Five days ago I wrote about two simultaneous crises: one from swallowing and breathing poorly, and the second from PDL1V no longer holding back the tumors. Despite those beautiful scans in May showing extensive tumor-size reduction, the most recent scans show “Continued neoplastic disease progression throughout the neck as described. Of note tumor results in significant narrowing of the supraglottic airway.”

Sounds bad, is bad.

The installation of a new PEG tube means I can inject food without having to worry so much about how poorly I swallow. The new PEG tube feels like defeat in many ways, but my weight is hovering around 125 lbs and no longer falling hard. I also wound up staying inpatient after the procedures far longer than I should have, which cost weight and muscle mass. I’ve also been ravaged by saliva and mucus production again, which are almost as crazy-making as they were last summer. Still, I’m better able to swallow now than I was then, and the PEG tube means I’m less likely to starve death in the short term.

Secondarily, I wasn’t sure whether I’d have the strength to start a new clinical trial outside the Phoenix area. One challenge Bess I have faced since starting to pursue clinical trials, though, is that Arizona is pretty much a dead zone for the better head and neck cancer clinical trials. There are some at HonorHealth Research in Scottsdale (and the people who work there have, like almost everyone in clinical trials we’ve encountered, been helpful), but their most promising trials were “A Basket Study of Customized Autologous TCR-T Cell Therapies” from a company called TScan and “WTX-330” from Werewolf Therapeutics—and neither have slots available. The TScan trial may work, but, to paraphrase one oncologist we talked to, “We’ve been trying to get customized T-Cell therapies to work in solid tumors for a long time and keep failing.” Eventually someone is likely to succeed, but is this the moment, in a field littered with past failures?

As of right now (and highly subject to change), there’s a slot for Beigene’s BGB-A3055 in Dallas, Texas, and multiple sources report seeing some success with BGB-A3055 in head and neck cancer patients. Given how resistant head and neck cancers are, even “some success” is uncommon and attractive. Even a few days ago, I didn’t think I’d have the strength to fly for a new treatment, but dosing would start in early August, and by then I hope to be physically capable.

In early April, before starting PDL1V treatment, I was teetering on the edge of terminating treatment and exiting. Despite how rough early treatment turned out to be, continuing was the right decision. Once foreclosed, treatment options will not readily open again, and my tumors are so aggressive that “too late for real treatment” will become reality rapidly. If the exhaustion becomes too great, exit is always available, in a drawer, quietly lying in a pill bottle.

The story for now goes on; things have stabilized some, for now. Eating and sleeping might improve. If the mucus improves, I’ll probably be able to breathe and thus sleep more easily. Being able to think and write again would be nice.

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