The prologue:
MSK gave me a prognosis for the first time, when we met with
our oncologist on Thursday, January 24, 2019. The prognosis is six months.
The reasons:
I had been having difficulties. A scan back on December 11, 2018
had determined that my cancer was again in action. Shaping a response to that
took time, both because of the holiday season and because I’m sure the doctors
wanted to be as careful as possible. The conclusion they seemed to be coming to,
even before we met on January 24, was that there were no good affirmative
treatments likely to be available. We had no doubt this was a reasonable
assessment of the situation, but felt that it might still be true that even a
treatment unlikely to succeed was better than no treatment at all. Our
oncologist’s view was, we thought, evolving to the opposite perspective: that
if no treatment was likely to be successful then there was no point in trying
them at all.
What decided the issue was a series of scans in late January,
which included a January 15 X-ray of my abdomen as well as a CT scan, that same
day, of my abdomen and pelvis done during my digestive blockage visit to MSK’s
Urgent Care ward (a visit I blogged about as well). They also included an MRI
of my pelvis on January 22. I had yet another scan on January 25, but that was
to diagnose whether I had suffered a broken foot or not, and didn’t otherwise
contribute to the study of my condition.
In truth, the information in theses scans is hard to keep
clear and distinct. One scan is referred to as comparing its findings with data
from a scan done a couple of days later, but I had no such additional scan that
day. Another scan attributes the wrong disease to me – saying I have colon
cancer when I actually have a different illness, cholangiocarcinoma. These
mistakes are a bit unsettling, but the general import of the scan results
nevertheless emerges clearly.
If the scans proved determinative, what led MSK to determine
that they should do the scans in the first place? Their concerns were triggered
in good part by the MSK physicians’ growing suspicion about a lesion, a damaged
area, in my right iliac bone, which is part of the pelvis. MSK had been aware
of this spot since approximately April 2018, but had not been particularly
suspicious about it. Now, however, yet another scan in December 2018 had shown
growth in this spot, and growth is important. For our part, we too had hoped
not to need to pay attention to this spot. After all, I didn’t think I had any
symptoms of it at all – but over the weekend before the scan I began to realize
that maybe I did have symptoms, perhaps from walking further than was
comfortable, perhaps from such minor motions as bending over to do the dishes. Mostly
not a lot of pain – but cholangiocarcinoma is full of minor, yet ultimately
meaningful, symptoms. Meanwhile, growth is cancer’s specialty, so the fact that
this spot had recently started to grow was a bad sign.
The scan series in January 2019 appears to have confirmed
two thoughts for our oncologist. The first is that the cancer has escaped from
the liver and reached the bones as well. One report, on still another CT scan
done on January 15, 2019, indicated this but not elaborately; a second, on an
MRI scan done a week later, January 22, 2019, left no room for doubt. There has
been a lot of damage to the bones of the pelvic area, presumably the result of
its infiltration by the cancer, and all of it appears to have taken place in
the last 12 months. Parts of the bone have probably died. All of this makes me vulnerable
to things like bone fractures, including hip fractures, which would put me
right away in a wheelchair.
When the skeleton weakens, you are at greater risk both for “spontaneous”
fractures, which can apparently take place while you’re doing nothing more
strenuous than sleeping, and for fractures caused by impact and accident. There
are things that can be done to reduce the chances of incident, such as
installing assistive equipment, like guide bars, machinery to help me get
around the house; as we do more with this I may blog about our progress, but in
any case this effort is now underway.
As to the impact and accident fractures, for me those are
more likely than they otherwise might be because of all the water I’m still retaining,
especially in my feet. The water retention is another impact of my damaged
liver (and of its interaction with the diuretic medication, and in turn with my
kidneys). The water retention in itself isn’t a big problem, and doesn’t
contribute to my underlying cancer in any direct way. However, in the
Department of Irony, currently running strong, a couple of hours after we got
home from our Thursday meeting last week with the oncologist, at which we’d
received a lot of precautionary guidance, I fell at the bottom of our stairs.
Fortunately the fall was only two steps down. I landed hard, but even more
fortunately the fall didn’t fracture anything; it caused “just” a sprain. My
left foot did take on some remarkable colors right away. Depending on how many
separate sprains I gave myself, recovery could take as long as six or seven
weeks. So far, however, things seem to be moving quite quickly and positively.
The second conclusion our oncologist and her colleagues have
reached is that my liver has already been seriously damaged. One measure of such
damage is the growth of the cancer itself, and the January 15 CT scan of my
abdomen and pelvis lists a number of growing, and probably new, changes in my
liver and bile duct of this sort. Other evidence comes from blood testing of
liver function. My general sense is that my liver and kidney blood numbers were
good until the conclusion of the high-intensity radiation treatment this past
summer, and that at that point they began to deteriorate. It’s easy to see what
caused the damage: not the water retention, but rather the combination
of three years of different powerful treatments, including chemotherapy and,
most recently, high-intensity radiation. These all did their job, staving off
or pushing back the cancer for years – the oncologist has been happy to have me
as an “outlier” to the normal course of the disease – but the price was liver
damage. I’ve recently read that actually the liver handled over 500 different
functions in the body, not just the 400 I’d seen referred to earlier. Any of those
may now be malfunctioning.
What’s bad about liver damage is that there is no cure for
it. It is possible for the liver to regenerate, but that is a slow process and
one under nature’s guidance; there seems to be little if anything a doctor can
do to bring about regeneration by direct medical intervention. There is no “liver-all”
pill to take 3 times a day! The only method available to doctors of which I’m
aware is resection – the complete surgical removal of part of the liver, but
MSK has never seen me as a good candidate for this approach. That means that
any heavy-duty treatment that gets applied at this point runs the risk of
deepening my current liver problems, and if the liver stops functioning, that
is really the end.
What is to be done next?
That in turn suggests that what’s ideal for me is to stick with
exactly what I now have. The status quo has its inconveniences, such as water
retention, but they can all be managed. Evidently, however, our oncologist
anticipates a continued deterioration of the liver, presumably as a result of a
continued growth of my cancer.
To stave that off as long as possible therefore becomes our
next goal. Happily, there is something that can be done about this: the
application of low-intensity radiation. High-intensity beams are too powerful
and too dangerous, but low-intensity beams have been in use for a number of
years and their capacity to slow, though not end, expansion of the cancer in
the bones (and perhaps even in the liver itself – a point I want to ask more
about) is evidently well-established.
One other point: I exaggerated a bit when I said that MSK
took the view that there was nothing truly affirmative to be done. There is one
treatment available which, though not very promising for patients with my kind
of cancer (it wasn’t designed with this illness in mind), still could
conceivably help and even help a lot: Keytruda. This is the drug that helped
Jimmy Carter fight off brain cancer. MSK is comfortable with trying it because
they feel they know very well what its potential downsides in the body are, and
they’re mild. So they are quite confident that Keytruda won’t undermine what’s
left of my liver functioning, and though it likely won’t improve matters
either, it will succeed or fail without further weakening me.
The only problem with Keytruda is that it is very expensive –
I think over $10,000 for each treatment, with the treatments every three weeks.
Merck, which makes Keytruda, enables many potential patients to get around this
problem by giving them access to the drug as a “compassionate use” under federal
law; no doubt this is only partly an act of charity, while also serving as a
way for Merck to continue gathering data on its drug, with a view to the widest
possible use and sale of the medication. In any case, we and MSK have applied to
receive the drug as a compassionate use. Decisionmaking at Merck this month has
apparently been slow, for reasons no one outside the company is sure of, but we
will continue to press the point.
There may be other possibilities, though with the
difficulties my liver and kidneys now face I may not easily be able to qualify
for most experimental trials. Even if I can qualify, we’ll have to determine
whether these experiments make sense for me. For example, we’ve certainly
considered the “CAR-T” experiment at the National Institutes of Health, a trial
in which the patient’s immune system is more or less entirely removed,
re-trained to focus on cholangiocarcinoma, and then returned to the patient’s
body. The general sense Teresa and I have is that steps like these are a last
resort, or no resort at all, because they do pose serious risks of danger to
the patient – especially, we assume, one with a damaged liver already.
And meanwhile:
I plan to live the life I’ve lived, valuing and spending
time with my family and friends. I also plan to continue the final steps in the
work that I’ve had underway, the biography of my late South African friend
Arthur Chaskalson, roughly since I received my diagnosis in 2015. I’ve often
felt since I became ill that each day in itself is a wonderful thing. In recent
months my sense of this has wobbled at times, so now I mean to remind myself,
and to take joy in each remaining day. And if there turn out to be a lot of those remaining days, so much the better!
