I then walked over to the clinic for my labs and meeting with Lindsey, the PA who works with Dr. Maughan. She said that he was leading rotations at the hospital and wouldn't be able to make it. We discussed my side effects, and how my rashes and GI issues had been holding steady for the past month. I told her that in March 2020 it will have been two years since I resumed taking Opdivo. I reminded her that I'd been on the drug from February 2015 to December 2017, then had a 15 month break. I knew that a building consensus for duration of nivolumab therapy was two years, but that my case was different -- I'd been on the drug for nearly two years, gone off therapy, had metastatic tumors return, then went back on therapy. We agreed that there were likely very few if any other patients who matched my profile. We discussed the risks of staying on therapy -- the chances of a serious autoimmune disorder increase the longer a patient is on checkpoint inhibitors. The fact that my skin rashes were getting somewhat more pronounced, and that my bowels are consistently looser, could be signals that my T cells are getting more eager to react to cells other than cancer cells. I asked her to start the conversation of how long I should be getting nivoumab, I also sent Dr. Maughan an email:
Today with Lindsey I raised the question of how long I should stay on nivolumab therapy. It will be two years in March. My first regimen under Noah lasted 22 months. I was off therapy for 15 months before the tumors reappeared. I’d appreciate if if in the next couple of months you would give some thought to the question, perhaps discussing it with Noah, Andrea Apolo, and your HCI group. I doubt that there will be a clear empirical answer, but rather it likely will be a judgment call. I’d be interested to see if there is a collective consensus.I walked over to the infusion lab and watched the inversion build over the Salt Lake valley before I fell asleep as nivolumab was pumped into my body. I finished infusion #68, then met my brother for lunch.
On the way up to Huntsville, I visited Jennifer at the memory care facility. My Florida trip was the longest we'd been apart since she started displaying symptoms of early onset dementia. I had talked with her by phone daily but was looking forward to seeing her in person. While we visited, I realized that she had lost the ability to keep track of the passage of days. She did not realize that I had been gone for a week. It was a sobering reminder of how time is a mortal construct.
This morning I received an email notice that my CT results had been posted to MyChart. The radiologist found no changes from my September scans, and no evidence of disease. I was quietly gratified at my clear scans, and once again grateful to the researchers who spent so much time developing this drug.
