A few people privately shared this article with me out of concern, so I wanted to say a few words about it.
Dr. Ani said, at this point, I’ve had almost all the non-life-threatening side effects of immunotherapy. My immune system isn’t just active–it’s on overdrive. We’ll see what Monday’s scans show, but the previous scans certainly implied I’m in the “immune system so active, the cancer melted away” category.
That doesn’t come without risk and cost. We lowered the dose of the second agent once and may have to do it again. I skipped the last treatment and may have to skip treatment again on Wednesday. I’m back on steroids and may continue on a low dose permanently to try to calm down the worst auto-immune effects. I’ve been in the clinic every week (instead of every two weeks) for continued blood tests and monitoring.
I’m lucky enough to be at a major research center–The Angeles Clinic has participated in immunotherapy trials for years. Unlike many of the smaller centers mentioned in the NY Times article, they’re familiar with some of the more rare side effects. Dr. Ani’s proactive, cautious, and walking down that risky line right along with me. At the same time, when I feel like I shouldn’t complain about side effects because the treatments are saving my life, she immediately says, “That’s not enough. You need to feel good too.”
I feel grateful for the extra time I’ve been given. I’ll continue to be optimistic and cautious and vigilant. Whatever tomorrow holds, I’ve had yesterday and today–and those by themselves are unexpected gifts.
