By Leslie LaChance
PROGRESSION! OH NO! In 2018, five months after my original diagnosis of stage 4 ROS1+ metastatic lung cancer, which we were treating with Crizotinib (aka Xalkori) I got disappointing news. My scans showed progression in the lung and lymph nodes. Crizotinib, which had kept my disease stable for a few months, had failed me completely. Not only did I have progression in my lung, the cancer had moved into my brain, where there hadn’t been any cancer before. And there were a lot of little tumors there in my brain -- not just one or two small spots, but something in the double digits. In fact a radiation oncologist told me that I probably needed to have three weeks of whole brain radiation to treat lung cancer metastases that had spread all over my brain in just five short months. He was very kind and meant well. I said thanks, but no thanks. I’d read up on whole brain radiation and concluded it was a treatment of last resort. After only five months on treatment, I wasn’t ready for that.
I was terrified. But more than that, I was determined to find a better option.
At the encouragement of the ROS1 community, I called the clinic of Dr. Alice T. Shaw, an internationally renowned ROS1 and ALK lung cancer expert at Massachusetts General Hospital in Boston. Dr. Shaw had been running clinical trials of targeted therapies that treat lung cancer brain metastasis and also overcome resistance to older treatments, and I wanted to see if I could get in on one of those. To my surprise, I was able to get an appointment with her for the following week! With the help of friends, I gathered and sent all my scans and biopsy materials to Boston and booked a flight from my home in Nashville, Tennessee.
After meeting with Dr. Shaw and her partner Dr. Jessica Lin, we determined that I should enter Dr. Shaw's trial for lorlatinib. The drug had shown some success in overcoming ROS1 crizotinib resistance caused by new mutations, and in treating cancer metastases in the brain. I was able to start the drug the very next day. I had to fly back and forth to Boston once a month for monitoring over the next six months. (I’m deeply grateful to friends and family who helped with travel expenses). Eventually the drug became commercially available for treating ALK+ cancer, and could be prescribed off-label for ROS1. We had to tussle a bit with my insurance, but in the end, they were persuaded and now cover most of the cost.
When I began the drug, I was cautiously hopeful, keeping a few things in mind. 1) The drug is a treatment, not a cure. 2) It works for some people, and not for others. 3) If it works, there is no guarantee how well it will work, or for how long. My mantra at the time was “Each person’s cancer is different. Each person responds differently to treatment.”
Over the years, thankfully, lorlatinib has worked pretty well for me. I’ve had some “breakthrough” progression, which we’ve treated with standard-of-care infusion chemo and radiation. But mostly over the past three-and-a-half years, I’ve been stable on lorlatinib and am grateful to all the people in the ROS1ders FaceBook group who advised me to contact Dr. Shaw.