Infusion 49: now on 4 week schedule

Earlier this year Bristol-Myers Squibb obtained FDA approval to have nivolumab administered every four weeks, instead of every two weeks. After Dr. Hahn told me that he was dosing virtually all of his patients on a 4 week schedule, I asked my Kaiser doctor whether I could shift to that schedule. She agreed, so today I have my first 4 week dose (a Q4W (480 mg) flat dose). An added benefit is that this Opdivo dose can be administered in 30 minutes instead of an hour, making my infusions not only less frequent but faster. The only downside is that my infusion nap isn't as long. 

Four week intervals also means that scheduling my infusions becomes much simpler, especially because I'm going back and forth between DC and Utah. I fly to Utah on July 2, and will come back with Garrett on July 22. His homecoming will be on July 22 (Scott's Run building at 1 pm, y'all come). I'll have infusion #50 later that week. Then we'll go back to Utah for three more weeks. The week of August 12, we'll return to DC. On Saturday, August 18, I'll drive Garrett up to Pittsburgh so he can move into his dorm at Carnegie Mellon. My baby's going to college! Then I'll have infusion #51 the following week, along with my very last follow-up with Johns Hopkins. Whether I transfer my care to Utah may depend on whether my mets are responding to this treatment. If not, I'll likely pursue clinical trials in the DC area. But I'll worry about that later. I'm simply grateful for each day.

A four-week schedule also means that my blog posts likely will be less frequent, as I try to post when something happens related to my cancer. If you're looking for something else to read, I recommend the following:

Circe by Madeline Miller
Educated by Tara Westover
The Broken Earth trilogy by NK Jamison
Book 1: The Fifth Season
Book 2: The Obelisk Gate
Book 3: The Stone Sky
Station Eleven, by Emily St. John Mandel
American War, by El Akkad
The Handmaid’s Tale, by Margaret Atwood
The Sparrow, by  Mary Doria Russell
Children of God, also bt MD Russell
Fourth of July Creek, by Smith Henderson
The Dispossessed, by Ursila Le Guiun

Infusion 48; CT scan showns stable disease

On Thursday, June 14, I had my labs done in advance of my next Opdivo infusion. My labs were unexceptional, with the exception of continued increases in my liver enzymes (alanine aminotransferase, or ALT, 84 U/L, and aspartate aminotransferase, or AST, 56 U/L). Both have been creeping upward as my new tumor has grown. The levels are not so high as to cause immediate concern, but it’s something to watch, like an inexorably rising river during high rains. My prior CT scans have shown small nodules in my liver, nothing large enough to be definitive, but something to be aware of. If I had to bet, I’d guess that my liver will be the first organ that will have metastatic activity. I’ll cross that bridge when I come to it.

On Friday (June 15) I had nivolumab infusion #48 at the Kaiser Tysons Corner office. It was the third since I’ve resumed my treatments with Opdivo, and was so routine that I fell asleep. The nurse reported that I was snoring. Clearly I’m not drinking enough Diet Coke.

On Monday (June 18) I had another CT scan. There were 20 people in the waiting room and I resigned myself for a long wait, but the advantage of being a frequent scanner is priority boarding. I was quickly called in by the tech who remembered me due to my generous tips and was rewarded with only one blown vein. Maybe 15% of nothing is not enough? As usual, after the scan I was told to drink lots of fluids to flush out the barium and iodine. As usual, I went to McDonalds for two sausage and egg McMuffins and four liters of Diet Coke. And as usual, Kaiser had the CD of my scans ready after my visit to the Golden Arches.

Today (June 19) I received the results of yesterday’s scans. The headline is that the primary tumor in my neck has not grown in size. Stable disease is better than active growth. The scan actually measured the tumor to be slightly smaller, but that is most likely due to how the tumor was sliced by the scanner. Here’s the relevant text from the neck scan:

“The previous enlarged left level 3/4 junction lymph node somewhat more difficult to see because of beam hardening artifact from adjacent contrast bolus but appears to measure about 1.4 x 1 cm which is borderline enlarged, though smaller than the previous size of 1.7 x 1.4 cm. Otherwise no enlarged or pathologic-appearing lymph nodes are seen throughout the neck.”

For my chest, abdomen, and pelvis there was “no significant lymphadenopathy or evidence of metastatic disease.” So yay for no tumor growth.

Later in the day, I went to Johns Hopkins for my last visit in connection with my participation in the Bristol-Myers Squibb-sponsored clinical trial that led to the FDA approval of Opdivo for metastatic bladder cancer. Because of the FDA’s approval last year, I can get nivolumab from any oncologist without my being in a clinical trial. I expressed my deep appreciation to Dr. Noah Hahn, and to senior clinical trial nurse Brad Wilt, and to the entire Hopkins staff, for their profession, compassionate, and persistent work at prolonging my life.

I also discussed with Dr. Hahn his recommendations going forward. He said that I should probably continue with nivolumab until either all my tumors were gone, or they were actively growing. In the even that my tumors continue to grow, Dr. Hahn said that there were lots of new therapies being tested on patients who had disease progression following immunotherapy. He mentioned a number of them – some of which I’ve previously blogged about – and invited me to reach out to him to discuss if and when that time came. He also encouraged me to keep up with my blog, saying how many of his patients had mentioned to him how they were readers of my blog. More than a few had sought him out based upon my good experiences with him and Hopkins.  

Dr. Hahn knew that I was planning on moving to Utah at some point, and said that one of his fellows,Dr. Ben Maughan, now practices with the HuntsmanCancer Center in Utah. Dr. Maughan likely will become my new oncologist when I eventually transfer my care out there. 

Life, meanwhile, has taken an unexpected turn with my wife’s unexpected diagnosis of early onset dementia. Jennifer’s cognitive decline became pronounced last October, and for the past nine months we have struggled to determine the problem. Four hospitals, 11 doctors, and 13 different drug regimens later, she continues to suffer from daily confusion, uncertainty, disorientation, and wandering. This disease is horrible for anyone, but seems especially cruel to strike my faithful wife at age 54. After her last hospitalization, the doctors recommended that she be transferred to an assisted living facility that specializes in memory care. She’s currently residing at a memory care center in Northern Virginia. After consultations with doctors and family, we’ve made the decision to relocate Jennifer to another memory care facility in Northern Utah on July 2. There she will be closer to our oldest daughter, a practicing physician, and her extended family.

This decision was informed by the very real risk that my disease will progress and that I won’t be around that much longer to be Jennifer’s primary caregiver. There is no published data to inform me of what happens to people with metastatic bladder cancer who have had a partial or complete response to nivolumab. Looking at data for mets BC patients who have had other types of immunotherapy, an article published earlier this year examined long-term outcomes for people with metastatic urothelial cancer who were treated with atezolizumab.  A close reading of the data and review of the charts suggest that, once there is a recurrence, most patients die within a year.

A major limitation of this article is that the data set closed in December 2016, before many of the most recent combination drug therapies were even being tested. Also, the data set is small, the age of the patients skews much older than me, and they have more co-morbidities than do I. Plus, my recent scan tells me that, for now I have stable disease. But still. I am realistic about my poor prognosis. I have no use for rose-colored glasses, especially when planning for the care of my wife after I am dead.

We’ll get Jennifer settled into the Utah memory care facility in early July. Garrett will complete his two year mission for our church on July 10. Spencer and Kirsten will join us in Utah for a few days, and we’ll have a Brothers family reunion – the first time all of us will be together since March of 2016. Garrett will have only a few weeks to transition into normal life before he matriculates at Carnegie Mellon University in Pittsburgh, so at some point he and I will fly back to DC to prepare for school.

I’m scheduled for infusions through Kaiser on June 29, July 16, and July 30. I’ll ask to have a PET scan in late July or early August, which may give better insight into whether the nivolumab is working. Notwithstanding the results of yesterday’s scan, I have not been holding out hope that Opdivo will work as well this time, for three reasons. First, Dr. Hahn previously told me that, in theory, the nivolumab should have taught my immune system to kill every cell that had a PD-L1 enzyme, so any new tumor growth is probably another mutation of my mutation-rich metastatic bladder cancer. Second, my original mets lit up on CT scans a lot better than this tumor, leading me to wonder if it’s a different type of mutation. Third, projecting hope takes a lot of energy, and my energy has been directed elsewhere lately. Given that I have no control over my cancer, I have found that I expend far less emotional energy by accepting the facts of my prognosis as it is, rather than setting myself up for a dissonance between what may be false expectations and reality.  Plus, I’d rather be pleasantly surprised than bitterly disappointed.

If and when I find out that nivolumab isn’t working, I’ll look at my next options. That will be Plan F. I’ll reach out to Dr. Hahn and Dr. Apolo, among others. For some strange reason, there are more clinical trials available in the DC area than in Utah. Go figure. So maybe I’ll stay in DC longer, or commute back and forth between Utah and DC as needed. I knew there was a reason we hadn’t sold our house yet.

If, however, I learn in August that the Opdivo is causing my tumors to shrink, then I’ll likely relocate to Utah after I deliver Garrett to Carnegie Mellon. I’ll rent a place somewhere between Jennifer’s assisted living location and my grandchildren and look for goodness and joy every day.