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.