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Life in a Clinical Trial: The Worm's Eye View

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Now that I've versed you a bit on the big picture, it's time to share clinical trial life in the form of the little picture: that is, moi. Immunotherapies work differently than chemotherapies. The latter just doses you with toxic chemicals that have been shown to do a reasonably good job at killing cancer cells without killing so many healthy cells that it, well, kills you. The former helps your immune system to do its job better. For instance, the durvalumab that I take is a PD-L1 inhibitor. My understanding (and anyone who is qualified to correct me or add additional info, please do!) is that this drug stops the body ("inhibits" it, get it?) from making the kind of protein (PD-L1) that some cancer cells smear all over themselves in order to hide in plain sight. So if my cancer cells were producing a lot of PD-L1 - well, they aren't anymore. And instead, as I mentioned in the last post, the cancer cell is naked and being pointed out and laughed at. The seco

Life in a Clinical Trial: The Bird's Eye View

With the first few months of my clinical trial behind me and the initial scans showing positive news, I'm now in a position to offer meaningful information and perspectives about the trial in which I'm taking part. I also think it might be useful to explain a little bit about the clinical trial process, because a number of loved ones have admitted that they're somewhat confused about what exactly taking part in a trial means. So, let's dive right in!  In order for a prescription medication to be approved for use in the United States, it must undergo rigorous testing and be approved by the US Food and Drug Administration (FDA).  There have been debates recently about whether the FDA's approval process for prescription drugs is too arduous and time-consuming - but personally, I support the extensive data collection and testing process. When you're offered a drug that could be the difference between life and death, you sorta want to know that said drug has bee

First Trial Scan Results, Announced in a Roundabout Way

Let's see...last we chatted, I'd been wide eyed and sleepless, waiting for scan results (and bloodwork, too). Wednesday night was scan night - chest, abdomen, pelvis - and we met with my oncologist on Thursday morning. As usual, he sent in a surrogate first. Usually it was his fellow, but today it was the hematology/oncology fellow. He entered, said hello, we pretended we knew each other, and he sat down at the computer. "So," he said as he accessed my files, "The scans were unremarkable but for these blood clots we're seeing in the portal vein system...let's take a look." Nick and I looked at each other. "Sorry - what?" I said. "Blood clots?" And he opened up one of my scans. "Yes...here we go. Let's take a look."  At this point, I had to interrupt him. "So, wait," I said. "What did you mean by unremarkable scans? There's no new areas of concern? Has there been growth in my lung lesions?" Fin

Thoughts inside an MRI machine

The first thing you need to know is that I'm claustrophobic. It's a fun phobia to have, because it manifests itself in all kinds of weird ways. It's not just that I hate small, enclosed spaces - it's that I can't breathe when I am in them, and thus the fear turns into a panic attack, and a panic attack spirals into a full on respiratory emergency these days, what with my compromised lungs and all. So, you know, I do my best to not jump into coffins or elevators or airplanes and whatever. But sometimes, the small, enclosed spaces come to you, and you have no choice. That would be the MRI machine. I tried to smuggle my phone in to take pictures, but they're really, really strict about what's allowed in the MRI room, because the MRI is basically a GIGANTIC magnet, and so anything with metal or anything affected by magnets aren't allowed in the room. Hell, I'm not even allowed into the super high powered MRI because I have a copper IUD (sorry if tha