Life at NIH: Side effects are manageable, daytime TV is not

We are about a week into the treatment, with a little more than a week to go, and there have been no fireworks. I have not passed out once. No kidney failure, no hallucinations. Not even some crazy heart rates. IL-15 is definitely not IL-2.

My temperature has idled low at about 95.7 in the mornings and then creeps up a bit in the afternoon.  My blood pressure similarly starts out low but does pick up some in the afternoon. My platelet count dropped enough to cause some mild anxiety among the oncology team, but it has been climbing slowly but surely for the past few days. There has been some mild capillary leakage. My red blood counts are a little low, phosphate a little high.  Nothing to get too worked up about.

In terms of side effects, I haven’t faced anything severe. I get an infusion each morning at 10 a.m. via PICC line. This takes about half an hour. Two to three hours later I start to feel the effects in the form of some flu-like symptoms – muscle aches in the shoulders, pretty grinding headache, fatigue, loss of appetite and an exacerbated cough.  Some folks get chills, even rigors, but I have not.

Such is my routine each day. And, after a week in the hospital, this routine has begun to wear a little. Although I am not fighting side effects all day long, I don’t have as much free time as I thought I might. I had visions of reading, writing, winning high-stakes Yahtzee competitions, maybe even a little Salsa dancing.  Because this is a clinical trial, however, I am under constant surveillance, with continuous interruptions. For example, nurses check vitals (blood pressure, heart rate, temperature, etc.) every fifteen minutes for the first hour after the infusion and continue at a gradually lessening pace through the day. This takes up the first half of the day. The second half of the day, when some time is freed up, is dampened by the side effects. You hate to complain, but after a few days of this routine you enter an einsteinian time zone in which hours and minutes become confused, days become an abstract concept, and daytime TV grows mythic. What the hell happened to Regis, anyway? Where did he go?

I do not think I would make a good prison inmate. First, I don’t like getting raped. Second, I don’t want any more tattoos. Third, I have come to realize that I don’t do well cooped up in the same room for more than a week. Luckily, my mother has come up from Savannah and has hung out with me for the entire time and provided company. Less lucky, she has gotten some new tattoos and has begun referring to me as her bitch.

More from Immunotherapies (IL-2, IL-15, PD-1s, etc.)

• Not the news we had hoped for

• Tell the FDA that we need Tivo!

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  I’m Back — and Back on Cabozantinib

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  Cycling off Cabo didn’t work as planned