Most of the “alternative” cancer care groups are quacks and charlatans pitching dubious diets, but “most” is not “all” and an outfit in Mexico called “The Williams Cancer Institute” caught my attention because they’re offering legitimate treatment—for example, they’ll inject legitimate immunotherapy agents like Opdivo straight into tumors.[1] They’ll also perform Pulsed Electric Field (PEF) ablation, which has some research showing potential efficacy; PEF may stimulate tumor antigen release in a way that allows immunotherapies to identify the tumor antigens and thus attack the tumors themselves. The possibility of tumor response from PEF and immunotherapy is real, as opposed to the “eat our special diet” people, or the “energy” healing people, or the homeopathy people.[2]

In “The financial costs of healthcare costs, or, is keeping me alive worth it?”, I wrote about whether from a society-wide perspective the care I’ve been consuming passes a reasonable cost-benefit analysis. But that essay primarily assumes a system in which health insurance or a public healthcare system is paying—I’ve also faced the question more concretely, because the Williams Institute is in Mexico and all payments are cash. Is $200,000 for treatment that would probably not cure me worthwhile?

Bess and I learned about the Williams Institute through an oncologist who had a patient fly down to receive treatment. I don’t know how that person turned out, and the lack of prices on the William Institute’s website is ominous (perhaps they research each prospect and adjust prices based on perceived ability to pay), but Bess and I figured that immunotherapy injections would be useful in a specific situation: when I’m between clinical trials. In that scenario, the previous treatment has stopped working, and I’m not yet eligible to receive the next one. This last happened to me in March. Clinical trials are a lot cheaper than the Williams Institute—the drugmaker pays for the drug itself, and insurance should cover the ancillary care. But clinical trials are only good if I can make it from one to the next.

Most clinical trials have a “washout” period, which means two to six weeks between the cessation of a previous treatment and the start of a new one. That washout period, however, can be enough time for tumors to grow and compromise essential structures, or metastasize into new organs. In addition to the washout period itself, some trials may not be ready to go in the right timeframe—trials are constantly opening and closing. Sometimes they’re full and sometimes they have spaces. Matching patient to trial is an ongoing challenge. In March and April I got caught between trials, with a month elapsing between me learning on Mar. 13 that MCLA-158 / petosemtamab had stopped working and me being able to start Seagen’s PDL1V on Apr. 15. The PDL1V trial only had a two-week washout period for patients who’d failed their previous therapy, but Seagen was switching trial “arms,” and so despite me needing a new trial, I couldn’t be dosed before Apr. 15; I think I was the first person dosed for the new trial arm. An immunotherapy injection from the William Institute might have helped me stay alive, and it’s possible that the next period between trials will allow brain or bone metastases to develop—which truly herald the end.

Immunotherapy injections are actually good ideas, and, like the guy who runs the Williams Institute (“Dr. Williams,” I’m guessing), some interventional radiologists in the U.S. will now do pulsed electrical field (PEF) ablation. Bess found one of the companies that sells PEF machines—the “Aliya” by Galvanize Therapeutics—and contacted Galvanize in order to figure out which docs might do PEF in the U.S.; watch this space for more (Bess is clever and resourceful).[3] PEF is best given in conjunction with an immunomodulator, but I’ve not seen any data indicating PEF and immunotherapies are curative in patients who, like me, don’t respond to systemic immunotherapy. In summer 2023, I got five rounds of systemic pembrolizumab (Keytruda) and it did nothing. Immunotherapy might succeed if it’s potentiated by something like PEF, since PEF sends tumor antigen into the blood stream as an immune trigger. A lot this, however, is theoretical, and not highly supported by research.

Intratumoral injections are no panacea. Moderna’s mRNA-2752, for example, is an intratumoral injection therapy that we’ve heard has not been especially efficacious. There are other efforts underway. It’s not clear that the intratumoral injections are more efficacious than the systemic injections. The overall Williams Institute treatment approach falls into the category of “probably won’t hurt; could help.” So Bess and I filled out their forms and gave them a bunch of my records for evaluation. Given that four tumors live near the surface of my neck, I’m a great candidate for intratumoral injection. Bess and I imagined that each injection session might be something like $10,000, and that’s an amount that seems reasonable trying in order to swing from trial to trial.

Instead, the Williams Institute’s email to us said that they recommend “three to six” treatments of $25,000 – $30,000 each: in short, $200,000 for treatments that are unlikely to do more than buy a few months of extra time, if they do that. Extra time with Bess is nice, but $100,000+ is a lot of money, and I don’t want to leave a black hole of debt behind me for no reason. Two hundred thousand dollars for a therapy that is potentially curative I can see being worth it. The same price for something that is mostly being sold to the super rich and/or to suckers? A lot less attractive. I don’t want to squander scarce resources and the Williams Institute seems like squandering. Others will have different analyses. I think $200,000 is better invested the future. I’m unlikely to be part of that future, but I want it to happen anyway, and to be great.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

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[1] There are also a bunch of testimonials that conveniently don’t list other treatments the testifiers might’ve received.

[2] I keep getting comments from people regarding other forms of medical-related conspiracy; most of them don’t realize that Andrew Wakefield, the guy who stirred up a lot of conspiracy, simply made up data. He was and is a fraud, and yet millions of people repeat his incorrect claims without realizing as much. Epistemology is hard.

[3] In this sentence, I found it hard not to write that “Bess galvanized Galvanize to tell us who provides PEF.”