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.
