An annoying day at MSK

So last Friday, February 23, we went into MSK expecting to get the second round of my newly resumed chemotherapy. But it was not to be. How’s here it went down (as younger folks than I might put it).

We arrived bright and early, as usual, and quite quickly the first part of the lab work – taking my vital signs (temperature, blood pressure, heart rate and weight) – was complete. Normally at this point I move pretty quickly to the second lab stage, the day’s blood work. For some people, this is all one process, but because I have a “port,” a device implanted a little below my right collar bone to allow access to my circulatory system without wearing out the blood vessels in my arm, and because the port has to be accessed with special procedures designed to minimize the risk of any infection, I generally get the blood work done separately. Still the second stage usually follows pretty quickly on the first, but on Friday there was a delay, long enough that I went to ask if I was on their list and the person doing the port work told me there’d been a problem that had caused the delay.

Anyway, eventually I get called back for the second stage. This went okay except for two things: First, the nurse didn’t close the curtain around the workspace in which she was accessing my port. It’s true that accessing the port isn’t that private a process – the port is on my upper right chest, and I unbutton my shirt and pull down my undershirt to give the nurse access to it so that she can insert the rather large needle and then tape things in place and actually draw the blood. But still it’s not a process I really want to share with others, and normally the nurses automatically pull the curtain. I had to ask this woman if it would be all right to close it, and though she agreed without any rancor, the fact is that the curtain was never closed all the way. Then, second, this same nurse – who must have been new – also didn’t give me the ID bracelet that I normally get at this stage. She said someone would do that later, but in fact no one did, and so for the first time that I can recall in 2+ years of going through this process, I went through the day without that ID bracelet.

Then we waited. The doctor has to have the results of the blood work in order to be sure that I’m in good enough shape for treatment. Usually it takes an hour or so for the blood to be run through the many tests MSK does (for which I’m grateful!), and quite often we get the results on the MSK portal before we’re even called in to see the doctor. But this time we waited, and the results didn’t come in.

Nevertheless we got called to see the doctor. First we met her Fellow, who seemed to be another person from the pipeline of Irish doctors coming to MSK. (Our original oncologist was part of this pipeline, and has now returned to the old sod, and this woman was at least the second additional Irish doctor we’ve encountered.) We had a good conversation with her, in the course of which I got to report that the Tamiflu prescription listed on my MSK drug list had never actually been communicated to me. This was the previous week’s adventure: my sister Maud and her husband John came for a very nice visit, but during the visit – in fact, partly over dinner at a fairly small table at a restaurant near our home – he came down with the flu. I got a list of suggestions for vitamins that might reduce the chance that I’d catch the flu, called MSK to ask if they were all right for me to take, and never got an actual answer, but the covering nurse, while doubting that the oncologist would approve of the vitamins, said that perhaps Tamiflu would be helpful. But she never got back to me about it; when I called MSK again the next day no one mentioned it; and so it wasn’t until 10 days later that I learned that it had been prescribed. In fact I didn’t realize this completely until I went to my local pharmacy the following day and found that it was waiting for me. But none of that was this Fellow’s fault, and in fact the oncologist said she would speak to the nurse in question about it.

We also had a good conversation with the oncologist herself, basically about what Teresa and I had learned at the Cholangiocarcinoma Foundation conference at the beginning of February. What we’d learned included the fact that chemotherapy via the pump seems to be a quite effective mode of treatment – if done at MSK! Why only here? Probably the answer has a lot to do with the expertise MSK has in using this method of treatment, and my oncologist (whom my first oncologist selected for us) is an expert in exactly that. So we’re in no hurry to leave treatment via the pump, and said so. That said, we also reported the view of a lot of people at the conference that it was important to have one’s tumors checked for new or different mutations, a step that seems particularly appropriate for me since my three biopsies so far have each produced different and nonoverlapping results, and the oncologist seemed to agree that this would make sense. In addition we discussed various conceivable clinical trials, which the oncologist offered thoughtful comments about. But all this was in the context of my impending chemotherapy on Friday; I think everyone assumed that that was what I was about to get. I looked and felt reasonably well, and so we thought my liver would agree and the blood work would show it. But when we left the doctor’s office she still didn’t have the blood results either.

We returned to the waiting room, and did some more waiting. Eventually I asked one of the administrative staff to see when we could expect to move forward, and she checked and found out that I had been “resulted” – the test results had come through – even though we couldn’t yet access them (and she perhaps couldn’t either). But she said she would call back to someone inside (probably that meant, “inside the chemotherapy suite,” where the treatment is actually administered) and let me know. Though we were sitting pretty much in her line of sight, she never did get back to us.

But finally one of the callers (the people who call your name and collect you and bring you to one place or another) emerged, and brought us back to the chemotherapy suite. There a nice nurse was waiting, and soon explained that the delay had been at least partly because my medication had to be returned to the pharmacy. Why? Because I was not getting chemotherapy after all. My liver, fine two weeks earlier at the end of the chemotherapy, had apparently spent the two weeks since then – the rest period when only saline solution and blood thinner were going into the pump – getting inflamed. And now I wasn’t able to have any treatment – except a resumption of the steroid treatment that had been used between October and January to calm my liver down after the last time it got inflamed.

I couldn’t quarrel with this. That is, logically I couldn’t argue with the necessity of soothing my liver. The liver has to work. But I also couldn’t quarrel with it because there was no one to quarrel, or even talk, with. When we saw the oncologist she didn’t anticipate this, and when it happened she no doubt was with other patients, with their own sets of questions. It seemed pointless to ask for her nurse to come talk with me; what could he say except that the doctor had ordered this? So there was no one to discuss this with. There probably wasn’t anything really to say either, but I would have liked an opportunity to plead my case, or at least to hear it explained by the person making the decisions about it. I certainly have various questions now, and will aim to get answers to them at or before our next meeting with the oncologist about two weeks from now.

One thing that has struck me is that, in hindsight, it may have been unfortunate that I was put on just saline solution and blood thinner for the two weeks after my last round of chemotherapy. It’s clear that steroids tend to reduce liver inflammation; that’s why MSK used it to bring down my inflammation last fall. In fact, MSK also gives me two doses of steroid (one by itself through my port, one mixed with the 5FU chemo drug and infused through the pump) as part of administering my chemotherapy, at least partly in order to get a head start on keeping the liver calm. The one time I don’t have any steroid is during the rest period, and it was during that rest period, and not during the chemotherapy period that preceded it, that my liver went awry. The cause was probably the residual effects of the chemotherapy, but what I’m thinking is that as those effects were taking place, I didn’t have any protection in the form of steroids to tamp them down. I don’t want to be on steroids all the time – they have their own side-effects, some of which I’ve experienced – but I would rather do that, at least for a while, than be unable to maintain a regular chemotherapy schedule. So I want to discuss this idea with the oncologist in time to affect what’s done next. But at least now I am back on the steroid, being used once again to calm my liver.

In short, an annoying day at MSK. I realize that some part of my annoyance may be the result of the mood-impacting effects of steroid treatment. But not all!

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.

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.