Six Years and One Hour

(This is part lucky-number 13 in a series. Read the previous part here. New to the series? Start here.)

Six years and one hour ago, Heidi and I had no idea that her lung cancer was an oncogene-driven cancer. As that hour unfolded, we learned that her lung cancer is driven by the ROS1 mutation and that there might, just might, be something that would/could/maybe keep it at bay.

But here we are, six years and zero hours later, and she is still alive and kicking, praise God and His gift of modern science! It’s tempting to list off all the things we’ve done in the meantime, such as getting married the following day, traveling the world, making new ROS1der and non-ROS1der friends, moving (twice!), adopting a Great Dane, and so on—but that would be quite cliché. If you know us, you know that we’ve not held still for an instant, and you have probably shaken your heads in disbelief. No sense in making everybody else react similarly.

So instead of looking backward, let’s look forward.

The future for ROS1 patients and others who have similar oncogene-driven cancers is surprisingly bright. At the ROS1ders summit we just attended in Boston (the first having been held in Denver two years ago), there were nine people who have lived ten years or longer since diagnosis. That’s nine of the 47 ROS1-positive attendees who have survived for a previously-unthinkable time, getting better odds with each new advance in treatment. If you read my first few ‘blog entries, you will recognize that that kind of longevity was unimaginable to us six years ago! And, yet, here we are—eleven years from her diagnosis, six from the day we learned what was driving it. She is one of the nine.

And the cancer landscape got even brighter this week when Revolution Medicines’ RAS inhibitor Rasonque was approved by the FDA. Why’s that a big deal? Because in the trial it doubled median survival against standard chemotherapy—from under seven months to over 13! It works in a very similar way to the various drugs the ROS1ders have available. Those target the ROS1 protein; Rasonque targets the RAS protein that drives pancreatic cancer, inhibiting it so those cancer cells can’t grow or spread. Interestingly, Rasonque is in phase 3 trials for RAS-driven non-small-cell lung cancer, too!

To say it’s an amazing time to be alive would be quite the understatement.

All of the amazing science that’s happening at companies like RevMed and Nuvalent, whose own ROS1 inhibitor Jideytro just gained FDA approval in July, makes me want to know more. When Dr. Lin showed diagrams of a protein and its seemingly random configuration, it made me want to know why the ROS1-targeted drugs bind to that particular squiggly bit. What’s the magic that makes that happen? Why do the compounds of Ns, Hs, Os, Cls, and other atoms bind in the way that they do? How does that work? What kind of amazing magic lets these bright scientists cook up these compounds in the first place? I mean, just how do they make the sub-molecular bits and pieces join together just as they want them to? (With apologies to both Drs. Erwin and Lewis, my chemistry profs at Rose-Hulman, I never understood it even when you explained it.) What does the future hold for those squiggly bits and drug molecules?

That future is bright. And I’m grateful to be a part of it with Heidi and her cohort of ROS1ders. We certainly didn’t expect a recurrence when we met seven years ago, and we certainly had no idea when we were sitting on that church pew, six years and one hour ago, that what we were being told would end up being such a monumental and fundamental change in the way cancer is fought.

Happy Anniversary Eve, Love. I’m thrilled that we are both still alive six years (and a few minutes) later to celebrate this day—and given the track record of so many people before us, at least another few days beyond it.