My Liver Cancer Blog

I know that sounds bizarre. I think most people think of chemo as this horrible experience that causes nausea, vomiting, hair loss, and exhaustion. I know I thought of it that way. And for many people it is a wretched experience. But I’m one of the lucky ones (so far, knock on wood) who has experienced minimal side effects. I get chemo-immunotherapy on Monday mornings for about 3 hours, feel crappy in the afternoon, feel a little tired on Tuesday, and by Wednesday I feel fine. I’ve experienced night sweats (icky) and some ringing in my ears (annoying, but it goes away in a few seconds), but mostly I feel fine. Better than fine. Better than I’ve felt in months.

And, in fact, the chemo-immunotherapy process has been pretty pleasant. My very first day I was afraid, but I was assigned Nurse D., who was warm, funny, highly experienced, and checked in on me often. All the nurses but one have been friendly and kind.

When I arrive at the hospital, I check in, and I’m given a pager that buzzes when my assigned nurse is ready for me – sometimes the wait is 15 minutes, sometimes an hour. The hospital has a couple of great lounge areas, including one with fully reclining chairs. It also has a store that sells delicious croissants (who would have guessed that the best croissants I’ve had in Canada come from a hospital store?). When the pager buzzes, I go back to where I checked in, give back the pager, and I’m assigned to a “pod” (basically, different sections on the 4th floor where chemo takes place) and a chair (the pods are color-coded, so, for example, I might be assigned to Purple 12 or Orange 7). The pods are usually pretty full. A couple of times I’ve been stuck in a chair in a cramped corner, but a couple of times I’ve had a small, private room with a stretcher bed. Patients don’t really talk to each other, but almost everyone has a family member with them, and most spend a lot of time on their phones or just chatting. I bring a small knapsack, filled with a throw blanket, iPad, headphones, kindle, slippers, and gummy bears. I usually download a movie or two on Sunday night – movies with kickass female heroines (like Colombiana, Atomic Blond, or Divergent). These help me feel courageous and resilient during the process.

The chemo-immunotherapy is given one drug at a time (not as a mixed cocktail), and there’s always a “flush” after each drug (just IV fluids). They have a very rigorous protocol to ensure you don’t receive someone else’s chemo combination. Before each drug they ask your name and date of birth, and then a second nurse comes and checks to ensure that your name and date of birth are also on the bags that contain the drugs. Each drug and your ID are scanned into the system. They also check your vitals after each drug to ensure your blood pressure isn’t fluctuating dramatically and you haven’t spiked a fever. The nurses put warm sheets over you and wrap a heating pad around the arm where the injection site is to relieve any pain.

My husband always comes with me, and when he hasn’t, my parents, friends, or my step-daughter have joined me. I’ve never been alone during chemo. We’re usually hungry for lunch after and stop for sandwiches before heading home. I’ve been encouraged to increase my protein intake, so I’ve been eating a lot more tuna salad sandwiches and fish soup, and we always have steak the night before chemo. Before the cancer diagnosis we didn’t have steak often, but it has become an important ritual that makes me feel strong and fortified for the next day.

And although the first scan didn’t show that the large tumor had decreased in size, I am hopeful. My liver function indicators are much better than they were a month ago, and I feel much better. So I think it’s working.

But here’s the thing – the current standard protocol for cholangiocarcinoma treatment (based on something called the TOPAZ trial) calls for 8 cycles (6 months) of chemo-immunotherapy, followed by immunotherapy only every 4 weeks “until disease progression” or the patient can’t tolerate the side effects. I’m a little afraid of just being on immunotherapy without the chemo. Will that be enough? What if the next scan shows that the large tumor has decreased in size — am I just supposed to give up the combo of drugs if it appears to be working? What if I want to keep going for 2 or 3 more cycles after the standard 8 to see if it continues to shrink? Will my oncologist let me? If not, what are my options? In other words, right now I’m very happy with chemo-immunotherapy — it appears to be working (at least in terms of how healthy and energetic I feel) and the side effects are negligible (or have been so far – may it continue). I’m almost halfway through the 8 cycles, and I’m fearful about what comes next.

During my most recent appointment with my oncologist I felt like he was hurrying us along, eager to move onto his next patient. I think I’ve been categorized as a patient who is doing well, or at least has good bloodwork and isn’t suffering bad side effects, and so doesn’t need (or shouldn’t need) a lot of attention. But also maybe I’ve been categorized as a patient who asks pesky questions about treatments that aren’t available in Canada (e.g histotripsy, which he is sceptical about, and hepatic artery infusion pumps, which he is in favor of, and which are approved and increasingly used in the US, but are only in trials in Canada, and only for colorectal cancer, not my kind of cancer). And we don’t yet have the results of the genomic analysis of my tumor, so I don’t know if I’ll be eligible for any targeted therapies. It doesn’t help my anxiety about what comes next that every webinar I attend (offered by the Cholangiocarcinoma Foundation) begins with the terrible prognosis for this cancer. The speakers could be talking about targeted therapies, liver transplantation, or radiation — they all begin by saying the median survival rate is 1 year. (Do they not realize their audience is mostly patients and caregivers who really don’t need to be reminded of this over and over?)

So yes, I’m worried about what the future holds in terms of treatment. I’m worried that this time right now is the best I will feel during my “cancer journey,” and I’m worried I will miss what has become the comfort of chemo.