An unexpected chemotherapy holiday

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.