Monday, January 8, 2018

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.

Saturday, December 16, 2017

The benefits of waiting

Two weeks ago, on December 1, 2017, Teresa and I went in to Memorial Sloan Kettering for what we’d hoped would be the resumption of my chemotherapy. I hadn’t had any actual treatment since October 20, because my blood work had revealed that my liver was inflamed, presumably a reaction to the chemotherapy itself. I’d had very good luck up until then in avoiding the “toxicity” that chemotherapy can cause, but once it arrived it had to be dealt with. From October 20 on, therefore, the treatment I had been receiving was not chemotherapy but a steroid, infused into my liver via the same intrahepatic pump that had been the vehicle for the chemotherapy.

Anyway, we arrived on December 1 and learned that Sloan Kettering had already decided to continue the steroid treatment for another two weeks. We didn’t actually see the oncologist (who may have been out of town); instead, the nurse practitioner who works with the oncologist told us what the plan was. In fact she told us that I’d be getting only steroids before the results of that morning’s blood work were even available. That meant it was possible that I’d be getting more steroids for a liver inflammation that the blood work would show was no longer perceptible. But that wasn’t what the blood work showed when the test results came in a few minutes later; it appeared from the tests that my liver, though much better than it had been on October 20, was still in somewhat shaky condition. So – two more weeks of steroid. The one bright point was that the steroid dose was being somewhat reduced, to start the process of gradually taking me off of it.

Even though this all made sense, it was also worrying. By my next appointment, scheduled for yesterday, December 15, I would have been without chemotherapy for 8 full weeks. That, we thought, couldn’t be good as far as keeping the cancer in check was concerned. So I asked if I could get scanned again to see what was going on with my tumors, and this was arranged for Wednesday, December 13, so that the oncologist would have the scan results when we saw her on December 15.

The MRI on December 13 was a bit of an adventure. (The MRI covered my midsection and lower abdomen; I also had a CT scan of my upper body – that was quick and easy, unlike the MRI.) I’d had some difficulty with my previous MRI as well. At one point the MRI technician had told me that I should “breathe normally”; this instruction I found really unhelpful, since I wasn’t sure in what way my previous breathing had been abnormal. Then later they did a series of quite quick images – I’d hold my breath for about 5 seconds, instead of the 20+ seconds I’d gotten used to – and this series seemed to go on forever. Afterwards – but only afterwards – the technician told me that I hadn’t been breathing right. Apparently the machine, or its operator, just repeated each image until I finally held my breath correctly, but no one explained that this was happening or told me what I was doing wrong. I'm glad to say that MRI’s do not bathe you in dangerous radiation (as I confirmed on the internet later that day); otherwise I would have been very upset.

Still, I was still dismayed enough about my last MRI that on December 13 I made sure to tell two or three different staff people that if I was doing something wrong I needed to be told what it was so I could fix it. The technician on the 13th did just that; I can’t fault him at all. Sadly, knowing what was wrong did not enable me to fix it. The problem: I kept falling asleep.

One might think it would be impossible to fall asleep during an MRI. If you’ve had one of these, you know that throughout the 45 minutes or more that the test takes, you are simply bombarded with loud noises. There are many different noises, perhaps corresponding to different inflections of the magnet that is creating the Magnetic Resonance Images. I have to say that while I can understand the idea that bending a magnet would make a noise, I don’t at all understand how it produces the variety of rhythmic noises that in fact accompany an MRI. But one thing is clear: it’s noisy.

Noise, however, doesn’t necessarily keep me awake. I feel asleep once at an NBA game! It certainly didn’t keep me from falling asleep during Wednesday’s MRI. The problem with falling asleep was that when I did so I also began breathing more shallowly (which must have been the abnormal breathing the technician had complained of in the previous MRI). Again one might think that shallower breathing would actually be good for the MRI, since it would mean that everything was staying more in one place. But evidently the MRI is designed to compensate for the patient’s normal breathing (a nice computational feat, it seems to me), and so when what it encounters is less-than-the-normal breathing, it produces images that are blurred.

I was trying hard to stay awake. I reminded myself that this was really important; I tried counting during each breath; but despite my efforts I would catch myself dreaming and even though I thought I was catching myself quickly, it wasn’t quickly enough. In the end the technician decided to have me do more of the “hold your breath” images – I was pretty good at holding my breath as instructed, and stayed awake while I did so – to compensate for my failings at other stages of the test. It was a relief to learn from the oncologist on Friday that the resulting images were good enough to read. And the technician didn’t report me as a bad patient, as the oncologist told us they sometimes do! Actually, the technician said to me afterwards that the MRI can put patients into a trance – I’m not sure that quite describes what I experienced, but I was glad to know I wasn’t alone.

One more thought about why I fell asleep: I was sleepy. Why? One reason is that I’ve been having trouble sleeping – which may be partly due to the steroid that I’m being continuously treated with. I’ve done a surprising amount of reading in the small hours of the morning, but it seems like every minute of being awake at the wrong time costs you double later on in the day when you really want to be awake. For instance, during your MRI. The MSK folks prescribed a sleeping pill, but this pill’s side effects include things like sleep-walking, sleep-driving, and sleep-cooking, and those scared me. They also scared Teresa, who anticipated nights of her monitoring me to see what I’m sleep-doing next. So I haven’t tried these pills. Fortunately now the oncologist has suggested over-the-counter Benadryl might do the trick.

Anyway, I didn’t fail the test, and on Friday we got the results. The oncologist was very pleased, and I think a bit surprised. It turned out that in the 54 days that I’d been without chemotherapy, most of my tumors had gotten smaller; a couple had grown modestly (a couple of millimeters) but the oncologist said we didn’t need to worry about those. All of this was really good news. (What accounts for this good news? I don't think anyone knows for sure, but the oncologist had suggested even before this scan that the chemotherapy I'd already received might still be in my liver, even many weeks after the last dose was administered. We'd begun to think that that just meant I was continuing to experience the medications' uncomfortable side-effects, but these results suggest that I'm getting the primary, curative effects too.)
The oncologist had decided that I should have another two weeks of steroid treatment, which a few days earlier would have worried me; but with this good news about my tumors’ performance over the previous weeks, I felt quite comfortable with postponing the return to chemotherapy once more. And all the better that Friday’s blood tests, when their results came in, showed my liver was improving. Meanwhile the steroid dose was reduced again; I think what I’m receiving now is about one third of what I started off with. With all this, it seems as if the logical next step will be the resumption of chemo at our next appointment, on December 29, or soon after that. The whole thing adds up – and I mean this without any irony, or at least without much – to a holiday gift. 

Saturday, November 25, 2017

Two years of cancer

On November 25, 2015 Teresa and I learned that I had cholangiocarcinoma. It was a frightening time.

Now here we are, exactly two years later. I’ve been in chemotherapy more or less continuously through that time, and expect to stay in it for the foreseeable future. It’s not something I’d have done if I didn’t have to, but that said, it’s not too bad either. It’s also worked pretty well in keeping the cancer in check.

As a result, I’m still here and still going strong. With Teresa’s constant help, I’ve learned to live with cancer. I’ve been very fortunate to be able to do work that I enjoy – writing a biography of a great South African judge who was also a friend of mine – and I’ve appreciated each day (okay, most days) in a way that I might have been too hurried and harried to do before.

It’s good to be here. On to the next two years, and the two years after that, and more.