My Lenvima Life
(calendar updates below)
So it’s been like this:
- Thyroid Cancer found, thyroid removed
- Radioactive iodine (RAI) treatment fails
- Thyroid cancer spreads to lungs
- Cancer worsens, so I go on a clinical trial
- New drugs don’t work, so now it’s Lenvima
- And here we are, just in time for Lent
This evening I start taking Lenvima, a standard FDA-approved drug for RAI-resistant thyroid cancer. Let me stress that it’s not a cure; there is no cure for lung mets if RAI fails. Lenvima will shrink the tumors and buy me some time — keep me alive, basically — at least until another clinical trial comes along with a magical cure. Immunotherapy, maybe. That’s the future and the real hope for those of us with that ugly stepchild cancer, thyroid cancer, where we tend to get all the hand-me-down drugs.
OK, that’s the good news. Here’s the bad. Lenvima comes with lots of colorful side effects, the main one being death from heart problems. I’ll check my blood pressure one or two times a day just to be careful and my ticker is pretty sound, so that one doesn’t worry me all that much. The other side effects are not quite so dramatic, though they may make working a challenge. Let’s look at a few of my favorites:
- Perforation of the stomach
- Mouth sores
- Decreased appetite
- Weight loss
- Peeling of the hands and feet
As disturbing as this list is, that doesn’t mean I’ll get any or all of them, or if I do get them it’ll be minor versions easily treated and tolerated. Imodium’s on me, for everyone. And it may take a week or weeks before any side effects show themselves. I handled dabrafenib and trametinib, the two clinical trial drugs, with only minor side effects. As long as I’m not projectile erupting from major orifices I figure I can teach my classes. Hell, many of my students would argue my lectures are nothing more than projectile eruptions anyway, so they may not notice the difference.
This makes Lent seem even more — Lentish.
It’s an interesting time. My main doc is at MD Anderson, the country’s top cancer center, but my local oncologist will help me with side effects. And the insurance and drug companies have both been terrific in working with us in making what is a very expensive drug quite affordable on our end. So there’s that.
Tonight, then, I take my first dose. And let the frivolity begin.
Took first dose. It’s Friday morning and I’m still here.
One week on the drug. Blood pressure elevated, some body aches and a dry mouth, otherwise nothing significant to report. It’s early yet for the tougher side effects to appear.
It’s a month later, give or take a few days, since going on Lenvima. Today I started a blood pressure med to bring that down. Significant leg and joint aches, today a blinding headache, but nothing I can’t tolerate unless I’m feeling particularly whiny. Hell, it’s Spring Break and I’m in the office.
CT scans show major tumor shrinkage, reduced Tg (a cancer marker) from 6700 to 57. So this stuff works.
Off and on side effects. I actually took a couple of brief vacations off the drug while traveling because the last thing you want to do is go running for a bathroom every 15 minutes while on the road. Otherwise OK.