On Christmas Day 2012 Dan, my husband, and I were standing on top of Mt Kilimanjaro. April 2015 we spent a few days backcountry backpacking in the Grand Canyon, hiking down and back up with 30 lb. packs. By November 2015 I couldn’t go up the stairs without huffing and puffing, and I had a nagging cough. My PCP had put my symptoms (fatigue, headaches, the cough) down to stress as we’d experienced a house fire in August 2015. Guess again. I found myself taking a medical leave from teaching in November 2015. On Sunday, January 3, 2016 Dan took me to a walk-in clinic because I couldn’t breathe well. The FNP saved my life by doing an x-ray. How simple was that.
After a bronchoscopy biopsy and a PET scan in Maine, I self-referred to Brigham and Women’s and Dana-Farber Cancer Institute in Boston. They immediately did radiation as palliative care, trying (unsuccessfully) to reduce the tumor, and a liver biopsy to ascertain that the lung cancer had spread to my liver (and colon). Testing for a gene alteration was done despite initial insurance denial. Dana-Farber Cancer Institute is very adept at patient advocacy. My DFCI doctor was so excited to give me the news that the cancer was ROS1+ and there was a targeted therapy drug to treat it. Hope! She said I’d do well in treatment because I was young and healthy! (I was 58 and dying.:) Something she said that day seared an image in my mind of nasty little ROs1 driving his speedster throughout my body and the TKI choking off the fuel. Dana-Farber is a place of hope, caring, and expertise. While researching ROS1 I found another place of great hope, caring, and expertise – the ROS1der website and FB group. I am so very grateful for this forum.
I began taking crizotinib March 2, 2016. After finding the right combination of anti-nausea meds and a good supplier of Imodium, I tolerated it well. Within a week I was breathing easily. While never NED, everything was greatly reduced and remained stable. By summer I was swimming and exploring with our grandchildren at our camp. My scans were 8 weeks apart.
In March 2017 I began having odd headaches. A brain MRI determined that ROS1 had evaded the hero crizotinib, crashing through the barrier and entered the lining of my brain. (Leptomeningeal carcinomatosis, shouldn’t have researched that one. The statistics available are outdated.) Again DFCI offered hope. I qualified for a clinical trial for lorlatinib, a TKI that does penetrate the blood brain barrier. I stayed on crizotinib until one week before beginning lorlatinib in July 2017. I gave up teaching to make keeping my body strong and healthy my priority. Within weeks the cancer seen in my meninges was reduced by 80%, everything else remains stable. My dosage was reduced early on due to painful neuropathy. I now have a brain MRI, CT scans, labs, and appointment once every 12 weeks, with labs at 6 weeks. Twenty-nine months so far!
My days are filled finding joy in the everyday every day. In May I reached the first goal I set at diagnosis, attending my granddaughter’s college graduation. I recently hiked (slow-walked) a small mountain. I try to tell anyone willing to listen about the prevalence of lung cancer and the importance of testing once diagnosed. I write to local papers, and to local, state, and national officials. My family participates in the Free ME from Lung Cancer annual 5K. I serve on a patient and family advisory board of the Maine Lung Cancer Coalition, and I participate in a phone buddy program, offering hope to others. My blog, polepolebreathe.blog is named as a reminder that slow and steady wins the race. Pole pole means slowly in Swahili. That is how Dan and I followed our guide to the top of Africa one Christmas Day, one step at a time. Always, always have hope.