I think I'm starting to understand the patterns of post-immunotherapy side effects. I've now gone through six cyles. They're a little harder to decipher (compared to chemo side effects) as they're more subtle, and they could be easily caused by something else. The effects also can be cummulative, so symptoms can increase in intensity over time, after subsequent dosing. My Minneapolis oncologist is pretty chill about all of my "complaints": a few days after the infusion, my mouth and throat feels swollen and sensitive, like when I'd get thrush after chemo. But I'm not actually getting thrush, I'm just having "thrush-y" symptoms. This also feels similar to sucking through a bag of hard candy, which between the sugar and the microscopic cuts from the sharp candies, leaves your mouth feeling a bit beat up.
The cycle before this last one, my sensitive mouth and throat slid right into a full-blown cough/chest cold. I don't think it was caused by the infusion, but it does make it more difficult to figure out where the infusion side effects ended and the pedestrian cold started.
Also a few days after the infusion, my eyeball sockets are sensitive, and if I roll my eyeballs around dramatically making googly eyes, it's uncomfortable.
I report all of this to my Minneapolis oncologist, who has an attitude that if I'm not bleeding from my eyeballs and my limbs are all still attached, I'm fine, get on with my life. Stop making googly eyes.
We have a new side effect that appeared after Tuesday's infusion. Starting about Wednesday night, if I took a deep breath, it felt like I was getting shivved in the gut. The run up to a sneeze or a yawn makes me yelp. When it was still there Thursday, I decided I could rule out gas. We're supposed to be watching for things like abdominal bleeding, so while the pain got steadily worse, it never was unbearable, I held on to my oncologist shrugging and saying she thinks all of these pesky little activations are a sign the drugs are doing something.
Bob kept pushing me to get it checked out, but I can't. I really don't think something terrible is happening in my gut, and thing is, if it turns out that I can't tolerate the treatment, well then, I'm fucked. So it's fine. I'm fine. I'm working, doing all the normal things. None of this is affecting my ability to function fully in the world. I think the gut pain is getting better. I don't do myself favors to aid tracking progress when I do things like eat only donuts and Russian tea cakes for a full day and then try my first microdose of magic mushrooms. Any of those things on their own might make me feel a bit off. Cries for help that sound totally reasonable and enjoyable in the moment...still trying to find the magic combo of non-narcotic things that have the effect of 1/2 a Vicodin. That's all I want, 1/2 a Vicodin a day. Loosens the clenched muscles in my neck, takes the pain away, brings in light euphoria, gives me a little pep. That's what I'm looking for. Experiment #1, a lot of donuts and some shrooms, was not a success. Not without merits, but not what I'm looking for. The quest continues.