I'm planning to suspend nivolumab in June; Infusion #70

In the past several weeks, my oncologist Dr. Maughan and I exchanged the following emails:

Me to Dr. Maughan, 12/20/19

Sorry I missed you [at clinic today]. 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 [Hahn] 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.

Dr. Maughan to me, 1/8/20

I too have been thinking about that issue (ie. Duration of n-th treatment with nivolumab). I typically think of 2 years as reasonable based on the results of prior studies. Planning to hear what they think at NIH and JHU. Will keep you updated.

Dr. Maughan to me, 1/27/20

I recently heard back from Noah and Andrea about the duration of nivolumab. Both agree that not much data on this topic—well not great data anyhow. Both typically follow a 1 year strategy, meaning discontinuing nivolumab 1 year after observing a complete response. As discussed in clinic, since there is no great data I can be supportive of many options here. However, I also recommend stopping nivolumab after 1 year. Let me know your thoughts on how you wish to proceed. 

Me to Dr. Maughan, 1/29/20

Thank you. With the consensus being to suspend therapy, I’m ok with that decision. The next question is timing - I’m not sure when to start measuring my last CR - would it be after my radiation treatment in June 2019, or the NED scan in September 2019, or another date? And once on surveillance, I’d continue with CT scans every 12 weeks, right?

Dr. Maughan to me, 1/29/20 

No great answer regarding the timing of when to start calculating the time from. The general consensus is starting from completion of radiation therapy though, which is also my recommendation. You are correct regarding the surveillance. I suggest repeat scans and clinic visits every 12 weeks.

Me to Dr. Maughan, 1/30/20

Ok, I’ll plan to continue monotherapy through June 2020, then switch to surveillance barring any adverse developments. 

*** 

Today was my first infusion after completing this email exchange. This morning was a bluebird day, so I drove up to Snowbasin and went skiing for three hours. The parking lot of the ski area is only a three mile detour from my drive from home to Huntsman's Farmington campus, so it was an easy decision. The snow was wonderful - there's been more than 280 inches so far this season - and the groomers were nice. I started on the Strawberry gondola and followed the sun, ending with a ride on the John Paul lift and a run down the Grizzly Olympic downhill. A recent New York Times article gave glowing reviews to Snowbasin and another local resort, Powder Mountain, so the secret is out. 

I checked into HCI, then realized that I was still wearing my base layer thermals and a long sleeve quick dry shirt, which would make it difficult to access my arm for blood draws and my infusion. I shed my thermal top and rolled up the sleeve of my quick dry short, and the nurse got my vein with the first stick. I got my labs drawn, then met with Lindsey, the PA who assists Dr. Maughan. She said that my labs were perfect - "the best I've seen all day" - and said that she'd read in my charts about my emails with Dr. Maughan and the decision to suspend my nivolumab infusions through June. Last week I saw Dr. Apolo at the 2020 ASCO conference, and she reiterated her agreement with going on surveillance this summer. 

So why suspend my treatments, you ask? Didn't I already try that back in December 2016, after 22 months of nivolumab, only to have metastatic tumors reappear only 15 months later? Yes, all true. But the concern is that the longer I stay on nivolumab, the greater risk I have to trigger and autoimmune disorder. I've been gradually seeing an increase in skin rashes and looser bowel movements - both indicators that my T cells are getting more twitchy and willing to attack normal tissue. I currently have no detectable disease (not the same thing as being cured - that's an entirely different kettle of fish). And since my cancer seems to be responsive to nivolumab, if and when my disease returns, I'd likely try it again. 

And if nivolumab doesn't work, there are other therapies that are being developed. One of the more exciting announcements coming out of ASCO was that a new combination therapy of pembrolizumab and enfortumab vedotin-ejfv (Padcev). The recent press release said that an astonishing 93% of patients with metastatic bladder cancer in a phase 1 clinical trial had tumor shrinkage, with a significant percentage having durable complete responses. This is an amazingly promising result, better than any other therapy for mets BC, including single drug immunotherapy. P+EV will now be tested in a phase 3 clinical trial. Hopefully it proves to be as good as indicated. 

While I was getting my infusion, Dr. Maughan came over to chat. We had missed seeing each other at ASCO, so I got his thoughts on the updates. Like me, he was impressed with the promise of P+EV, but wanted to see it hold up in the phase 3 trial. I also told him that NIH was flying me to DC at the end of March for a conference of patient advocates, and asked him to think about how Huntsman could better implement patient advocates in both its research and clinical settings. I also said that I was working on scheduling the SLC BCAN walk for May 30. I'll post more about the walk next month.