"Girl, inform me, what's immunotherapy?" -The Shins, kind of
A few people expressed an interest in what exactly immunotherapy is. Valid! I had no idea what it was before I started it.
First, I want to talk a little bit about why immunotherapy was chosen for me right now, instead of more surgery, chemo, and/or radiation (the Trifecta of Suck). After they discovered the new cancer on my tongue, I had a CT scan that showed the tumor was larger than they had thought pre-scan, and that the cancer had metastasized to my left lung. If it hadn’t spread to my lung, the next step may have been surgery, but because the cancer came back so fast after the first round of treatment and because it HAD spread, they didn’t recommend it. To be honest, I was relieved. I wasn’t looking forward to more of anything I’d already done. And since I’d already received the most aggressive treatment possible and it hadn’t worked, the next step was to try immunotherapy.
According to my cancer center’s website, immunotherapy is a form of cancer treatment that uses your body’s own disease-fighting immune cells to help your immune system fight cancer. (There is more in depth information on the website, as well, for those inclined to read it.)
The way it was explained to me is that cancer cells are now coursing through my body like little seeds (COOL). The immunotherapy can’t eradicate those seeds, but if the seeds begin to grow anywhere throughout my body (like a tiny beautiful tree that wants to kill me), the drug will activate my immune system to attack those areas. This can lead to some pseudo-progression initially (making it seem as if the cancer is growing), as the immune system ramps up and causes inflammation in any cancer-y areas while they HULK SMASH all the naughty cells. It sounds a little bit like magic. (Just a little bit for now. I will revise this to a lotta bit if it turns out it’s actually working.)
The type of immunotherapy I’m receiving is a drug called Keytruda, or pembrolizumab, that I receive via infusion every three weeks. The goal of the drug is to stabilize the cancer so it doesn’t continue to grow. Receiving the drug is much easier (and shorter!) than receiving chemo, and the side effects are a hell of a lot better than both chemo and radiation.
On immunotherapy days, the first thing I do is go to the lab for blood work. They look at my blood work prior to every infusion to make sure the drug isn’t destroying any of my major organs (which seems like a good idea). They place an IV at this time, so I don’t have to have one placed later when I get to infusion, which is nice because I only get poked one time (provided my veins cooperate). Walking around with the IV in my arm for hours isn’t the most comfortable thing in the world, but they wrap everything up nicely so it’s really not so bad. (And honestly? After everything else, it’s nothing.)
I then meet with the doctor and we talk about any side effects I might be having (which, so far, have remained pretty steady...an itchy rash on my hands and arms, restless legs, and pain around the tumor site on my tongue). While I’ve leveled out emotionally for the most part (I cried at my first follow up appointment because I was still reeling from the news, and again at the second because I hadn’t been sleeping for...I don’t know how long), I appreciate that they also always check in on my mental status.
Once I’ve passed my blood work and mental stability tests, I go to Short Term Infusion, which is where I receive the drug. I get a private(ish) room, where Joe can hang out with me. The rooms aren’t as nice as the chemo rooms, but given that I’m not there as long AND don’t feel like dying after, I’ll take it.
Someone comes in and takes my vitals, and asks us the first of many times if we need anything, then the nurse comes in to talk to me about the drug, see how I'm feeling, and make sure I understand everything. After they’ve checked all the boxes, they finally order the drug from the pharmacy. This is the longest waiting period and, the first few times, it was super annoying because we were just sitting around, which we’d already done a bunch of, and we wondered why they didn’t order the drug before we got there.
Then I got the Explanation of Benefits after my first infusion and I saw how much the drug costs, and my guess is they don’t order it until they know for sure you’re OK to get it, because HOLY HELL otherwise they’re throwing $25,000 down the drain (yes, you read that number right, and thank god for insurance).
Once the drug arrives, the nurse hooks everything up, while wearing a special gown and gloves. Before starting the infusion, he or she has to call in another person to read off my name, patient number, and drug information a couple of times so they know for sure I’m getting what I’m supposed to because I guess it’d be bad to inject this into someone not expecting it. (Or that is how superheroes are made...who knows.)
Then they start pumping the drug. This is the easiest part, really. It takes about 30 minutes and I use that time to nap, read, play on my phone, or, like last time, watch part of Mean Girls. Once the drug is finished, they remove the IV, make sure I feel OK, and send me on my way. It’s all quick and relatively painless.
I’m usually pretty tired afterward, which can be a result of the drug, but I also think it’s just a result of spending half the day at the cancer center being shuttled from procedure to procedure. If that’s the case, I fully expect to be a zombie after my appointment next week because it’s The Big One. I’m scheduled for all the regular stuff, but I’m also getting a CT scan so they can see if the immunotherapy is working NO PRESSURE THIS IS HAVING ABSOLUTELY NO AFFECT ON MY MENTAL STATUS WHATSOEVER.
Anyway, fingers crossed that all this magical science-y stuff is working, so this drug can continue to roundhouse kick my cancer right in the face.
Want to receive updates via email? Please click here to subscribe.