Below is a short video of my oncologist with Bonnie Addario, both heroes. He is the head of Thoracic Cancer at Dana-Farber Cancer Institute. She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation. “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ” The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)
Funny thing thinking about phone calls and this journey. It was that phone call on my cell phone in a restaurant that first caused alarm. Thursday (8/24/17) afternoon, sitting in traffic on 95 north of Boston, we were waiting for a phone call. Usually my MRI and scans have been read by the oncology radiologists and seen by the oncologist before my appointment last thing in the day on my TEST DAY (MRI, Scans, BloodWork). This time, the first TEST DAY since being in the clinical trial and on Lorlatinib, the oncology radiologist wanted the neurology radiologist to look at my MRI before making a firm statement. Everything in the rest of the body was the same (radiation scarring, but not tumor showing in the chest, and same tumors, but no bigger on the liver), and the radiologist and the Dr. said the brain meninges changes are so subtle that all they could say is that there wasn’t any worsening – good news. I am glad they were doing this, just anxious to leave without REALLY knowing.
So, here we were, headed home, with the news that MAYBE the med was working. Luckily for us, the research nurse understood that we really needed to know, and she said she would call us as soon as the neurology radiologist read the MRI. She did! Sitting in four lanes of stopped traffic, chatting about all the cars with just the driver and how many people were texting while driving, my phone rings through the car system, True to her word, as soon as she heard she called, and the news was not to be dreaded, but hopeful. A partial response to the drug after six weeks, 40% reduction in the “enhancement”. Time to cry in relief, and then move on.