And I don’t mean that in a good way.
About two months before “the day” we were at our Massachusetts apartment, it was evening and I was on the couch with Mister watching tv when I got a text alert on my phone. It was from my son, Casey. Just a simple question really but the kind of question that triggers a mom straight into panic mode, fixer mode as I’ve come to know it. Maybe not just moms but I know that all moms out there definitely get what I’m talking about. It was the kind of text that you find yourself on your feet before you even finish reading it, before you’re even aware that you’re on your feet pacing the room. It was the kind of text that gets an immediate call back instead of a text reply. All it said was “what do you know about glioblastoma?” Now keep in mind this was before our worst day, before the carpal tunnel surgery even, when we still thought we had so much time.
Of course my first question was “are you okay?” followed by “where is this coming from?” He then proceeded to tell me the story of someone else’s worst day, the day that his girlfriend Alaina’s Uncle Gary had been diagnosed with a glioblastoma. I remember feeling so sad for them because I knew what it meant. I knew that family would never be the same. I also knew it was going to happen fast. Little did I know at the time how soon our world’s would intersect. In just the course of two months my son and his SO would have a step dad and an uncle both diagnosed with literally the worst type of brain tumor. What are the odds, right? I mean, one of the first things you usually hear about glioblastoma is how rare it is. I’m here to tell you that of all the things I’ve learned about glios, more than I ever wanted to know in fact, that this is simply not true. The least scientific reason is that almost every single person that I know or have spoken with about this “rare” cancer knew someone else who has had one; friend, relative, coworker, someone.
So now we can get into some numbers, statistics about brain tumors in general and more specifically about glioblastoma. I think most of this will probably surprise you. There are currently over 700,000 people living in the United Staes alone right now with some type of brain tumor. In 2020 over 84,000 new brain tumors were diagnosed with approximately 13,000 of those being glioblastomas. New England has some of the highest rates of glios in the country.
No one knows what causes them and, quite frankly, no one has any idea what to do with them. Primary treatment is generally surgical resection followed by chemo and radiation. Not every patient qualifies for surgery depending on the size and location of the tumor. The way that our neurosurgeon explained the surgery was resection not removal, there’s no way to actually remove 100% of the disease. You remove what you can while trying to spare as much healthy brain tissue as possible and then hope that radiation and chemo will slow any regrowth. And actually not all patients qualify for the standard chemotherapy drug, Temodar. About half of all glioblastomas have tumor markers that have been shown to be unresponsive to this standard chemo. Guess which one we got? Sucker punch after sucker punch. They’ll “let” you take the chemo drug anyway if you want. So you do, at least in the beginning anyway. Until it fails and you’re left choosing a trial drug.
There are currently only five drugs FDA approved for use with glioblastoma patients. This number and the drugs themselves have not changed in the past 30 years. Let that sink in for a minute….. Actually lets just say it again. The drugs to treat glioblastoma have not changed in 30 years. Which wouldn’t be such a big deal, I suppose, if the drugs actually worked.
Glios pose two distinctly difficult problems to treat. The first is the whole blood brain barrier situation. Basically the blood brain barrier functions as this pretty cool protection system to keep things from reaching your brain like bacteria or infections that could be circulating through your bloodstream. Awesome, except for the fact that it also keeps chemo drugs from getting through to fight the growth of these monsters. The other major problem is that no one lives long enough to really get a good chance to study these things. A few unicorns do, but not enough to really have a valid scientific study. Which is why when you’re presented with your options of studies to enroll in, almost every single one is a phase one trial meaning that its new and a complete gamble. I’ve got a whole segment on the studies for you all at some point, from the magnetic hat to the live polio virus infusion straight on through to a whole parade of drugs.
In my opinion the “rare” title comes more from the lack of progress than it does from the actual rarity of the disease itself. It makes it easier to focus on other types of cancers which have become easier to treat and have had improved prognoses while glioblastomas take a backseat. It reminded me of when my son was in elementary school and they were getting ready for standardized testing. Kids that either marginally passed the practice tests or had almost passed were being kept after school to work on their testing skills and areas they needed improvement on to pass. Kids that were nowhere near passing, those kids didn’t get help. Why? Well, it was explained that they couldn’t provide enough help to get them to passing scores before the test date. See where I’m going with this. Let’s focus on the ones we can improve on quickly and maybe no-one will notice the rest, the ones left behind.
So two men, almost the exact same age, both husbands, fathers, grandfathers, living just a few miles away from each other are diagnosed 2 months apart. Both with glios but in different lobes of the brain affecting them in different ways, different treatments, different research studies, both living almost exactly the same amount of time after initial diagnosis. While I don’t think it’s very common for two people to end up with two glios on either side of their families at the same time I think that my son and daughter in law, caught in the intersection of the world’s most fucked up Venn diagram , are living proof that glioblastomas are not that rare at all and this being such a small world is not always such a great thing.