Saturday, February 10, 2018

Three things I learned at the Cholangiocarcinoma Foundation conference

The annual conference of the Cholangiocarcinoma Foundation is a pretty special event. The Foundation has a core of dedicated, altruistic patients and caregivers who help everyone who attends to feel like part of a community. Teresa and I were eager to connect with other members of our patient community, and we did. At the same time, the event is a snapshot of the state of scientific research into this disease. One day is “science for patients,” and not too hard to follow. The other two days are full-throttle “science for scientists,” and way too advanced for me to understand perfectly – but making the effort to try to keep up gradually paid off and I felt like I left the conference understanding a lot more than I had when I arrived three days earlier.

There’s a lot I could say, and may say in future posts, about the science, but right now I want to comment on three more straightforward propositions that came clear for me at the conference.

First, doctors who give prognoses are not necessarily right. I already knew this in theory, of course, but it was great to hear people talk who’d been told they had only some number of months to live – years ago!

Second, there are some really long-term survivors of this illness. Again I knew that this should be true, and I’d even met one or two before. But when we encountered a 10-year survivor and an 8-year survivor at this conference, both of them going strong, I was impressed. I have the feeling that part of what has made this disease’s statistics look so grim is that it has been so little understood and so inexpertly treated, and this conference in and of itself is a step to change all that.

Third, and on a very different note, Teresa and I learned more about the actual world of treatment as it is right now, and in particular about the actual world of insurance. We met two or three families whose insurance covers them only in-state. This disease requires expert treatment by doctors who know its features well, but it’s a rare disease so the doctors who can acquire that kind of expertise are located at just a few places around the country. So what do these families do if none of the major cancer centers is located in their state? What political calculation was it that risked the health of people like these?


So we encountered community and science, hope and injustice, all in the course of just a few days. A valuable conference to attend.

Saturday, February 3, 2018

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.

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.