Today my doctor informed me that my first dose of T-20 is just a week away! How I have yearned for this day! Scalding tears of joy spilled copiously down my face, onto my heaving, bountiful pectorals, drenching my grey Donna Karan cashmere sweater. What cared I: "Let the damage be done!" I exulted, whirling around my physician's office, gleefully tossing several other patients' files in the air. The precious fusion inhibitor would soon be mine and I would have closure to end all closures....
Well, of course not. One doesn't live in New York, wear all black, and reach the age of fifty (fourteen years aware of my positive HIV-status) to get exuberant about anything. What really happened was that, after waiting since... early December?... my shipment was coming in. As the result of a new study, I was the first of three people in Howard Grossman's office to get T-20. It wasn't easy, but the effort wasn't mine. From the time the protocol was announced, a Phase III open-label exploration of T-20's safety for people who have failed all other regimens, there were hurdles, the most aggravating of which was "call-in day." The pharmaceutical companies (Trimeris and Roche) set up a specific time when physicians around the country had to phone; availability was on a first-come, first-served basis, and there was limited drug to be had (see Treatment Issues Volume 15, Number 4 detailing T-20's unique production difficulties). The volume of calls overwhelmed the insufficient phone lines, and getting through was hairy. And this was only to submit names! Each candidate was then reviewed as to appropriateness for the program. Several weeks later, I found out I had made it, and that the meds would come my way in February.
Don't think me overly blasé, but while I was gratefully anticipating this new tool against my AIDS, the intervening two months brought me distractions -- or horrors -- enough. I was receiving twice-weekly infusions of amphoteracin-B to fight a stubborn strain of candidiasis while recovering from a Christmastime bout of wasting, the most severe yet. And then, in the very beginning of January, my Mom died. At this writing, the weight's back, I'm still hooked up to the ampho, and the grief plays out its process. T-20 was something to look forward to, but eagerness for anything had been stomped right out of me.
Back in the doctor's office for the intake. Liza, the nurse-practitioner who administers all studies and trials in Dr. Grossman's office had given me an informed consent package the previous Friday and I'd read it during the weekend. It was one of the heftiest consent documents I'd ever put my hands on, though it was written in plain English rather than standard medico-legalese (example: "Can I be kicked out of the study?"). And I don't know where I got the idea that this drug had fewer side effects than others, but with a brief pause over stroke... and I'd be willing to gamble on that... the downside passed my muster, which is to say that no one has reported growing antlers or such. The intake exam included an ECG, blood-drawing, a dipstick urinalysis and lots of questions. Liza handed me a videotape to view between then and when I picked up the meds.
Whenever anyone assigns me something to read or view, I avoid it until the last minute, or never, if it's a high school book report. So the videotape waited until Friday morning, at which time I cozied-up with the procedures of self-injection.
There was nothing new here for me (except for the reconstitution process. T-20 is a protein, and its powdered form must be mixed with sterile water to be administered), so I concentrated on the tape's production values. Professionally done. High-quality video. San Francisco locale (every scene shot in open white rooms with crisp available light). And there's skin! The demonstration subject doffs his shirt to give himself a shot in his well-tended abs. The only treacly touch was the instructor, a young woman who's a little too upbeat for my jaded tastes at that hour and frankly could use her own dose of something to bring it down a notch. Minor distractions, but if I weren't already a long-time needle user (insulin, Serostim, Epogen, Procrit, testosterone) I would have missed the point entirely. How very "me."
At the doctor's office, I did my first hit under Liza's direction. No problems, but one potential annoyance, a possible future deal-breaker. The reconstitution takes 15 to 20 minutes if you tap the bottom of the vial and gently roll it around (no shaking!) and somewhat longer if you just let it sit. For someone like myself who greets the day with pills at 8 (no food!) pills at 9 (food!) protein shake, two packets of testosterone gel drying on my belly as well as the usual get-ready-to-go-out-the-door routine, another extended multi-step procedure (repeated at night) could quickly lose its charm and novelty. I'll bear with it, though.
Liza hauled out the accompanying supplies. YOU GET: One box safety syringes for mixing; one box safety syringes for injecting; a decent-sized sharps container; vials of sterile water; alcohol pads; the medication itself. BUT WAIT! THERE'S MORE: a small insulated bag for transporting chilled T-20 (must be refrigerated); instructions; an offer to participate in a marketing survey seventy-five days after your first injection ($50!) and a huge canvas tote bag to carry it all home in. (By the way, nothing has a logo on it. They've finally learned!)
So I've just given myself my fifth poke; no adverse reactions evident so far. Some people have complained about swelling under the skin at the injection site, but anything I've ever shot subcutaneously has given that effect; mine goes away within an hour. There was some itching with the in-office dose, and a vague feeling of momentary heartburn, which may have been coincidental. It'll go as it goes. It'll work or it won't or the results will be ambiguous, as most drugs are when you're on a heavy regimen. We'll see....
Que sera, sera... and yay!
Back to the GMHC Treatment Issues March 2002 contents page.