Last night I was too excited to sleep, and I always sleep well, happily snoring the night away.
Here’s the backstory: The cancer I live with cannot be killed (until I die maybe, and then I hope it lives on in a research lab). That’s just how it is. But, as you’ve heard, my targeted therapy drug, the mighty Lady Lorlatinib, has kept it in check ever since my first targeted therapy Crizotinib let the cancer creep into my Central Nervous System, into the meninges of my brain. I am lucky to have a cancer that can be treated with a targeted therapy drug (a TKI). When I began Lorlatinib it was in clinical trial. Given that the cancer was in my brain lining, it was pretty much my only option, and I was very fortunate because not long before this someone with cancer in their meninges might not qualify for a clinical trial.
So, 3.5 years later Lorlatinib has been approved for a different “mutation” (ROS1 is really a gene fusion, but that’s too much for this story.), and it is still stomping on ROS 1, keeping things “stable”. The disconcerting fact of living with this cancer is that it is tricky and at some point it may (likely) change things up just enough to get out from under Lady Lorlatinib’s steel boot and go for a ride wherever it pleases throughout my body. And truly? There isn’t another Lady Lorlatinib just waiting for me, especially given that ROS1 is already in the brain meninges. There are other targeted therapy(TKI) drugs in trial, and chemo combinations being used for ROS1 that might be available, might buy us some more precious time. But no real Lady Lorlatinib.
The real story is below. Hope, possibilities, exciting enough to keep me awake. A future where this cancer may be treated as a chronic disease. Researchers dedicated to finding treatments for rare, yet treatable cancers. “My” oncologist, Dr. Pasi Janne, Director of Thoracic Oncology at Dana-Farber Cancer Institute, listed as a scientific advisor. A promising possibility, one that if needed, may be there to help me and certainly others to keep writing chapter after chapter in our life stories. Not tomorrow or maybe not even six months from now. Yet-promising possibilities! NUV-520 (Read about “her” under the heading Pipeline.) Need to click on word HOME first, I’ve discovered. Then, if on phone, scroll down. If on laptop, PIPELINE is at top.