I went to my usual cancer survivor support group this morning; and, due to some immediate personal emergencies the nurses/social workers who usually run the show weren’t available, so we just ran the support group ourselves. This is absolutely true; and I think there’s an excellent takeaway lesson for everyone: you shouldn’t need some sort of official or institutional blessing or guidelines to support people. They’re helpful, but they shouldn’t be the impetus to help each other. Just randomly pay someone’s rent (if we’re in a medical crisis, financial crises are soon to follow), show up with a pizza, or just show up.
Having said that, a fair amount of the meeting was just us panicking about what to do in case of coronavirus infection. Which leads me to my first question, which I’m asking you, the readership:
How long after chemoradiation is someone considered immunocompromised?
I’m actually asking for myself. During treatment, for legal reasons, I was always treated as if I was immunocompromised, even though my weekly blood cell counts never dropped (I’m fairly certain they didn’t, because the nurses chased me down and chewed me out after I had low potassium levels for two blood draws).
The only other noteworthy thing was a newly-diagnosed survivor (I use that term loosely, because most of us — including this survivor — have been skirting the Big C for a while, under a variety of circumstances) who was feeling the fight drain out of her. Which is something everyone in the group immediately related to in a way healthy people — no matter how empathetic and understanding — simply can’t. Until you’ve actually felt your nerve endings being chemically seared, you don’t understand the sort of debilitating physical pain we endure just to be daisy-side of the dirt. And there’s really not a whole lot I can advise on that one; if life is worth living, pursue that goal with everything you’ve got. And don’t treat cancer, or pain, as if they’re some massive, uniform, crushing problem, just start chipping away at smaller, more-solveable stuff. Figure out a way to deal with constipation and sleep issues. Figure out a way to maintain something like a healthy weight. Start solving a few of the simpler, more-obvious issues that you can easily solve, and some of the bigger ones will fall into line.
Moving on, I spotted this question on a board this morning, and thought it deserved a little attention:
Why do some [glioblastoma survivors] last 3–10 years, and some live 6–15 months?
At this point, I feel uniquely well-qualified to answer this particular question. As of March 1, I reached 25 months at No Evidence of Disease. Which is amazing, both from the, “Hey, I get to be alive” aspect, and just in terms of statistics. I have been NED now for longer than a newly-diagnosed survivor is expected to live. However, I do have to stress that even though I might have a little bit more insight than is generally available, I don’t have all the answers, and I think there probably as many ways to survive cancer as there are cancer survivors.
First of all, glioblastoma is not one single, monolithic disease, but dozens — possibly hundreds — of different sub-types, each with a unique prognosis and response to various treatments. However, most oncologists I’ve heard of treat this as a single disease. Imagine if you came back from a trip to Cambodia and came down with various aches, pains, had trouble breathing; and your doctor told you that you had “Jungle Syndrome,” and was vague when you asked for more specifics, and wrote you a prescription. This is the world of glioblastoma patients — we get a terrifying diagnosis, there is not much information available — and then we get to choose between treatments that may or may not have great evidence to support them. And, it is worth noting that the most-current statistics are five years old. The half-life of medical knowledge is roughly four years. Imagine if you were doing research on cars, and the only data available to you was from before 1960 (around the time when most modern safety features started being added to them). You’d be forced to conclude that automobiles were deathtraps that were unsafe. These are the stats most oncologists and survivors have to work with. You do have to start carefully wending your way through individual stories and strategies to figure out what’s happening on Planet Cancer — and that’s all cancers, I think, not just GBM.
So, there are a million tiny little genetic factors in play. I’d advise everyone to get a copy of their biopsy report, get it tattooed to their forehead, and get the pathologist to explain what every single term means. Some will be good, some will be bad, some will just be data that might be useful at a later date, I infrequently get lists of genetic mutations from other GBM survivors that I’ve never heard of. And, like everything else, keep in mind that if something as simple as a list of mutations were comprehensively predictive, we’d live in a Gattaca-like world. Your biopsy report, and other factors — are you young, were you healthy prior to your diagnosis, do you have any other chronic conditions, etc. — are certainly predictors of what may or may not happen to you, but no one really can say until you start treatment.
Which brings up a rather critical finding, on my part. Very few GBM patients finish treatment. As I’ve pointed out, I’ve heard of less than a half-dozen of us who have done it. That shouldn’t be seen as some sort of moral judgment; a lot of us have “adverse” reactions. “Adverse” on Planet Cancer means, “Treatment will kill you long before the disease does.” Obviously, under those conditions, discontinuing treatment is advisable. Which is the dry, medical terminology for saying, “For the love of God, man, stop the chemo before it kills you!” With that in mind, it is worth noting that drug-seeking behavior in GBM patients, in my experience, is strongly linked to survival. I don’t mean anything as prosaic as opiates; I mean that the most successful (in this case, longest-lived) GBM patients will, if one treatment doesn’t work, actively seek out other treatments. That can come in a wide variety of forms; I know some folks who go on and off various chemo protocols and/or take mind-bending amounts of Rick Simpson Oil; I know one woman who had an altered herpesvirus injected into her tumor site; I know one woman who just gets surgery and radiation at terrifyingly regular intervals; the critical factor is not giving up on treatment — some form of treatment, whatever that might be.