Infusion Day 29

 Per a request, here is a description of a typical infusion day (my most recent).

• 9:30am: Measurements taken: weight and vitals (blood pressure, temperature, blood oxygen level)
• 9:45am: IV installed. Blood drawn (15-18 test tubes, but some have preservative solution into which a small amount of blood is added). Then wait for lab results on a few test tubes. The rest are used for research, either locally or sent elsewhere, e.g. to Bristol Myers Squibb.
• 10:00am: Got some breakfast in the cafetaria, and got a salad to eat later for lunch.
• 11: 15am: Lab results came back, and all are within normal ranges (except phosphorus which was a little low), so it's OK to proceed with infusions. The pharmacy will mix/prepares the drug infusions. A research nurse did stop by to talk with me about phosphorus levels. 
• 12: 00pm: The drugs arrive. The first infusion is by IV bag with Nivolumab. Vitals measured every 30 minutes. 
• 1:05pm: Get up and grab a cookie or two.
• 1:15 pm: Second infusion is by IV pump with Lirilumab. Vitals measured every 15 minutes.
• 2: 15pm: Infusions done, stay for 1 additional hour with vitals measured.
• 3:30 pm: IV removed and I'm free to go. The research nurse gave me a list of high phosphorus foods, to try to boost that without needing to resort to supplements.

The first two infusion days (Day 1 and Day 15), I was mostly excited in that I had gotten into a promising clinical trial after 6 weeks of trying. This time (Day 29), during the first infusion, it hit me again that I'm a cancer patient, I'm spending time in treatment, I'm in an infusion room with a lot of other people getting different treatments, I'm having holes poked in me. I'm getting a treatment that, as promising as it may be, gives a disease control/success rate of, say, 40% or slightly less (that is, the Nivolumab half of the combo only). Which is great for melanoma. The results of adding lirilumab into the mix are unknown which is why they're holding trials like the one I'm in.

I also didn't feel good physically around the first infusion starting. Maybe I was low on sugar.



I had left my food in reach though. About halfway through the first infusion, I ate a few cookies and the salad. This perked me up physically. I also started listening to some interviews with a couple of comedians through my headphones -- these got me laughing out loud. I hope this wasn't disruptive or annoying to the other infusees.

People are dressed pretty casually. Sometimes someone brings some food, like some cookies which are a good fit. Everyone there is getting medicine that they hope will improve their condition. A lot of them are getting chemotherapy (poisons the cancer cells but also a lot of the rest of the body). Awhile back I had read a patient's short tale (couple of pages) from the book Chicken Soup for the Soul: The Cancer Book. His tale of his experiences of the infusion room is titled The Room of Hope. That's a good way to put it I think.

This shot is of the hospital viewed from the MAX train on my way back to the airport -- after grabbing a couple of slices of pizza. Next up, assuming all keeps going well, will be Day 43 (last infusion of the first cycle).