Headlines: I’m going on a new cancer drug. It’s called lenvatinib (the brand name is Lenvima). It’s meant to be permanent, but there are side effects, and they need to see which ones I get and how I’m affected. So I’m cancelling all my travel for the next 3 months (my hope/goal is to be able to go to Berlin in June 2019) and in the meantime will more or less undergo a science experiment on myself. The hope is that I am going to be able to go on with my life indefinitely once we get everything stable, which is the whole point of the drug. My oncologist specifically said his goal was that I be on the highest possible dose while still being able to live my life. But that means experimenting.
When I started blogging again I did not plan to return to my cancer patient hobby, but here we are, and the timing–blogwise and even lifewise with me on leave from teaching this term–is actually good in a way.
In case you missed the previous episode, here is some background:
I have metastatic thyroid cancer in my lungs. It was found when I was diagnosed with aggressive papillary thyroid cancer in 2009. My team of doctors been “watching and waiting” ever since, punctuated by occasional freakouts and one more round of radioactive iodine.
The big nodules in my lungs have been growing 1-2mm (with a margin of error) per year. And little ones keep appearing. So we’ve been in a “do nothing” (aka “watch and wait”) phase for almost a decade now. I have never said I am in remission, but on the advice of a good therapist, outside my test periods, I have operated in denial. You can’t spend a decade running around with your hair on fire saying “holy shit I have slow growing cancer in my lungs” every day. Also, my endocrinologist told me he expects me to die from something else.
Now it’s almost a decade later. 1mm a year for 10 years is 1cm. And my three biggest spots are now close to an inch in diameter because the were already around 1cm when we started watching them. And there are more of them. Carrie came with me for my last CT results and was visibly shocked; I see the insides of my lungs every 6-12 months so am used to it. Later our “earth at night screensaver” came on the TV and she joked “that looks like your lungs.” Sort of like this but definitely not in the shape of the United States and remember, there are only 3 big spots:
The original plan was to watch and wait: do something if my spots started multiplying more rapidly, or approaching the pleura, since that would be an escape route out of the lungs. I am still not in any immanent danger, and we don’t think I am symptomatic. (Though I was rediagnosed with asthma in the fall, which could theoretically be related.)
But things change. There’s a new drug, and my team of doctors has started taking a slightly more aggressive attitude. And while the spots aren’t at my pleura, they could get there at some point in the future.
The drug is called lenvantinib. Brand name Lenvima. The key thing to know is that it is part of a new approach to cancer called “targeted therapy” that targets cell behaviours other than rapid division, which is what normal chemo does. Also “targeted therapy” is a nicer name for the treatment than the old name for long term approaches like this–“soft chemo”–which evokes images of soft rock and soft boiled eggs, neither of which I find appealing. Also? It is very expensive, but I believe my insurance will cover it. More on that in a future post.
Levantinib is part of a class of drugs called “tyrosine kinase inhibitors.” It is not actually known for certain how they work. Even Lenvima’s own website hedges its bets:
LENVIMA is believed to block the signals that allow the cells (tumor and normal) to survive and multiply.
LENVIMA is believed to block signals that help blood vessels grow. Blood vessels support the tumor’s survival and growth.
“It is believed” is not a phrase you often hear in Western medicine, but at least I’m on the cutting edge here.
I will have lots more to say about how I feel, what I think about the drug, changes in the online culture of people with weird thyroid cancers from 2009 when I started, drug companies, Canadian medicine, and on and on.
More blog fodder in coming days and weeks. If you want to know how I’m doing the important information will be findable here.