I can’t write the post I was going to write. We are probably tossing the kitchen sink. Waiting sucks.
Once again, I’ve been thwarted by Betty. A couple weeks ago, my oncologist called Betty aggressive but dumb, and I was going to make a joke about Betty being frat boy joke. Of course, now I can’t because Betty might not be as dumb as we thought. I was also going to write about the really unpleasant surgery I’d agreed to that would remove the last bits of my ear and leave me with permanent hearing loss. But I can’t do that now either because while we know there has to be more of Betty left in my ear, really unpleasant surgery is no longer worth the potential benefit. I’ll explain.
Since 2011, I’ve had three surgeries to remove Betty. The first two attempts achieved clear margins, which were obviously deceptive since Betty regrew each time. We now know Betty appears to be traveling along my nerves, which itself is a well documented (if not well understood) phenomenon. When tumors do that, there are often gaps in their progression. Rather than one large mass, you have several individual masses along the nerve. It can lead to what appears to be clear margins if a surgeon cuts across a gap. If the remaining tumor is too small to see, no one is the wiser that more was left behind until the leftovers get large enough to show up on scans. Since the surgeons could not get clear margins this last time, another round of surgery that would have removed my entire ear and part of my skull could have helped up the odds that we got rid of as much of Betty surgically as possible.
Then we got my scan results. I don’t have anything else new to add about those at this point. In a way, the scans change nothing except most likely taking that surgery off the table.
As of now, my Kill Betty Team (primary/medical oncologist, current surgeon, and a radiation oncologist – aka, the poisoner, the knife man, and the arsonist) is discussing timing. Do we wait 4 weeks or so and have me rescanned to see if the spots disappear, or do we plunge ahead and start me on radiation and drugs now, possibly never knowing whether the spots were cancer? There are pros and cons to both.
Regardless, the plan is still to have me start radiation and the BRAF drugs concurrently. Once radiation is done, my doctor wants me to start immunotherapy along with the BRAF drugs. So I’d be going in for infusions again. Research on combining the two systemic treatments like that is still in clinical trials, which I still don’t qualify for because I’m too healthy. But, my doctor said he’s had good luck doing it and thinks it’s best to take the kitchen sink approach and throw everything at Betty at once.
The BRAF drugs shrink tumors in about 80% of cases and work for 7-10 months before tumors start to regrow. (In a handful of people, they work longer and it’s not understood why.) Immunotherapy eradicates tumors in about 25% of people. Combined, I have no idea what happens. But as long as I can withstand the side effects, I’m all for hitting Betty as aggressively as she’s hitting me. Especially if the bitch is trying to conquer my other organs these days.
P.S. Oncologist said that given the size of the spots in my lungs, the PET scan wouldn’t have shown more information. The spots are too small.