Day Who Knows

I really, really expected to have more to report by now. It’s been so long that an update is due even if nothing much has changed.

Radiation therapy hit my gut pretty hard. Fortunately, I have a GI fellow daughter to point out that one feature of small bowel enteritis can be acquired lactose intolerance. After the first several weeks it became clear that was a major component of my trouble and Lactaid turns out to taste pretty good. Another major cluster of symptoms got a lot better when I dumped Cytoxan from my regimen. CT yesterday showed only a little fat streaking where the tumors used to be, and the left kidney looks like a kidney again (instead of an indistinct blob of whatever). Creatinine stable at 2.0, tumor markers quite low, Hgb hanging right around 10 with the option of Aranesp if/when it drops further. Last week we changed my baseline antiemetic from lorazepam to olanzapine and even if I’m still kinda stupid I’m back to eating actual food again. Doing so well, in fact, that we’re contemplating a ski trip middle of February.

Marginal renal function excludes me from most research protocols, so at this point we continue on moderately tolerable 3-drug therapy as a holding action while we wait for the Mayo bureaucracy to figure out how to administer teclistamab. This was approved by the FDA back in October for compassionate use, but the protocol is a bit complex and the Mayo is taking more than the projected couple of months to figure out how to get all the order sets entered in their software and how to get paid. Moderately tolerable is not a sustainable life, but is acceptable for at least a few more months for what I estimate is a 50-50 shot at otherwise drug-free (a la CAR-T) status expected from a bispecific.

Bottom line — no news is no news.