Ask a Survivor — Telemedicine Version

That’s right people, thanks to Zoom, you can have support groups without ever leaving your home! The perfect solution for everyone who wants to attend an AA meeting without the hassle of putting on pants!

This morning, at a very reasonable hour (9 am), which has become horrifically early because I’m now almost entirely nocturnal nowadays (There is virtually no upside to being awake during the day in the middle of a pandemic — everything is closed, no one’s working, if you see another person, avoid them like they’re an extra from 28 Days Later, etc.), I got to run a Q&A-style glioblastoma survivor support group. I was sent several questions beforehand so I wouldn’t be caught totally off-guard, but here’s a more in-depth version of things.

Q: How is regular cancer different from GBM?

A: As I mentioned at the time, “regular cancer” is now my favorite idiom on Planet Cancer, and I think my friends, the leukemia kids, and Bob (the only person I’ve met who has survived more neurosurgeries than me — 4 — because he has really aggressive metastatic prostate cancer) might be a little miffed that they’re not cool enough for glioblastoma.
However, I feel like this needs to be broken into two sub-questions, how are cancers of the central nervous system (CNS — your brain and spinal cord) different from other cancers, and how GBM is different from, say, ependymomas or oligodenrogliomas? For the former, there is the fact that you’re working within a confined space that’s anatomically and biochemically walled off from the rest of the nervous system; so tumors that might be polyp-sized in the colon can cause serious, dangerous symptoms and have fatal consequences. Also, because the CNS is a separate system, very few chemo or immunotherapy agents will reach the cancer; and surgical options are limited and dangerous, and you can only cut away so much brain before you run into worse options. As for the second part; GBM is, by definition, always considered Stage IV (as someone once dryly noted, “There is no Stage V”); so, you have to bear in mind that if you’re comparing cancers, GBM has more in common with high grade liver cancers (you can only cut out so much of that before you kill patients), and probably has a comparable survival rate, for similar reasons (AUTHOR’S NOTE: I have not checked on Stage IV liver cancer survival rates; I’d imagine they’re not encouraging). Because the brain has no pain receptors within it, tumors starting there can grow quite large undetected, and, by the time patients display symptoms, it’s usually Too Late. Having said that, you should always seek appropriate medical care for all cancers, and I, personally, agree with Henry Friedman’s (of Duke University) philosophy that GBM is not a terminal condition, and every patient must be considered curable until proven otherwise. The one glimmer of silver lining is that GBM rarely metastasizes outside of the CNS, which might seem like cold comfort, until you start attending general cancer groups and hear horror stories about patients whose cancer metastasizes (those are called secondary cancers, BTW), and now have to deal with not only that second, concurrent cancer, but their primary cancer, too. Which sounds like a hellish scenario, but we all have our cross to bear.

Q: What is Standard of Care? Does it work for everyone?

A: Standard of Care (SOC) for GBM is similar to most other Stage IV cancers — surgery/biopsy, radiation (and chemo), and 12 cycles of maintenance chemo (called the Stupp Protocol), and wearing an Optune Device (a weird skull-cap-looking device that inhibits tumor growth and metastasis), followed by aggressively monitoring the disease (MRIs every 3–6 months).
SOC works in 5% of overall GBM cases, but, remember, that includes “lucky” ATRX mutants like myself (who respond better-than-average to SOC, with a 30–50% survival rate)(I’m at 26 months No Evidence of Disease, BTW), and folks like the late John McCain, who got pretty much the worst possible variation of GBM and lasted less than a year, and all sorts of various in-between possibilities. My own oncologist is on record saying that, genetically, this is dozens — possibly hundreds — of unique subtypes of brain cancer with a common ancestor cell. With that in mind, the most successful patients I’ve heard about will sit down, discuss the pros, cons, risks, and costs of SOC, and develop some sort of individualized treatment plan that best works for the patient and their quality of life. I still have a slight limp that keeps me from sprinting, dancing, or tackling more-advanced yoga poses; I consider that a rather small price to pay for retaining my memory and writing skills. I have a dancer friend who would consider that trade-off not inconsequential.

Having said all that; I honestly think science doesn’t have the numbers to make a conclusive decision about the efficacy of SOC; I can count on one hand the number of GBM survivors I’ve heard of who completed all 12 cycles of temodar; I know easily 3–4 times as many who discontinued it after dangerous side effects, or the disease kept progressing (If SOC is not working, immediately stop or modify it — there are a surprising number of “alternative” chemo protocols, such as lower-dosage temodar taken more frequently).

Q: Should I be doing XYZ treatment? What should I do if my doctor insists I do something — or stay away from something?

A: I’d recommend everyone starting with SOC and doing what they can to make it more effective, or including SOC into other treatments, but this kind of veers into the doctor-patient relationship, and how much you trust your oncologists. My own oncologists — the Warlocks — were pretty good about giving me my head 90% of the time, so, when they told me I absolutely had to do something, or forbade something, I did take it very seriously.

However, you’re going to come across all sorts of weird stories about Vitamin C infusions, or skipping chemo and going with essential oils and yoga; to the point where one of the larger brain cancer Facebook groups I admin has an off-shoot group dedicated to figuring out if people making those claims ALSO did SOC, or experimental treatments, or some other, slightly-more-conventional treatment program, and they just latched onto the vitamin injections because it’s more memorable to claim that smoothies cured your cancer than to tell everyone that you took a ton of dangerous, highly-controlled drugs for a year, and made it a point to get a smoothie a day (if you ask me about treatment, I’ll endlessly gripe about how miserable the experimental infusions made me, because spending 3–6 days a month in absolute agony is more memorable than the comparatively tolerable chemoradiation and SOC I also underwent). Human memory error is a real thing, especially amongst people with an organic brain disease, so you have to weigh testimonials and anecdotal evidence as such. I saw one researcher claiming a direct linkage between Lyme Disease and GBM, based on a few dozen patients — only problem is; she was based in the Pacific Northwest — I have no doubt that any studies done in sub-Saharan Africa would find definitive linkages between HIV status and GBM. There’s a lot of potential for correlation/causation confusion, and everyone should take every data point with a bit of skepticism and try to put that information in context, and remember that this is an extremely rare disease. I have no doubt that if I could choose the case studies; I could statistically demonstrate that prayer cured GBM (I was actually prayed for and had a friend of the family light a candle for me in the Vatican — I don’t endorse that as a substitute for treatment, but I could certainly edit out parts of the story and details to show that Jesus favors me)(these are the sorts of things you do have to look out for when getting anecdotal data).

Q: What about… Clinical trials, drug repurposing/off-label usage, immunotherapy, medical marijuana, experimental treatment?

A: Clinical trials and experimental treatment are largely interchangeable; and they’re usually conducted by highly-qualified academic physicians (I’d recommend getting an academic physician anyway, if you have a rare, dangerous disease), and, oddly enough, the clinical trial I was in was testing marizomib — a multiple myeloma drug — for GBM. As far as other off-label uses; there are loads of examples of using other drugs as adjuvant therapy (there’s some evidence SSRIs — like Prozac — “sensitize” glioma cells to chemo; the antidepressant I’m on — Remoran — is correlated with decreased recurrence; the list goes on). Even though I think off-label usage of drugs is probably the immediate future of medicine, I would also encourage everyone only to do so unless under direct medical supervision, and don’t be afraid to change treatment (and/or physicians) on an as-needed basis (with the caveat that most of us need to treat the doctor-patient relationship as a “what have you done for me lately” thing — I hear all kinds of horror stories where oncologists get out of their league and there are many red flags, but, because this guy is a good friend of the patient, or did a marvelous job treating the first tumor, people overlook those subtle warnings). This disease is dangerous, poorly-studied, and unpredictable, which means, to survive it, you’ll have to be adaptable, quick to respond to any changes, and always demand the most aggressive treatment you can get. And look at how you can incorporate SOC (or aspects of SOC — absolutely everyone should get their tumor biopsied because it’ll have a bearing on medical decisions and th probability of various outcomes). I’ve written about medical marijuana, I think it’s great and everyone should consider it, although I doubt it’s curative by itself, but it’ll help with pain, seizures, nausea, and the side-effects of treatment.

Q: Why didn’t you use Optune Device?

A: This one was a remark that most of us in the group were not wearing the Optune Device. When I entered the clinical trial in December 2017, Optune was not considered SOC, so it was I wasn’t really offered it as a treatment option. Since I’m NED at the moment, I’m not really interested in getting one; but, make no mistake, if next week’s MRI (yes, that is when I’m scheduled for the next one)(in middle of a large hospital during a pandemic; what could go wrong?) shows progression, I’ll be fitted for one immediately.

Q: Why didn’t Company X follow up on this promising experimental treatment?

A: This was asked regarding the “here today, gone tomorrow” nature of experimental treatments and clinical trials. I don’t have the exact number in front of me, but it does cost a not-inconsiderable amount to run a trial, and each drug has to pass three testing stages before it comes to market; at each stage, the company has to look at the profit/risk aspects, and, yeah, capitalism is a bitch because it chronically undervalues human life. Having said that, even if the 50 richest people on Earth were diagnosed with GBM and they threw 90% of the planet’s wealth against this thing, I’m not sure we’d get better results. Only a miniscule fraction of all treatments — something like a half of a percent — make it through the testing process, and, yeah, part of that is undoubtedly because the company figures the profit margins are too narrow or there is no market and quits testing — but it’s also because, as we know from DARE, drugs are kind of dangerous, and there aren’t a whole lot that prove to be both safe and effective (in my experience, you can have one of those, but not both)(also, to give you an idea of how stringent safety standards are; aspirin probably wouldn’t pass current FDA testing)(that’s not a bad thing; we all want medicine, but I’d like to think we all want safe, effective medicine more). And, usually, most companies are required to keep tabs on patients after the trial — if everyone from Phase 1 testing suddenly dies from a massive heart attack, the company will immediately stop testing it, even if it’s in Phase 3 testing. This is especially true in cancer drugs, where it can sometimes take years for really bad side effects to show up (to give you an idea; my last MRZ infusion was mid-January 2019; I’m still getting blood draws on a regular basis because the researchers aren’t sure what it’ll do to my marrow)(there’s a fun “New Normal” no one warns you about). And there are a large number of recalls that are quietly made after a drug comes to market and the safety restrictions that regulate who’s eligible for this experimental treatment are relaxed, and post-market studies show that Celebrex causes head explosions in infants and octogenarians while taking cocaine (again, that might sound like a ludicrously specific scenario, but I can tell you from my time as an EMT, you absolutely can not underestimate the intelligence or decision-making skills of the general public).

Q: I’m terrified of a stroke/clot.

A: As well you should be. Radiation has a lot of terrifying side effects, chief amongst them being more cancer (I rationalized that one as, “More, unspecified cancer at a later date, when more treatment options are available beats dying from an already-diagnosed cancer with limited treatment options next week”). I actually suffered a “mini-stroke” (transient ischemic attack)(which isn’t exactly a stroke, but it predisposes me to cerebrovascular disease); I take baby aspirin on a daily basis and go in for regular high-impact cardio. Again, this is a discussion you need to have with your oncologists about which risks and how much risk you find acceptable vs the benefits of treatment, and what you can do to manage/minimize those risks. There is no such thing as a risk-free life — no one makes it out of this world alive.

Q: How do you manage seizures?

A: I had one seizure post-neurosurgery as a side effect of weaning me off of dexamethasone; now I’m on keppra, which I abhor (the key here is that I dislike feeling irritable and anxious slightly less than I enjoy waking up confused and scared in an ambulance); which seems unfair to me — I went 30 years without a single seizure, I got one because of a medical miscalculation, and now I’m an epileptic (it brings to mind that whole, “You fuck JUST one goat!” joke). I take keppra, CBD (which has some anti-seizure properties), Rick Simpson Oil (which also has some anti-seizure properties)(also, RSO is a great sleep aid, and, unless you’re driving, generally good for what ails you), and low-dosage klonopin. I’ve been seizure-free roughly for as long as I’ve been progression-free (I had my seizure on the same day I got the biopsy report — so, I feel fairly confident in saying the very worst day of my life didn’t kill me, but it came uncomfortably close).

Q: What is MGMT methylation, and why is it important?

A: There are a lot of terms out there — like IDH status, Karnofsky score, etc. — that will come with the pathology report (you should get that report tattooed on your forehead; it’ll come in handy when making treatment decisions) that will predict how well you will respond to certain treatments. MGMT is the tumor’s ability to repair itself after surgery and radiation — if it’s methylated, that ability is impaired; if it’s wild-type, it tends to come back fast and angry. I’d bear in mind what Michael Lewis wrote in Moneyball (the book, not the film), paraphrasing Billy Beane, that statistics and probability require a long time (100+ games in the world of baseball) to “shake out” and show themselves, whereas, in the post-game season, something as minor as an umpire looking the wrong way at the right time can give the statistical underdog the series. One of the people on the call has a husband with an unmethylated GBM, and he’s near the five-year mark. Even though biopsy results are important and helpful when making treatment decisions, there is no gene for dumb luck, which is what survival frequently boils down to.

Q: I tried SOC, and it didn’t work; I switched to a lower dosage of Temodar (the standard GBM chemo) daily, and it did; why wasn’t that offered as a starting point?

A: The Stupp Protocol is the SOC standard of giving massive Temodar doses five days out of every 28, and then “resting” for 23 days. There are, however, a lot of variations on it, and “alternative” chemo protocols regarding Temodar dosage and scheduling — see that thing about GBM being dozens of unique diseases. I think SOC is a good place to start, but you (and your oncologists) are going to have to learn a lot more than you think you possibly can to manage this disease; and remember, this isn’t some single, uniform disease, even though oncologists tend to treat it as such. And physicians are not infallible or all-knowing; you want second, third, and fourth opinions (and treatment options) so that the margin for human error is that much more reduced. If you’re new to Planet Cancer, here’s who I would want on the medical team — an oncologist specializing in cancers of whatever organ system you have (neurooncologists for brain tumor patients), a specialist of whatever organ system is affected (I had a neuropsychologist on consult at one point), an appropriate surgeon, an appropriate radiation oncologist, a psychiatrist (if you don’t need psycholgical support at the start of the games, you will before they end) and some sort of general practitioner to coordinate all of your treatment and supportive care. And your goal should not be to find some mythical lotus blossom in the Andean highlands that only long-term survivors know about (if you do find that plant, I want to know about it); it should be to stay alive and healthy enough to make it through the next round of treatment. On the call today, I heard in everyone’s voice a lot of the “cancer blues” that we all run into — that your life isn’t going to be some traipse through paradise as you go from success to success, but just limping from one disaster to the next. That’s a horrible concept to contemplate, to be sure, which is why you only have to live four years. That is the half-life of all medical knowledge. Make it four years, there will be more treatments, better treatments, and science will be that much better-equipped to help you.

Written by

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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