DECEMBER 19, 2022 – Today I met with my oncologist, Dr. Kolla, the saint who’d called me on December 29 last year—five days before my first appointment with him. His outreach had impressed me. When we met in person, I was even more impressed—and assured.
At today’s appointment, Dr. Kolla started off by telling us (Beth accompanied me) about his recent ski outing. He fell four times and each time thought of me—hoping that I wasn’t falling too, given the state of my bones still recovering from the attack by multiple myeloma cells prior to my treatment. I assured him I wasn’t taking undue risk. What I didn’t say was that the “undue risk” strategy means skiing in a tuck, the backside of the “Eiger” in “Little Switzerland.” The tuck ensures a lower center of gravity, reducing the fall risk.
The rest of the appointment went well. He said the myeloma cells, smacked down to 0.2% by the transplant business (a year ago, before any treatment, the rogue cells were circulating in large, destructive gangs), had dropped since then to 0.1%. Dr. Kolla expects that percentage to fall even lower.
Coincidentally, yesterday a family friend in New York had called with an instructive story about a clinical study. She’d agreed to participate in a study like mine in that it was designed to measure the efficacy of a combination of drugs, each of which had already been approved. As happened to me in my study (see my 12/16 post), the friend had wound up in the control group. Upon learning this, she told her oncologist that since the drug she wouldn’t be getting showed apparent promise, she wanted its potential benefit. The oncologist agreed—all in the interest of optimizing our friend’s prospects.
I told this anecdote to my other “New York friend,” James (see my 12/13 post), and added, “Since I have an appointment with my oncologist tomorrow, I’ll mention this and see what he thinks.”
James, being the loyal friend he is, put his foot down. “You’ve got to be more forceful than the way you just put it,” he said. “You’ve got to advocate for yourself. You’re being way too Minnesota about it. Use a New York attitude, just like the friend who urged you to go in there and stand up for yourself.”
“She’s originally from Minnesota,” I said.
“Maybe,” said James, “but she’s a New Yorker now!” He laughed, and I joined in.
At today’s appointment I introduced the subject by telling Dr. Kolla, “I’m being urged by a couple of New York friends with New York attitudes . . .” We laughed.
A thorough conversation ensued about going off the study and taking both the Revlomid (which I’ll be taking anyway as the current standard of care) and the other medication—Deratumumab—that members of the control group are not getting. I asked questions that I thought would help me understand the spectrum of choices and weigh probable risks and benefits. Dr. Kolla was superb at fielding these and providing guidance. If last night’s dreams about all this reflected anxiety, after today’s real-life discussion, I can sleep assured. I’ll stay in the study and on the basis of frequent labs, defer the Deratumumab until a later date and only if it’s recommended.
He also noted the number of alternative drugs being developed, the most recent one being Talquetamab, which was the subject of the latest segment of Science Friday on NPR.
In advance of the extreme cold predicted, I skied hard later this afternoon—in a gentle-falling snow and comfortable temps—low teens, Fahrenheit. In the fading light, I schussed the backside of the Eiger—four times, nose close to the ground—filled with continuing gratitude that a doctor from India decided to become an American; better yet, a Minnesotan—and now a skier, at that.
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© 2022 by Eric Nilsson
