IL-15: A new immunotherapy trial for kidney cancer patientsby Chris Battle, survivor on April 18, 2012
Crossposted from the Kidney Cancer Chronicles.
The National onal Institutes of Health is not to be trifled with. Folks there take security seriously. Arriving at the campus – and yes it is a campus, about the size of a small liberal arts college tucked away somewhere in the Midwest – you will be wanded, metal detected, possibly patted down and, if you are particularly shady-looking, likely stripsearched, interrogated and psychologically abused. They have good reason, I suppose. They have people like me locked away in there. Or they will.
Oh, yes. About that. I have moved on from Johns Hopkins (at least temporarily) to the National Cancer Institute, which is part of the NIH campus located in Bethesda, Maryland. I generally try to avoid Maryland for fear of excessive taxes and intrusive governments. However, I survived Baltimore; perhaps I will survive Montgomery County, too, though I think it can be more vicious than the gang-riddled streets surrounding Johns Hopkins. (Seriously, local cops shut down and fined some kids operating a lemonade stand on their front lawn during the U.S. Open last year because they didn’t have a license.)
I find myself wandering about, sometimes lost, in the NIH compound because Dena and I decided to start a new treatment plan, a very phase-oney Phase I trial at NCI called IL-15. It was time. Readers of my blog were getting cranky. The story of Sutent was getting boring: You take your pills every day, deal with a certain set of side effects, and check in with your oncology team and get a CT scan every three months or so. After a while, there wasn’t much to write about. And since I acquired cancer as a means to find interesting things to write about, Sutent became an unsustainable proposition. Plus, it wasn’t working.
So we have opted for IL-15, a low-dose cousin if IL-2. The upside is that only twelve people have ever tried this treatment, so there’s not a lot of you out there who have much information on it. About twelve I guess. So I’ll have plenty to report. The downside is that only twelve people have ever tried this treatment, so there’s not a lot of data to say whether or not it might work. When we asked the doctor about the chances of it working, he more or less shrugged. Then gave me some lettuce and sugar water, and a little cage with an exercise wheel.
The trial starts Monday, and I will be hospitalized for two weeks with daily infusions. In preparation, I have been undergoing testing this week to confirm that I qualify – that my heart is still beating, that my lungs are still inflating, that my ass still works.
Oh, wait, that sounds a little weird.
Earlier this week I underwent a bone marrow biopsy. My friends in the leukemia community can appreciate this, indeed are likely unimpressed by my experience. They have marrow sucked from more painful places than I. Nonetheless, until you undergo the procedure the idea of it can be a little unnerving, and my imagination is … well, spirited.
I was escorted into a minor surgical area and placed in a room with a lot of machines that go ping, told to disrobe and lie face down on the examining table. If you’ve ever been to prison, you can understand my hesitation. (Not that I’ve been to prison, but I have watched a lot of Law & Order.) Then I was injected with some local anesthesia in the lower portion of the small of my back. Dena began her regular routine of shouting warnings at the doctors and nurses: Watch it, he passes out … needles make him squirm like a little girl … dude, are you really going to stick him with that? Once the local had settled into place, they pulled out some kind of contraption and began screwing it into my lower back. I couldn’t see (being face down and all), but it felt kind of like they had placed an old-fashioned coffee grinder on my back and were corkscrewing it down to churn out some fine espresso. It stung a little, I suppose, but the disturbing part was just feeling the tool spiraling into the bone. The doc would say, “Okay, you’re going to feel a little pressure,” and then he’d start cranking. It’s like when you go to the dentist and they give you some local anesthesia but leave you awake and you feel them scraping and pulling at your teeth. However, I walked away unmaimed.
I know elderly women and young children who have undergone far more invasive bone marrow procedures, so I am hard pressed (get it, hard pressed? I’ll be here all week) to complain about my little encounter. And yet, that is what I do, and I do it well. So relax and have an espresso – on me. Literally. (Okay, not really literally.)