Is Sutent working? Depends on what the definition of is is.
I figured today might not be the best day when Dena took a wrong turn onto the interstate this morning heading for Baltimore. Or, I should say not headed for Baltimore. It’s not an uncommon mistake, as the Capitol Beltway had been turned into one long, snaking mass of construction and confusion by our local governments. You don’t think I’d let her off the hook, though, do you? No, I milked it for all it was worth and gloried in my smug righteousness. (I had told her she was making a wrong turn and she told me I was wrong.) I enjoyed my advantage, that is, until we got to I-295, encountered another hot mess of construction and bewildering detour signs and Dena asked which we should go and I promptly directed us into Southeast Washington D.C. From which we were unable to emerge for another quarter of an hour or so, hopelessly lost trying to get back to 295. Advantage lost. By the time we arrived at Johns Hopkins, Dena had managed to turn the tables entirely and blame me for missing our bloodwork appointment and breathlessly arriving just in time (okay, a little late) for the CT scans.
While we were in the lobby, a man named Greg came up to me and said, “Are you Dena Battle’s husband?” He was a fellow kidney cancer patient and was there with his family. I introduced him and his family to Dena. Turns out they follow our blog, as well as a kidney cancer listserv on which Dena is active and unafraid to make use of her Google medical degree. Like me, he’s a young guy willing to go as aggressive as possible to attack the disease. We were both pacing about a bit, waiting to get results, and it’s always nice to meet in person others who are going through this, trade stories, trade ideas and just know that you’re not alone in this. He and his family will remain in our prayers, and we hope you’ll keep them in yours too.
After the scans we had to get my blood drawn and, walking back into the lobby from the phlebotomy lab, we saw Greg and his family again and Dena, literally, shouted across the room: “Hey, he didn’t pass out.” The entire, very full lobby of people all turned and looked at me. Maybe I’m paranoid, but there seemed to be an awkward moment where the whole room was trying to decide whether to clap and hurrah or point and laugh.
Then we were ushered in to see Dr. Hammers. He pulled out the CT scan results and said, “So, it’s not that bad.”
This not an opening comment that encourages confidence.
We have some more progression in the lungs. The lung mets seem to be on a determined march, consistently undeterred for very long by whatever treatment we throw at them. The good news is that they are lazy. Or bored. Or stoned. Something. Point is, they’re not moving fast. Think of a bunch of highway construction workers. If the mets keep this pace, I’ll be around as long as it takes to finish construction on the Beltway. Which means forever.
Dr. Hammers felt that it’s worth staying on the Sutent for another cycle to see how things progress. I think this is the right decision, as we don’t want to cycle through too many different drugs too fast. The honest, if sometimes difficult, logic is that we’re trying to buy time. The longer we can hold back aggressive growth, the better. If the Sutent is slowing the rate of progression in any way, then let’s stick to it as long as we can before moving to another drug. The more time we can buy, the higher chance that a new drug comes along that could prove effective.
That said, we know that the Sutent isn’t the power hitter for us that it is for others. It may or may not be slowing growth, but the task ahead for Dena and me is to begin researching our next move. During our last meeting with Dr. Hammers, he noted that Sutent (and all TKIs) will generally show results quickly if they are working. While we had some good results with the lymph node mets, the lung mets had not responded. So we weren’t entirely shocked to learn today that we had some small new mets in the lungs, and some growth on existing ones. In preparation for such a possibility, we’d already begun laying out options. We discussed these with Dr. Hammers during our meeting. His thinking, and it meshes with ours, is that if the TKI line of drugs (Sutent and its sisters) isn’t necessarily working, then perhaps we try an mTOR inhibitor next. In short, both of these types of drugs block the blood supply to the tumors; they simply use different pathways. Therefore, perhaps I’ll respond better to the different pathway. If that option doesn’t work, then perhaps we go back to a TKI such as the latest that’s come to market — axitinib (Inlyta). Finally, we will evaluate any new clinical trials that may emerge that appear promising. (This is another reason to stay with Sutent for now; once you’ve tried and failed three different treatment regimens it becomes difficult to qualify for clinical trials. You’re kind of like the guy who keeps losing his job; the research companies are reluctant to hire you.)
Dena is going to follow up with a post that will provide more detail on the treatment options. Like I’ve said in other posts, having an advocate with you during these appointments is invaluable. While she and Dr. Hammers discussed options, I was in another world. Once I read between the lines about the efficacy of Sutent for me, my mind went elsewhere. Like golfing and why I can’t seem to square my club at impact. Like our upcoming 10-year anniversary trip to Jamaica. Like lunch, and a hankering for pizza. Like going home and whipping my daughters in a game of Just Dance on our Xbox. Like just getting the hell out of there for a while and thinking about something besides cancer.