No news is good news.

A little bit of headache with a drop in temperature this afternoon resolved with some fluids. No other signs of CRS or anything else for that matter. We anticipate a minor moment of truth tomorrow or the next day, but I suspect the toci will pretty thoroughly mask any trouble, if any.

We are told the occurrence of CRS after the second dose is not predictive of any more such events. Some 90% of previous patients had at least one mild bout of CRS – some after the first dose, many more after the second, a few less after the third, and very few thereafter. The N of the study and subsequent experience are still not high enough to draw a lot of conclusions. However, reason, and some limited experience, do suggest that the presence of a reaction is a good sign that *something* is happening. This is a great comfort to those of us whose greatest fear is that the treatment won’t work.

(Posted a day later)

A somewhat eventful weekend. I got the second step-up dose on schedule Day 4 and was fine until Sunday (Day 7) early afternoon when I began to feel a little off, with mild headache, mild increase in my normal tachycardia, and a temp of 99.8. A dose of Tylenol fixed everything, but when I confessed at the next checkin time the on-call Doc said he didn’t want me masking CRS, so by evening things returned with an increase in my baseline tremor and now temp to 100.9 so it was time to be admitted. The fever broke with some fluids and antibiotics but it was clear I wouldn’t be getting the final dose the next morning.

Day 8 dawned with no symptoms but HR still 120s, so they went ahead and gave me some tociluzimab (an IL6 blocker) which worked rather quickly. They would have let me have Tylenol, too, but it wasn’t needed. The NCAA basketball final game was the sole salvation for an incredibly boring day.

Day 9 (Tuesday) the team came on rounds, reported all my cultures had come back negative, and offered me two choices: 1) get the dose right now and spend the night, or 2) go home now and come into the outpatient unit for the dose, delaying everything yet another day. I opted for 3) dose now, discharge after the obligatory 2-hour observation, and follow up as normal with the outpatient crew. My reasoning was that, especially with the toci on board and the previous CRS experienced only after the dexamethasone premed wore off, any problems if any weren’t going to crop up until Thursday at the soonest, so spending the first night in the hospital wouldn’t accomplish anything. They bought it.