Back on the sauce

I mentioned in my last post, on January 8, 2018, that back on December 29, 2017 Sloan Kettering had finished tapering off my steroid treatment, and that I hadn’t been feeling so well since they did so. (I’d been receiving the steroids to deal with the inflammation of my liver that I’d experienced in late 2017, apparently a side-effect of the chemotherapy; meanwhile I was on chemotherapy “holiday.”) After that post I continued to not feel well: my energy was low, my digestion upset. Meanwhile I wasn’t receiving any treatment at all: the steroids had been tapered off to zero, and the oncologist felt that my December scan showed I was doing well enough that I should continue without chemotherapy unless my tumors resumed growing. It was, frankly, a bit weird to have no treatment going on, while something – I didn’t know what – was happening to my body. But I described all this to the Sloan Kettering folks (special hat tip to my oncologist’s nurse, with whom I spoke in detail), and they decided to schedule my next scan a little earlier than they otherwise might have.

So I got scanned on January 23. Each time I do an MRI I’m puzzled again about exactly what I’m supposed to do as the patient. Not long ago I was told that I was breathing too faintly, which seemed to be the result of my falling asleep during the scan; this time the MRI staff said it was fine if I went to sleep, but then they redid one part of the scan because I was breathing too heavily! I’m not sure what a good scan actually looks like – to my eyes they all seem pretty hard to decipher – but it does appear that whatever a good scan is, there are multiple ways of going about getting it. Some MRI staff favor one approach, some another. For sure, the human interaction between the patient and the MRI staff is important to the successful use of this high-tech tool.

But in any case I did well enough to produce clear images. We learned the next day, January 24, that what the images showed was renewed growth of my tumors, mostly but not always growth measurable in millimeters. And that in turn meant that our oncologist decided chemotherapy should resume – that very day. I’m back on the combination of FUDR and mitomycin, administered through separate channels of my intrahepatic pump. The FUDR dose has been reduced, to limit the chance that my liver will again get inflamed, but the oncologist is confident that a reduced dose can still be clinically effective. I’ll be on the current infusion till this coming Wednesday, February 7, then off for about two weeks, and then, assuming my liver has tolerated the resumption of chemo all right, the next round will start on Friday, February 23.

It would have been better news, of course, if my tumors were still stable or even contracting. But this news is at least clarifying: I wasn’t feeling well, and it’s plausible to think that the reason is that the tumors were growing. Tumor growth, it seems, takes its own toll on my body. The best news is that since I’ve gone back onto chemotherapy, I’ve definitely felt better. At first it seemed possible that this was because of the steroids which accompany the chemotherapy, since after the steroids were tapered off to zero at the end of 2017, I was actually on a steroid holiday as well as a chemotherapy holiday. But at this point the amount of steroid I’m getting via the pump is very small (something like a milliliter a day, and flowing into my liver rather than directly into the rest of my body), and so I suspect that the reason I’m feeling better is that the chemo itself is working and I really am better. Hopefully the next scan, probably a month or two from now, will confirm what I think my body is saying.

Whether it does or doesn’t, though, it’s clear that it’s time for us to think seriously about clinical trials or other treatments, since at some point the FUDR/mitomycin combination may lose its impact. Teresa and I have just been to the Cholangiocarcinoma Foundation’s excellent annual conference in Salt Lake City, where we learned a great deal about the current state of the science and the clinical trials that are getting underway. I wouldn’t say we got a lot of answers, but we certainly came home with many new questions – some of which I’m sure I’ll be writing about in future blog posts.

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 13^th 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.