Apart from the obvious, “I’m halfway done!” sentiment, here’s something good I can say about finishing my first 3 cycles of chemo:
It’s been nearly six months since my diagnosis and I think I’m finally ready to write in a bit more detail about about my cancer (grade IV glioblastoma), my prognosis, and the unorthodox approach I’m taking to fighting this shitty disease. I’m going to get into some details of my treatment in part because this blog now has over 2000 readers, and I suspect some of them might be glioblastoma patients or their families who could benefit from some of this information. This one is long – now is your chance to bail before we get too far into the weeds!
What would you do if…
…you were sitting in a doctor’s office after surgery and the doctor told you, your mom, and your partner that the median survival time for your disease was 12 – 18 months? I can tell you what I did – my heart fell into the pit of my stomach, and I used every ounce of available willpower to keep from breaking into tears as I watched my mom and my wife do just that. Dr. D took great care to explain that those numbers were just statistics, though, and that individuals are not statistics. My logical engineer brain nodded in agreement, but my scared shitless emotional brain curled up into a ball in the corner of a dark room and fixated on the numbers 12 and 18.
For weeks after that meeting, I cried daily. I cried in the shower. I cried in the middle of the night. I cried when I tried to read a note to little R from his kindergarten teacher that he received after his “moving up” ceremony. I cried listening to “Time After Time” alone and with little R. I was a mess. Every milestone was a reminder that it might be the last of its kind.
Trust no one.
I also made a pact with myself that I would categorically reject advice from anyone who was not my physician. Much like when you have kids, when you get cancer, people want to tell you about what “worked” for them or their friends. It’s a gesture of kindness and care, and I appreciate kindness care. But, I also knew I needed a way of paying attention only to what was important, and the only way I could do that was to limit myself to listening to my neuro oncologist, Dr. D.
Then, one day, I got an email from my aunt M. M’s best friend was also recently diagnosed with glioblastoma. M’s email was cautious, and she even openly questioned whether it was appropriate to share what she would ultimately share. What she shared was a link to a documentary called “Surviving Terminal Cancer.”
Watch a documentary?
Against my better judgement, I watched the first five minutes of the film. It was riveting; I watched it from start to finish. The film follows the cases of a few different brain cancer patients, almost all of whom are white male, academics with PhD’s in STEM or STEM-adjacent fields who were diagnosed relatively young. I only mention their demographics because up until this point, I have had no perspective to help me truly, personally understand the power of representation. I know this sounds like a weird thing to say given that I’m a member of the most well-represented, dominant group in our society – straight, CIS, (mostly, I suppose) able-bodied, white males. But, if it hadn’t been for the fact that those stories looked and sounded so much like mine, I might have written off their approach. And, their approach is truly radical.
The film’s main protagonist is a UC San Diego psychology professor named Ben Williams. In 1995 Ben was diagnosed with glioblastoma. Not a man to take his diagnosis lying down, he dug in and did an insane amount of research on the disease. In a short amount of time he came to the conclusion that the way to fight this disease is the same way activists advocated for fighting HIV/AIDS in the 80’s and 90’s – a cocktail of already-approved (for other maladies) drugs with relatively low toxicity and well-known side effect profiles. He battled with his oncologist to get support for his approach, ultimately driving to Mexico to procure prescription medications when he couldn’t get a legal prescription in the US. The man created a cocktail that at times consisted of as many as 30 drugs and supplements.
Crazy, right? Dangerous? Quite possibly. Irresponsible? Perhaps. But here’s the thing – when you’re staring death in the face, who’s to say what’s crazy, dangerous, or irresponsible? I think that privilege belongs to the patient. Wanna know what’s really crazy? Ben Williams is still alive more than 24 years later (and so are several others who’ve followed his lead).
Confronting Dr. D
And so it was with great trepidation that I walked into my next meeting with Dr. D. I did a lot of steeling myself for what I anticipated would be a difficult conversation about taking this radical approach.
The medical system has a lot of built-in incentives for doctors not to deviate from the Standard of Care (SOC) – a “universally” agreed upon, standardized treatment plan for each specific cancer. One of the strongest of those incentives is something that exists at every hospital called “The Tumor Board.” It’s a weekly meeting of all the specialized oncologists at which they present their treatment plans for their patients. Can you imagine the professional risk one runs standing up in front their peers announcing they intend to use a cocktail of off-label drugs (even in addition to the SOC) to treat glioblastoma when the whole community has agreed that the protocol is 1) surgery, 2) chemo + radiation, and 3) six months of full-dose chemo? I can’t. But, I’m pretty sure it takes intestinal fortitude I’d be hard-pressed to muster, myself.
More Tears (nearly)
When the time came to propose the cocktail approach to Dr. D (who is also a research scientist), he said “This is absolutely the way to fight this disease. The reason I can say this is that I also study these cells in the lab, so I know how they act and respond.” I damned near broke down in tears when I heard that. It turns out that we are exceptionally lucky – Dr. D might be the only neuro oncologist at MGH willing to prescribe an off-label cocktail. He even joked that at the tumor board meetings his peers say, “There goes Dr. D, the guy who treats glioblastoma patients with CUSP9” (mocking tone implied). CUSP9 is an experimental, 9-drug cocktail protocol, and the acronym stands for “Coordinated Undermining of Survival Pathways.”
My Current Prescription Regimen
As you know, I’ve got three more chemo rounds before I finish (hopefully for good). But, over the last couple months, in addition to the ketogenic diet, I’ve added off-label drugs, many of which enhance the effectiveness of the chemo. All of them target different tumor growth-enabling/enhancing pathways. Celecoxib sensitizes tumor cells to the chemotherapy drug (TMZ). Captopril inhibits the growth of new blood vessels (necessary for tumor growth). Sertraline promotes the action of an anti-tumor protein known as p53. I’ve added a couple others by my own request. Metformin enhances the action of the TMZ and decreases tumor invasiveness. Valganciclovir is an antiviral that targets cytomegalovirus (CMV) which has been detected in glioblastoma tumor cells.
The Role of Supplements
In addition to prescription medications, I take a few supplements which are also suspected to have anti-cancer properties. Curcumin is supposed to suppress certain oncogenic (tumor-promoting) proteins. Gamma-linolenic acid (borage seed oil) is believed to induce apoptosis (programmed cell death) in tumor cells and enhance the action of certain anti-tumor proteins. And, melatonin supposedly decreases glioblastoma stem-like cells that increase the chances of mutation and recurrence.
The Challenges of a Drug Cocktail
The biggest challenge is untangling and properly attributing negative side effects, especially in combination with chemotherapy and the ketogenic diet. Some days it’s clear. For example, if I change posture too quickly (eg. stand up from sitting) I get extremely dizzy. Thanks, captopril! But, that post-meal upset stomach? Who knows? Could be chemo; could be metformin; could be the damned multi-vitamin.
The second biggest challenge is finding pill organizers large enough to fit all these medications. The third biggest challenge is swallowing all of them. I swallow in two batches each morning and night, but I foresee that increasing.
Seriously, though, we’re being smart and conservative about adding drugs. We only add a single compound a week or two at a time, but there’s still a lot in the mix (so to speak). I suspect once we arrive at the full cocktail, my body will adjust and I’ll know better what to expect.
Until then, I’m keeping my seatbelt fastened on this wild ride!