Day +23

Well, it’s February 3, a month from the day of Brad’s admission. Today he said that he feels the worst he’s felt to date, which is frustrating and hard to see. His gastrointestinal GVHD continues to be tremendously miserable, and the steroid treatment is not controlling it well. Thus, the doctors are stepping up the medication yet again, adding a new IV antidiarrheal medication—and if this one doesn’t work, they say the next step is tincture of opium. If that happens, expect a lot of quotes from “Kubla Khan” to grace the blog. Most unfortunately, he also has contracted conjunctivitis (pinkeye) and yesterday could barely open his eyes. The jury is still out on what might be causing the inflammatory response (there’s some thought it might be rare GVHD of the eyes, and the medical team is bringing in ophthalmology specialists), but they are treating every possibility with a big range of topical eye drops and ointments.

All that should treat his symptoms, but to treat the GVHD on a more macro level, his doctors have added a second type of immune suppressant to the tacrolimus Brad already gets. This aspect of his regimen has prompted a lot of questions from people, and it does seem counterintuitive. After all, the whole point of the transplant was to give him a new immune system, right? Why would they want to suppress it? The suppressing medications are to keep acute (and later chronic) GVHD at bay—to keep the new immune system from taking off too fast, attacking Brad (the host) and making him precisely as miserable as he’s been for the last several days. While the GVHD has been treated with steroids, they have been given a fair chance to work and so far they are not helping, so it’s time to take the immune system down a further notch or two.

Dr. R said today that what all this means for the long haul is that, given the severity of Brad’s GVHD thus far, he will likely need to be on more immune suppressants longer than some other transplant patients. He’s likely to be immune suppressed, then, for most of this calendar year. That means a special diet, no restaurants, no crowded public places, and so on. If all goes well, we hope this robust GVHD response will also mean a robust graft vs. tumor response, with the new immune system fighting the cancer as efficiently as it is currently fighting Brad’s gut.

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