Last Friday, December 29, we went in to Sloan Kettering for
the biweekly appointment that’s become routine. It had been some time since I’d
actually received any treatment except the steroids that were going through my
pump directly to the liver to treat the liver inflammation I experienced
earlier in the fall. But for the past month or so our oncologist had been
tapering off the dose of steroids, and so we had come to think that this time
the steroids might actually end and the chemotherapy resume.
The oncologist herself was away, but we met with the nurse
practitioner who is part of the practice group. She began by telling us, with
some excitement, that this time they were going to put glycerol in my pump. She
seemed to feel this was good news, but to us it was not. That was partly
because glycerol is not chemotherapy; it is, instead, what they put in the pump
when they’re basically taking the pump out of service for an extended period,
up to six weeks or so. It was also not good news to us because we were both so
taken by surprise to hear it. When we thought about it all afterwards, it did
seem that the oncologist had mentioned, back at our December 14 session, that
the next time they might put in steroids (again) or glycerol, but this hadn’t
registered with either of us. And the reason it hadn’t registered with us is
that we had no idea that Sloan Kettering’s plan was to continue my break from
chemotherapy.
This led to what diplomats call a “full and frank exchange
of views” between us and the nurse practitioner, and to an appointment to see
the oncologist a week early, or in other words on January 5. As it turned out,
we never had that appointment, because on January 4 New York was one of the
targets of a major storm, which in turn was followed by a really impressive
cold snap, and the oncologist kindly called me at the end of the day on January
4 to propose that we simply talk then and there on the phone.
So we did just that (with Teresa and me listening to the
oncologist on speaker). This conversation was much more reassuring than the one
we had had on December 29, and a big part of the reason was that the oncologist
now explained to us what her reasoning was.
As readers of this blog will recall, the scan I’d had
shortly before the December 14 session had produced an encouraging and
surprising result. Even though I hadn’t received any chemotherapy at that point
for about two months, the scan showed that my largest tumor was now smaller;
and that of the smaller tumors, some were a little smaller, some unchanged, and
some – not many – were a little bigger.
We knew that already, though, and we’d assumed that the next
move would be more chemotherapy to follow up on this encouraging scan. But our
oncologist felt otherwise, and that seemed to be for two reasons. First, she
appears to feel that this is about as good a result as I’m predictably likely
to get with current possible treatments. It’s not impossible that some other
treatment would get better results, but that’s unavoidably uncertain, so the
“bird in the hand” is my current, pretty good state. Second, she is worried
that renewed chemotherapy might renew my liver inflammation too. Liver
inflammation, she reminded us, is really not good: I could wind up with a liver
stent, which among other things then increases the chance of infections. It’s
much better if my liver continues to go about its business as it should – and
as the latest bloodwork shows it is.
So what to do? Actually there’s a simple answer. The
oncologist plans to have me get another scan by early February. If the results
are as encouraging as the previous one’s, we might very well wait again. But if
the results show that the cancer is on the move, then it will be time for new
treatment.
Which new treatment? One possibility is the same chemo I was
on before, the chemo that caused the liver inflammation, but at a lower dose.
But another possibility is a clinical trial. The oncologist told us – and this
was news too – that she’s always keeping the possibility of a clinical trial in
the back of her mind. Apparently there are some underway at Sloan Kettering
that she’s thought about, but I don’t think she wants to go in that direction
as long as I’m doing as well as I am, on the “bird in the hand” theory. Should
we apply to one of these in advance? That doesn’t work, she explained; the
slots in the trials open and then are filled very quickly, so I have to be
ready to move in that direction when I start applying. (She also mentioned that
liver inflammation can make me ineligible for clinical trials, another
important piece of information.)
Meanwhile, the impact of stopping the steroids hasn’t been
entirely trivial. It may be that I’ve in effect been running on steroids for
the past months – and now that I’m definitely not doing so, since the dosing
with steroids has ended, I’ve been very tired. At the same time, every use of
the pump seems to upset my digestive system, even the injection of a substance
like glycerol that’s been chosen for its innocuousness. But I’m hoping that
these various problems will go away in due course, and if so I’ll be able to
wait for the next scan, and perhaps then for the scan after that, and so on.
For now, we’re going to be researching clinical trials. Sloan Kettering’s may be the best, but on the other hand they may not be, and we’ll be trying to find out as much as we can in the coming weeks.
