Re: The IL-2 infusions being hellish, I can guess why that would be (pain, fever, delirium, and so on), but I'd be interested in a first-hand account from someone like you, who seems to be so able to communicate these experiences. In short, what was the hellish part of it?
You've listed the main side effects of the treatment: pain, fever, and delirium.
About 20-30 minutes after receiving a dose of IL-2 by infusion, my body would undergo violent bed-shaking rigors for 10-20 minutes. I had the worst chills I've ever had, followed by breaking out in a hot sweat when it had passed. This was very unpleasant.
After each successive dose, the effects would worsen.
Essentially, the doctors were trying to take my body to the brink of experiencing a cytokine storm (https://en.wikipedia.org/wiki/Cytokine_storm) to jump-start my immune system.
This was a pretty miserable part of the treatment, but (in the end) obviously worth it.
The research doctors at NIH have been refining treatments with IL-2 for almost two decades for thousands of patients. They've gotten enough experience to recognize and mitigate the issues that may develop.
In my specific case, they weee concerned that I might have a heart issue that was unknown (I don't). For the sake of my own safety, I was given the treatment in ICU. For most patients, this is unneeded.
Actually, my biggest risk was contracting a superbug with my severely weakened immune system. The last NIH patient who died from the superbug was a few rooms away in ICU at the NIH Clinical Center at the same time as me. (I knew the doctors were taking extra precautions with me, but I was totally unaware of was what happening down the hall from me.)
