisone. Again, the illness never went away. In January of 2018, he flew a helicopter four hours from Madison, WI, to Louisville, KY. The drive back to Madison was eight hours. He coughed on and off the entire drive back home. The next day, he went back to the doctor, and they decided to take an X-ray. The X-ray showed he had a mass in his right lung. As a note, nine months earlier he had a normal chest X-ray.
At the end of January 2018, the Mayo Clinic in Rochester, MN, performed a complete workup, 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 and 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 two units of blood to get his red blood cells back into range. After four treatment sessions, carboplatin was removed from his treatment due to intolerability. After a total of five months of mixed results, it was decided for him 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 of whether to stay on the current treatment plan or go on the trial. John decided to go on the capmatinib phase 2 clinical trial in July 2018. At first, the tumors shrank and then became stable. Targeted therapy returned his quality of life. Like all TKIs, capmatinib stayed effective for over three-and-a-half years. John trialed a MET antibody with limited success and is back on chemo and immune therapy.