Ask A Survivor: Dreadful DIY Cures

My support group, who normally are my bedrock in generating stories, are all having a good week. We literally just did a very quick individual check-in (I might have revealed that my religious bent is “Lutheran atheist” and that, as guilt, self-doubt, and anxiety are my core emotions, I wouldn’t mind a weekend as a sociopath, just to get a break from my own mind)(none of this is news, BTW). How well are we, collectively, doing?
Q: How do you deal with a baby hawk that’s only 20 m from your house, and is now drawing unwanted attention?
A: Leave it alone for now, just let it rest until the “Bird man” gets here.
Q: Birdman?
A: Every community has some sort of specialist wildlife control expert. He may or may not be actually employed by animal control or the city, but someone will know a guy who knows a guy. AUTHOR’S NOTE: This is actually a thing; a number of years ago, when our parrot got loose in a parking lot and didn’t come down from a tree, I got roped into providing aid. I was in Florida, at the time, and the crisis was in central California, but I somehow managed to track down, through wildlife rescues and animal shelters, a guy who specialized in aiding birds in bad situations. It just floored me that my breasties somehow located another human, in a different postal code, with the same hobby/occupation. Just weird, y’know.
Q: And birdwomen?
A: Presumably, they exist; bird children don’t just get dropped off by the stork. Or maybe they do. We don’t know
Q: Is this what survivors really talk about when no one’s around?
A: Oh, heavens no, we discussed adding more meetings to the calendar, in addition to the wildlife-on-one’s-property issues.
Q: And this is something you’re happy about?
A: Absolutely. The first, biggest thing that gets permanently taken from you when you’re diagnosed is your sense of banality. You’d imagine you wouldn’t miss the mundane, but when that option is completely removed from your existence, you want it back. So, we indulged ourselves by talking about mindless stuff of no consequence, because there were no emergencies to address.
Q: But it’s boring!
A: I didn’t think so, at the time. And, frankly, life post-diagnosis comes in two flavors: Everything is on fire, and we’ll all die in ten minutes; and, boredom of such exquisite blandness that it could actually be mental packing peanuts. You learn to love the latter.
Q: And unhelpful!
A: Them’s fighting words.
Q: So, tell me about the weirdest cancer treatment you’ve heard of.
A: Oh, Jeez, that’s an entire Russian Novel unto itself. Are you sure about this?
Q: Absolutely.
A: Well, first, I have to point out that a clinical trial, even in the best-controlled, best-calculated, and safest conditions is, well… kooky, to say the least.
Q: What do you mean?
A: Ever had a nurse put on a full laboratory hazardous materials safety apron, mask, and gloves to handle a plastic vial of a substance that she will put into your veins in just 10 minutes?
Q: Okay, that’s a bit “off,” Next weirdest one?
A: There’s “essential oils and yoga.” You can always out an adolescent/young adult survivor by screaming into a crowd, “Have you tried essential oils and yoga,” and watching who starts foaming at the mouth. Seriously, we hear this one all the time.
Q: But you actually started going to yoga during treatment, correct?
A: *SIGH* Yes, but I also started exercising regularly (I was, at best, previously an irregular participant at the gym), improved my nutrition, sought appropriate treatment for my chronic insomnia, and started managing my overall health. Asking about essential oils and yoga is the cancer muggle equivalent of asking an aspiring actor if they have head shots — it’s a well-intentioned cheer by people using the only health terms they know.
Q: Any other profoundly weird and off-putting treatments?
A: Oh, I have loads of stories. You’ve undoubtedly heard of immunotherapy, right?
Q: Yeah, that worked for my great aunt’s bladder cancer.
A: Similar concept, in that it’s a term the general public is familiar with, but, due to some technical issues, it really isn’t a good idea for Central Nervous System cancers.
Q: But you know people who were in clinical trials for it?
A: Actually, yes, I know of at least one person who attempted it, and a physician with recurrent glioma who was offered a place in an immunotherapy clinical trial and opted for SOC and a chemo clinical trial, instead.
Q: And how did that work out?
A: They’re both quite dead, so, I’m hesitant to recommend it.
Q: But you were in a clinical trial, and it worked for you, so, if the science supports it —
A: If the science supports it, I’m game. However, it’s worth noting that in both of those cases, the oncologists wanted to perform an additional neurosurgery to inject an immunotherapeutic agent. The physician with recurrent glioma didn’t want to do that, because the odds of making it out of one neurosurgery aren’t great, and going in for multiple neurosurgeries is an invitation to disaster.
Q: And the patient who went through with it?
A: Suffered multiple dangerous surgical complications, lingered a few more months, and died.
Q: But there must have been some sort of scientific evidence to merit an FDA-registered trial.
A: Yes, but those trials are based on pre-clinical evidence. That’s data supported by studies in animals and in-vitro studies. In medicine, there’s actually a concept that there is a gap between what works in theory, what works in animals, and how it all plays out in a human body. In real life, if a patient dies due to a surgical technician leaving a sponge in someone, that gets taken into account when ascertaining the overall safety and efficacy of a clinical trial. If there is clinical data available on any given treatment, that trumps other information available. And, when judging basic safety of any treatment, it’s a simple, ‘The patient walked out of the hospital,’ or, ‘the patient didn’t.’ That’s my basic metric for a lot of the goonier treatments being peddled — “The patient lived” vs “The patient died.”
Q: That would seem to be a mostly-fair distinction. Any particularly bizarre and dangerous home remedies the brain cancer community should be especially wary of, aside from immunotherapy?
A: Grain alcohol and fruit.
Q: That’s a thing? That someone tried?
A: I swear to God. Admittedly, this was the Google Translate from Portuguese, and it translated as “Cereal alcohol,” which, I have to believe is some sort of mistranslation, because “cereal alcohol” sounds like it’s time for an intervention.
Q: And someone actually tried that?
A: Possibly; it was a Brazilian guy who got in touch with me on social media, but the considerable language gap makes me wonder how much of that story I was getting. The person in question was an anaplastic astrocytoma survivor who was clearly at the end of their rope, and casting about for anything.
Q: Sounds desperate. You really couldn’t do anything?
A: Yes, they were desperate. In all of these scenarios, my knowledge and advice-giving abilities are hobbled because all of my information when in a “Pen Pals” situation, as 99% of Internet interactions are (even Zoom, although that’s a much closer-to-in-person situation) is really the Venn Diagram intersection of, “What did this patient’s medical team tell them?” “What did that patient comprehend and recall?” and, “What do they feel comfortable telling me?” Then there’s the almost-never-overlapping option for, “Reality without the spin.” In the overwhelming number of brain tumor cases, physicians tend to go straight to, “Let’s talk about making you comfortable” rather than, “Let’s talk treatment options,” because the latter exposes practitioners to legal liability. Which isn’t to say that the medical profession isn’t trustworthy or incompetent, merely that bizarre, nonsensical DIY “cures” should be seen as a symptom of a deeper issue — incompetent medical teams that fail to communicate or do their jobs; patients subconsciously sabotaging treatment because they aren’t satisfied with the current results (or think there’s a better treatment protocol out there); and an almost abusively negligent lack of funding into clinical research. If we poured as much money into biomedical research and education as we did missile development, put a publicly-accessible system in place that objectively rated physicians, hospitals, and treatment protocols, and ensured actual, informed consent in all cases, as opposed to the, “Sign on the dotted line, please” procedure I’ve witnessed in far too many hospitals; we’d see an end to bizarre treatment attempts.
Q: So, even good-faith treatments don’t always work. What about cravenly cynical, pseudoscientific “cures” being sold by people with an obvious financial stake?
A: What, like Dr. Oz?
Q: Exactly.
A: Let’s talk about dog dewormers.
Q: Beg pardon?
A: That was my initial response when I first heard about it, too. Let’s talk about Joe Motherfuckin’ Tippens for a second.
Q: That language seems uncalled for.
A: I’m not really sure how to describe lethal quackery without some strong language. Admittedly, I do not know the full details of Joe Tippens’ story, but I haven’t seen any verification of his claims by anyone I would trust (there was an FDA-sponsored trial for using this drug in glioma patients that was completed in April, 2021 on 24 patients, and two dozen patients is not what I would consider a persuasive number), so, the alleged story is a guy (J. Tippens) developed small cell lung cancer. Joe was told to go home and say his farewells to his family. Instead, he tried an antihelminth drug, and he’s still alive.
Q: So, doggy drugs cure cancer?
A: Fuck, no. Given what I now know about surviving cancer, I will wager my bad leg that Tippens insisted on getting good clinical care, used the dewormer, and decided that the dewormer was the answer. It’s just like essential oils and yoga — correlation-causation error. But, you can’t make much money pitching people on single payer health insurance, budget cuts for the Navy, and transparency in the process like you can selling veterinary medications. So, now, among the other issues I have to wade through whenever discussing treatment options, I also have to start by debunking that carbuncle of an urban legend.
Q: But Tippens had lung cancer, it’s different than brain cancer.
A: Yes, but, for some reason, it’s metastasized into the world of brain cancer. It’s still not the weirdest rumor of a myth of treatment I’ve heard, though.
Q: Hang on. Stranger than surgeons injecting repurposed viruses into patients, or veterinary meds?
A: You don’t think long-term survivors develop that thousand yard stare just from the cancer, do you? Half of that trauma’s the shit we deal with after we get out of treatment, and that includes witnessing dozens of really weird attempts of survival that work about as well as the anti-iceberg fenders on the Titanic. Then, we get to watch our cancer friends slowly die, which works wonders for one’s sense of well-being. But, no, the weirdest one is probably the suggestion that petroleum cures cancer.
Q: Someone said that?
A: Not exactly; in one group, someone “innocently” asked if any group members had heard of treating gliomas using petroleum. I put the strategic quotation marks there because I’m genuinely uncertain how many of these questions are well-intentioned but poorly-informed, how many are due to translation and idiomatic errors, and how many are attempting to sway others to try some treatment before that original source commits to it. In what I would like to think is the most-charitable interpretation of that statement, someone got it into their head that Vicks Vaporub (a petroleum-derived product) is good for cancer. As someone with dreadful allergies, I understand a little of the reasoning here; you feel dreadful in spring or fall, you rub Vicks on yourself, and you feel better. However, “Good for congestion” does not translate into “Good for cancer,” or even, “Good for your health” (I’m not going to claim that Vicks is bad for you, but it is a petroleum product, if you use it, don’t go near an open flame, and don’t eat it, inhale it, or smear it on your eyelids). Either that, or someone saw my hyperbolic statements comparing chemo to being dowsed in napalm; in which case, if you are uncertain as to whether I’m being sarcastic or facetious, bet on sarcasm, and feel free to contact me for clarification.
Q: Is there any hope?
A: Yes. Yes, there is. Even though I’ll go to my grave bitterly complaining about underfunding cancer research and scientific education — possibly literally, if the disease comes back — I would also point out that glioblastoma has only really been systematically, scientifically, and aggressively treated since the mid-90’s. That’s 30 years. In those 30 years, we have developed at least three mostly-wide-spread treatments (four, if you include assorted surgical tools and techniques) on what is, pharmaceutically, a shoestring budget. To put this in perspective, this is the equivalent of making some weird independent film on your cell phone, with a budget of two days’ pay, and somehow getting a Golden Globe nomination; given the lack of resources, it’s an amazing achievement. Additionally, while I don’t know if scientific education will ever be a priority in this godforsaken country, my generation can, and will, fact-check people in real-time, so claims that gluten-free waffles cure colorectal cancer won’t last as long or spread as far. Additionally, Millennials and Gen Z seem far less-inclined than our forebears to treat opposition voices or arguments as equally-valid as scientists making claims, which is a massive blow to pseudoscientific claims which have, historically, depended upon being treated as equal claims to get publicity.
Q: Okay, just so we don’t end on a downer, do you have another, fun, “That is clearly bullshit, I don’t even have to get out the Smart Phone for it” story?
A: I was once told that ozone cures cancer. For everyone wondering, Ozone is a toxic gas that is extremely dangerous at altitudes of less than 20000 km. This is undergrad General Chemistry 101 knowledge — it’s right up there with, “If you inject bleach into yourself, you’ll cure Covid” in terms of ideas that are so obviously terrible that they’re not even worth investigating. And, if someone’s in maintenance chemo, maybe don’t throw out “alternate cures” without some solid clinical and academic evidence. But, sure, try it as a cure, and get back to me.