And the Scans Say

Disease progression. That's what my scans from this week show...tumor growth in the lungs and metastases to the brain. Apparently my wonder drug is no longer working wonders. Given that the typical median time for remaining progression-free on crizotinib is 18 months, and given that I am acquainted with a number of ROS1+ patients through a Facebook support group who have gotten several years without progression on the drug, I am really disappointed that crizotinib has not worked so well for me, and that I've only gotten 6 months. Still, I am grateful for those months. I've been able to live a more or less normal life, return to work, and do fun things with family and friends. So, there's that.

Why isn't crizotinib working anymore? We don't know. But, when I had my genomic profile done back in November 2017, a number of other mutations were identified along with ROS1. It's possible one of those is causing the cancer to progress. The problem is, none of those mutations has been as well-studied as ROS1, so there aren't targeted treatments available for those specific mutations. And honestly, we just don't know if one of those mutations is actually causing the problem. It is possible that a different TKI (tyrosine kinase inhibitor like crizotinib) currently in clinical studies might be effective, but we just don't know. It's also possible a combination immunotherapy/chemotherapy treatment could stabilize the disease, but again, we don't know. Researchers are studying mechanisms of resistance, but there are so many factors that can contribute, which means getting answers as to how to address resistance is taking a good long while.

My oncologist's most pressing concerns at the moment are to have the half-dozen small new brain mets treated as quickly as possible and to figure out a new treatment plan overall. So, I have a consultation scheduled with a radiation oncologist for tomorrow, and if it seems like a good option, I'll likely get the brain tumors zapped. It's not a permanent solution, as the chance of recurrence is pretty high with just radiation alone, so we'll definitely need to add another kind of treatment to address that and the progression in my lungs. Dr. Peacock is meeting with her tumor board this morning to discuss my case, and we'll start strategizing after that. I'm leaning very strongly toward getting another consultation with a ROS1 expert  as well to learn more about some clinical trials for which I might qualify.

Honestly, this is not the news I expected to get, as I've been feeling quite well. I just wrapped up grading for my spring semester and had decided, for the first time ever, not to teach over the summer so that I could take time for other things I love to do. In fact, I've been feeling so well that my husband and I had been making tentative plans to do some ambitious traveling to visit friends and family. I was envisioning a summer of road trips and even a quick jaunt across the pond to visit friends in Holland. Now all that planning seems like hubris. We still might get to do some of those trips, but it will just depend on my treatment plan at this point. Stay tuned, and I'll keep you posted.