Dear Friends —
While it may not feel like it, the days are inching ever longer. Dashes of light are adding minutes to these post-winter solstice days, reminding us all that new chapters of our stories are possible. They are waiting for us to help write them.
My story continues to have all kinds of fascinating plot details (sidebar here to all those enjoying relatively boring chapters — remember to savor them!). General Leia and her lieutenants did fine work with their laser beams a few weeks back, and I continued on an oral form of chemotherapy. Depending on the day, and my mood, I have been a mix of grumpy, exhausted, just fine, actually better than fine, and mostly grateful. Grateful for science, for all of you and your continued prayers and warm wishes, for the miracle of Christmas, for a story that continues to beckon me forward to something new, and for my remarkable college kiddos. I know it. How on earth did they get so gorgeous?
Ok back to the plot, and all of its twisty turns. In recent weeks, my dear friends at the Colon Cancer Alliance have stood up a new research fund — generous benefactors have rallied to deploy dollars to what is now our nation’s second most deadliest form of cancer. These dollars are meant to move with equal parts urgency and boldness. Breakthroughs in immunotherapy and vaccines are within reach, and this new fund will spur giant leaps forward.
Step one for getting these miraculous dollars into the right labs came in the form of a summons to Miami. The top CRC oncologists and pioneers from biotech firms received invitations to spend two and a half days together in rainy Miami Beach to assess the state of play, debate paths forward, listen, question, grapple, listen again, and create frameworks for the smartest set of next bets.
And the smartest of the smarties all came. I was fortunate to join what can only be described as the Oscars for Colon Cancer — instead of Gerwig, Streep, Spielberg, and Lee I spotted the doctors I’ve long admired and birddogged. “Oh look! There’s Kopetz, and Sharma, and Lenz, and Lieu!” They were all there, along with biotech leaders armed with slide decks so complex that at points I wondered if we had drifted from speaking English to Italian. No matter — even without subtitles, I understood their message: every day we’re inching ever closer to finding ways to target CRC cancer cells. To slow them down, to remove them from the story all together.
I know what you all are thinking. “This is all quite nice to hear, but how does all of this hope for the future translate into the story at hand?” I’m thinking the same thing.
There’s hope in motion for my story too. Your favorite blogger is nothing if not a hustler. I’ve been pressure testing different clinical trials for weeks now, and one has emerged from my magnificent team at UCSF. Stick with me here, because this blog is about to get technical.
In recent years, our blood cancer friends have benefitted from what’s called a T cell engager approach — through the miracle of new drugs, a patient’s T cells are directed to sniff out antigens on cancer cells. And once sniffed out, the cancer cells are destroyed. Unfortunately, this approach hasn’t worked (yet) on those of us in the solid tumor world.
Yet.
Those of you following my story know that time is a constant character within the plot — put enough time on the clock and medical advancements may swoop in and change the chapter, perhaps even the entire narrative.
My UCSF team has encouraged me to enroll in a new trial that’s applying the know-how from a T cell engager approach that’s now tailored for solid cancer folks. Most of the trial participants are lung cancer folks; I’ll be one of only a handful of CRC patients in the mix.
I know what you’re thinking again. “But wait? Is there any promising data to suggest this new approach might work?” I asked the same question to the head of clinical trials at UCSF. She smiled and said, “Oh yes — let me send you a link.” This is the part of the blog where you can click on the link to see what’s what.
Welcome back.
I get it. It’s the headline of the link we think is equal parts adorable and low-key alarming: Regression of EGFR positive established solid tumors in mice with the conditionally active T cell engager TAK-186.
MICE?!!! Yes. We’re leaping from the world of mice to me. I mean, this story is just too much.
Before we all panic, know that I was able to buttonhole several of The Smarties in Miami for a little EGFR T-cell engager small talk. And here’s something fascinating — every single Smarty agreed this approach was a clever next step for me. Will it work? Nobody knows! Is it worth exploring? Absolutely yes.
In the days ahead I’ll have a scan and move through what are hopefully a final set of clearance criteria. Assuming all is on track, I’ll begin treatment on Jan 11 at UCSF’s Parnassus hospital. The first three times I receive the drug I’ll be hospitalized for about 72 hours — I’ve been told I’ll likely experience a cytokine release syndrome, which means a lousy fever and flu-like badness. And since I’m one step removed from a mouse, it’s better to watch me close while this new drug moves its way through my veins.
What will we nickname this new drug? Minnie, naturally.
It’s all so fascinating and overwhelming, isn’t it? At any point, I swing from reliable hope to a heavy dread. Where on earth is this story headed next?
For me, it’s impossible to know. But I’d like to invite us to envision a larger story at work now. It’s a bit of a future story, and hopefully one that’s grounded in more science than in fiction.
On a summer day in 2049 a mom of two kiddos will hear devastating news. “You have Stage IV colon cancer,” the doctor will say. “I’m sorry.”
And then her doctor will say something else. “This is a terrible diagnosis, but I want you to know that in recent years we’ve seen extraordinary breakthroughs, and your treatment plan will be tailored for you. You’ll receive a mix of chemotherapy, immunotherapy, and a personalized vaccine. Your long-term prospects are strong. Hug your kids tonight and let them know medicine is on your side. Let’s go.”
Our 2049 mom will likely wipe away her tears, lace up her boots, and climb her mountain just like I have. She’ll be cheered on by her own group of friends and family. And they’ll celebrate with her as she reaches the summit.
I think of this mom all the time these days. I think of her because there was another mom two decades ago who enrolled in a trial and became a mouse and did something brave. She did this for herself, and she did this for me. I’m here, about ready to step into 2024, because of her.
In my mind, this 2049 mom is a preschooler today. CRC cancer is spiking among young adults these days (no one knows why), and so she might receive her awful diagnosis when she’s in her 30s. Today she’s a little girlie, and when I receive my first dose of Minnie, I’ll think of her.
When I think of her, I think she might look like my all time favorite girlie, Lucy. Who, as a little girlie, was quite possibly the World’s Cutest Girlie.
This future girlie will one day grow up to be a brave and beautiful mom. She’ll dazzle us all with hustle and gratitude. She’ll know her long and purposeful life is due in great measure to a chorus of cheerleaders and tenacious healers who dedicated their lives to saving hers, and millions of others. She may even hear a story about a gathering in Miami, who put her life-saving medicines in motion.
What story could be better than that?
Here comes 2024. Let’s go.
xoxo
p.s. 2024 will also be the Year of The Brave In-Between. And pre-ordering has never been so simple!
So exciting, Amy! Praying for great results from Minnie and a year full of blessings and healing for you! The giver of LIFE is on your side. Love you!
Happy New Year! Here’s to you, your incredible trek up this mountain and to possibilities that 2024 holds. Still sending big hugs and bold prayers your way.