Less than a year after my 50th birthday, it started with a non-productive cough and extreme fatigue. First I spent a few weeks being treated for heartburn then asthma. Neither made sense, but a chest X-ray was ordered when the cough only got worse which showed a suspicious spot on my right lung. Then after a PET scan and biopsy in June, 2019, I was diagnosed with NSCLC stage IIIA initially, with one tumor in the right lung and two in lymph nodes. At this point I was scared, but also very hopeful. I was seeing experts at the University of Michigan and their plan was a cure. Starting with 25 radiation treatments and 5 rounds of chemo (carboplatin and paclitaxel) in 5 weeks, then surgery, then immunotherapy for a year. They had done biomarker testing but I didn't do much research on what that meant.
After the 5 weeks of treatment, with a scan to prepare for the surgery, a 2nd tumor in the right lung was identified. The surgery was still attempted but started with a biopsy which confirmed spreading to a couple lymph nodes on the left side. So no surgery, it was now stage IIIB. The next plan was 15 more radiation treatments in 3 weeks and then a year of immunotherapy (durvalumab/imfinzi). I was still hopeful, they still said curable and I’d have a CT scan every 3 months. After 3 months of immunotherapy, my thyroid stopped working, a common side effect, so I started taking synthroid. After 6 months, the scan showed spots on my bones, they said it could be radiation calcification or bone metastasis. Then the next 3 month scan confirmed bone mets, it was now stage IV, the immunotherapy wasn't working and I was losing hope. But they ordered more biomarker testing using the last biopsy and I heard ROS1 for the first time, 17 mos after my initial diagnosis. I was told this was a good thing because there were drug options. So after 3 months off of immunotherapy and some steroids for side effects, the new plan was to start a TKI. My husband and I then went to the Cleveland Clinic for a 2nd opinion and heard the bone mets may have been there at initial diagnosis but not detected and my prior treatments based on stage III made sense until the bone mets and ROS1 were confirmed.
So my new internet searches found the ROS1ders and I was feeling hopeful again as I started crizotinib in early December 2020, 250 mg 2x a day. Unfortunately, after 9 days I had a severe reaction that resulted in 4 days in the hospital to get my high fever and horrible rash under control, they ran every test imaginable but no cause was identified. They ended up saying it was probably due to the immunotherapy drug that could last up to a year in my system, not really a tested combo I guess. But after a two week break from crizotinib it was reduced to 1x a day which seems to be working. It’s been a little over a year with tolerable side effects and the 3 month CTs and MRIs show no progression.
I remain hopeful but find myself wanting to fill each 3 month span with more travels and new activities (although not easy during a pandemic). In the last 3 years, despite cancer and covid, I’ve taken 17 trips with various family and friends. These adventures include a few car trips to other Michigan cities, a five day drive through the New England states, a week on two Hawaiian islands, and 2 weekend trips with my dad - a Kentucky bourbon trail trip and a NYC trip seeing two Broadway plays.I try to focus on the positives, there really are so many. I have a wonderful support system of family, including my husband, two adult children and two grandsons, plus an amazing group of friends. Some other positives are having a good job at UofM that’s now remote indefinitely but has a great sick time policy and disability plan if needed, there are options if crizotinib stops working, and I can still travel. Of course there are difficult days when my focus leans toward the side effects and pain, but I appreciate all I have so much more than I used to and look forward to many more adventures.
