Treatment, Finally
Friends,
I'm writing because I started a cancer treatment a couple weeks ago and want to share the news. I’ve been pursuing this treatment since May 2020, and in October’s post I mentioned a bit about it. This post shares the facts and answers the many questions I had leading into this, which you may have too.
What is the treatment?
I take it as an oral tablet every day; just a few tiny tablets. It's a gene inhibitor. It finds cancer cells with a specific genetic mutation and stops them from reproducing. The drug handily gets past the blood-brain barrier (BBB), which many drugs can’t do. Our BBBs are excellent at keeping out non-essential stuff and passing through only what we need, like water, glucose and the most essential: caffeine.
I'd explain the drug and BBB further, but I swerved out of the way when organic chemistry showed up on the college road map.
How long will I take it?
Until I want to stop taking it, or until the trial ends. This trial could last for years.
Are there side effects?
Of course the trial paperwork lists every side effect under the sun, but this is a mild drug. Compared to the chemo and radiation options I have available to me, and other therapies you may be familiar with, this is placid-- hardly comparable. I place it in its own category-- "Brain Control."
Will I know if it's working?
I'll do an MRI every three months. If there's a decrease in my tumor's growth rate, or even a reversal, that would imply that it's working!
Sorry, you said it's growing?
Yes. Slowly, but it's been growing-- that's what it does. The surgeries bought me plenty of time and space. It was an expensive purchase, but worth it.
What if it doesn't work?
If the tumor continues to grow or I begin having unbearable symptoms, I can unenroll whenever. I still have the chemo & radiation options available and can do those anytime after stopping the trial.
When I stop, I'll be unblinded and learn if I took the active drug or a placebo. If I was taking the placebo, I may have the option to switch to the active drug. This is called "crossing over."
So there’s a chance that I’m not taking the real thing?
Yes, there's a 50% chance that I’m receiving the placebo-- this is a common practice in clinical trials and neither my doctor nor the drug company know which of the two I take. These controls are in place to eliminate “confirmation bias,” which is the tendency for researchers to find results that they wish to see. Blinding the participants and the researchers plus randomly assigning a placebo group eliminates this bias.
I hope I have the active drug, and I'm working on being at peace with the chance of the placebo. The 50% chance is the price of having access to this desirable treatment option.
What was the admission process like?
It was similar to most other academic admission processes. I submitted my cancer resume and credentials through my Oncologist. Then I went to cancer tryouts and had the most extensive physical, cognitive and neurological exam of my life. I waited patiently for the admissions folks to make up their mind, and then prepared for my first day. Unlike college admissions, I didn't get a glossy welcome packet or a free sweatshirt when I was admitted...which sounds fun, doesn’t it...
Maybe I'll start producing "Clinical Trial College," merchandise as a side hustle.
The mascot: The Blind Scientists.
Reviews: The professors don't know who you are, and the students aren't sure if they're actually receiving an education or just four years of misinformation. Tuition is free.
What else do I have to do?
To start, I go for tests, and blood draws every 15 days. After the first few cycles, that eases to every 28 days for the balance of the trial. Why 28 days? No clue. Maybe they only want to see me when the moon is a waning gibbous.
How do I feel?
Many ways. Physically, I feel fine. I’m able to carry on with cycling, hiking, working, etc. The drug has promising implications, and beginning the trial relieves many months of waiting.
At the same time, drawing so much attention to my cancer, and the stress of the process is challenging. I promise some reflective words on this experience soon.
How can you help?
I'm vaccinated and hope to ACTUALLY see you soon. Let’s plan a coffee chat, a bike ride, a camping trip-- I’d enjoy it all.
Thanks for being here,
CB
