February 11 is my one-year anniversary taking Lenvima (generic name, lenvatinib). My Lenvimaversary, for lack of a better term.
I have thyroid cancer, the kind that failed to respond to the usual treatment. It spread to my lungs. Let me be clear — it’s not lung cancer, it’s thyroid cancer in my lungs. There’s really no cure. Chemo in the traditional sense doesn’t really work for us.
For a lot of folks this means life in “watch and wait” mode as thyroid cancer can grow slowly, or “behave itself” as my MD Anderson doc once said. Mine didn’t behave itself. Bad cancer! Instead it progressed, a fancy way of saying the tumors grew more quickly than we’d like, so after a brief try in a clinical trial I found myself on Lenvima, which is now the standard treatment in such situations.
Again, this is not a cure.
The drug buys me time. It also buys me a host of colorful side effects.
Want a sleepless night? Click on the Lenvima link above and read the list. Go ahead. I’ll be here when you get back. Not everyone gets all of them, mind you, and different folks get them to different degrees, but lemme just say I should’ve bought stock in Imodium before this all began. Fatigue, I get that one too, but that’s why God made coffee. I pump up before class, do my teaching gig, and then spend the rest of the day recovering. Hell, I get a lot of the other side effects too but I muddle through day to day, working (if being a college professor can be called working) and avoiding as many household chores as possible.
While Lenvima isn’t a cure, the first scan was heartening. Nearly all of my tumors shrank, some as much as 60 percent, and a key cancer marker dropped from 6,700 to 55. Them’s good numbers. My scans since then (I get one every three months, sigh) show stable tumors. So no more shrinkage, but no growth either. That’s the good news. The bad news is eventually the cancer figures out what the hell is going on and adapts to render the drug useless. That could be tomorrow, that could be a few years from now, and after that the medical pickings get slim. Odds are I’ll find myself shopping around various clinical trials, most likely of immunotherapy drugs that are the next big hopeful thing, although their success so far with thyroid cancer is mixed at best.
So every three months I hop on that big Delta bird from Atlanta to Houston to visit MD Anderson and my doc, who I really like and who is an expert in the field, and every three months there’s a CT scan and blood work and all the other pokes and prods to learn if the drug is still doing its magic. Just before every visit I deal with a bout of scanxiety. Will this be the time it stops working? Will I be okay for another three months? Should I spend my Delta Skymiles now, or wait?
Yeah, the trips are exhausting, but awful as they are they sure as hell beat the alternative, which not so very long ago was surrendering to fate.
There’s not a lot of research on thyroid cancer, at least compared to the other, sexier cancers. This may come as a surprise to you, but a thyroid isn’t as photogenic as a breast. Plus our drugs are hand-me-downs borrowed from other cancers rather than the products of research specifically into thyroid cancer. That’s life with the stepchild of cancers. We take what we can get. And we’ll take anything right now.
A couple of years ago, me being me, I asked my local oncologist how long I had to live. He predicted two to four years. I’m two years into that expiration date and I plan on telling him two years from now that, well, I plan on telling him exactly what it says in the image below, or maybe I’ll just walk in and show him the video on my iPad.
So here’s to hoping Lenvima keeps doing its thing, at least until a real therapy emerges that may actually be a cure.
Pass the Imodium, please.