Half of my online interactions with other cancer survivors can be summarized as, “That’s not a realistic expectation. No, there are no conclusive studies indicating — FOR THE LOVE OF GOD, BLEACH DOES NOT CURE CANCER.” You might think I’m joking, but every week on Planet Cancer, there’s a new, outrageous, largely-unsupported claim that’s making the rounds. 95% of the time, it’s laetrile (which, just a reminder, is converted by your body to cyanide)(so, I guess it would “cure” cancer, but only if you aren’t interested in surviving that cure), in anaplastic astrocytoma groups, it’s medical marijuana (which I am a fan of, but there’s no support that it effectively treats cancer by itself)(there are some studies suggesting that it makes conventional treatment more effective, but only — that’s the critical word here — if used in conjunction with conventional treatment). When I was in treatment, it was the keto diet. I’m forced to point out to other survivors that if cancer could be effectively treated by lifestyle and diet, it wouldn’t be as dangerous as it is. If marijuana was an effective treatment for cancer, Bob Marley wouldn’t have died of melanoma.
This week, it’s a press release from Yale University about using a modified ebola virus to selectively target glioma cells in mice (if you really want to check it out, it’s here: https://news.yale.edu/2020/02/12/scientists-find-ally-fight-against-brain-tumors-ebola). This is where the American educational system so uniquely fails us, because some simple fact-checking would make my life so much simpler. For instance, this is a university press release. We need to treat institutional press releases with the same contempt and skepticism we usually reserve for major film studio PR releases and public statements made by politicians on the campaign trail — and for the same reasons. These are press releases; they are marketing gimmicks designed to drum up investors and generate free marketing buzz (which, I suppose, I am doing). Before we get into the nitty-gritty particulars of this one instance, let me remind everyone that less than one percent (I believe it’s half a percent, but don’t quote me) of initial discoveries make it into a marketable, finished product. To put that into perspective, let us imagine a table with 100 revolvers on it. One of those revolvers has three empty chambers. If you’re not happy playing Russian Roulette under those circumstances, maybe think twice before hitting that “Share” button (this kicks into overdrive in election years, when most of us are being inundated with BS, anyway).
With that little stat (and hypothetical scenario), let’s go through how I actually evaluate “miracle scientific breakthroughs”
- Is this just a press release without any actual peer-reviewed scientific articles from academic journals to back it up? Be careful here; about half of the “miracle cures” I hear of immediately redirect me to scammy natural health sites that tell me laetrile (usually under the name “vitamin B17”) can “cure” me, and, coincidentally, they have some they’ll sell me at a discount. If the answer is, “No,” exit your browser and see if there are some undergraduate-level science courses you can take, because someone will scam you over your scientific illiteracy at some point. I use PubMed ( https://www.ncbi.nlm.nih.gov/pubmed/) as the gold standard peer-review search engine for all things biomedical, bearing in mind that there’s a good chance that a single published study will eventually be invalidated, found faulty, or rendered obsolete by other studies (translation: one study is good, multiple studies that use similar methods and have similar results is better, metastudies or composite reviews of studies are most-reliable).
- Is this actually in human trials? Go to www.clinicaltrials.gov — the FDA website for all human trials that might make it to the US at some point, and you can use it to track drug/treatment development. If it’s not on there, keep that page bookmarked, and regularly double-check it; it means your miracle cure isn’t ready for human testing, and it’s not terribly useful to your great aunt with cancer. If it’s in the “recruitment” phase of testing (when they’re looking for test subjects/patients), maybe e-mail that information to your great-aunt’s medical team (or the pertinent folks advising her on treatment).
- Is the company/group sponsoring the study worth >$250 million? This is a slightly harder thing to figure out, but, as a friend once pointed out, there has never been a biomedical company valued at less than $250 million that has brought a product to market. Tocagen was a buzzword in the brain cancer world a few years ago, until a product failed testing and effectively sunk the company. If not, reach out to them, see if they’re completely sunk, or if they’ve just shifted that product/test to someone else (this happened to the experimental chemo I was treated with at several points throughout treatment — it changed hands/companies)(but it’s still in testing).
- Can you find anyone else on Planet Cancer who has experience — positive or negative — using this treatment? Yes, the Internet gives Nazis a safe space to meet, and that’s bad; it also gives disabled folks or others living on the margins a place to connect. I’ve discussed my treatment with several other patients (one of whom is no longer in treatment, one of whom is still toughing it out)(MRZ is definitely not an easy drug to survive). I know one woman being treated for a recurrent glioblastoma using a modified herpesvirus, and, even though it’s effective (so far) at keeping the tumor down, the side-effects of the neurosurgery required to infuse the virus into her brain make me hesitant to consider it a first-line treatment in case of recurrence. If no one, anywhere, has ever heard of this treatment or had it administered, pause before hitting that “share” button.
It was with those four considerations in mind that I decided not to get worked up about Yale’s experiment in using a modified ebolavirus to stop glioblastoma (they didn’t pass Step 2)(probably because, no matter how desperate brain cancer survivors are, we’re not enthusiastic at the pitch, “Who wants a deadly tropical disease injected into a part of the body with virtually no immune system!”). I’d encourage everyone out there to use the same methodology — for almost anything, really, but especially biomedical developments — before deciding to send Great Aunt Kate that article about using a fungus found in cave centipedes to cure lung cancer in sugar gliders (again, you think I’m joking; but the specificity of some studies absolutely boggles the mind).