DECEMBER 16, 2022 – Today, shortly after an hour-long ski workout in ideal conditions, I received a call from the coordinating nurse of a study in which I’d agreed to participate. The study is designed to test the efficacy of a combination of two medications in post-stem cell transplant, multiple myeloma patients. One of the medications I’d be taking even if I weren’t part of the study. The additional medication—prescribed and administered during my pre-transplant treatment regime—isn’t part of the existing standard of care for post-transplant patients.
Since the study is a Phase III clinical trial, meaning, this combination of medications already has a record of promise, I figured participation would likely add to my new lease on life since the transplant. My conclusion, however, was based on the premise that the algorithm that determines which of the 950 participants are in the half of the study that actually receive the combination of medications would select me.
As it turns out, the hours I spent reading the exhaustive consent forms and evaluating the potential risks of the dual medications was all for naught. That’s the bad news . . . I suppose, given that I wasn’t selected to be in the exalted group that will receive the two medications.
The good news—and I’m a “glass-half-full” person—I know is the same news as the bad news: I won’t be hauling down to Regions Hospital for a weekly “sub-cu” injection (into the stomach) for two months, then bi-weekly injections for another month. I won’t have to sit (“pace”?) around for seven hours after the initial injection, in case serious, untoward side effects erupt. In other words, as I joked to the nurse, I won’t have to read War and Peace for the third time. I can plan trips to the cabin without having to schedule around a weekly visit to the infusion center. I won’t have to worry about the potential side effects (divided among, “Everyone experiences [such-and-such relatively minor problems],” “Most people experience [such-and-so more aggravating difficulties],” and “Some people [MIGHT DIE!]”).
(On the other hand, I won’t get to walk up eight floors of the parking ramp plus two flights inside the hospital, guaranteeing a 10-flight count toward my daily quota of 75 flights of stairs. But I can make up the loss by one additional lap weekly around my x-c ski circuit in “Little Switzerland.”)
I recognize that except for avoidance of the “MIGHT DIE!” risk, I’m taking a myopic view of the “good news vs. bad news” balance. However my reaction might be characterized, though, I can’t alter the result. A computer program made the choice. No one whom I could theoretically influence could alter the outcome.
The coordinating nurse has spent hours talking with me, walking through the consent forms and patient surveys. She knows me well and laughed when I told her yesterday during the “Psychological Conditions” portion of a survey, “If you think I’m half crazy, you’re only half right.” She didn’t laugh, however, when I asked, “Am I still entitled to the $5,000 you told me I’d receive for participation in the study?” When I added, “Or was it 10?” she exhaled—with a laugh.
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© 2022 by Eric Nilsson
