My Liver Cancer Blog

So, I did go home for Christmas, and spent a wonderful couple of days with my parents and siblings. I love Christmas in my parents’ home — lush poinsettias, a lovely Douglas Fir with decorations made or collected over the years, A Ceremony of Carols and other classIc Christmas music, my brother playing banjo, my sister giving my mother “turkey joints” (a chocolate and hazelnut candy invented by a woman from my mother’s home town — https://www.turkeyjoints.com), and a roaring fire all day long. And this year we were joined by my step-daughter, who is always a delight, and who is in the process of buying a house (so, I’m alive for that big milestone – yay!).

The trip was a bit of a FOTLAG though (a fucking opportunity to learn and grow, or maybe just learn, in this case). I realized, for example, that it can be a little difficult to be with a large group of people who are drinking when you are not. Not that my family drinks a ton — it’s just that even with only one or two glasses of wine, the conversation gets louder, faster, more interrupt-y, and, for those not socially lubricated (or at least for me), more tiring. I also realized that if I do another trip, I need to plan better — and especially have a plan to ensure stability of the daily things that keep me healthy. On Christmas Day I forgot to take all my medications, and I didn’t hydrate enough, and I’m pretty sure that’s why I felt completely shitty the day after. Or actually I felt fine in the morning, but then like crap by noon, which I think was a result of taking my blood pressure medication after missing a day. I was so lightheaded I couldn’t manage being vertical, which made packing up to go home a real challenge (though it’s also the case, we learned from bloodwork done yesterday, that my hemoglobin is very low, and the chemo/immunotherapy has caused hypothyroidism, so that might have had something to do with it also. Essentially the chemo/immunotherapy has killed my thyroid gland, and so I’ll have to be on meds from now on. Update: And this just in — this morning I met with my family doctor, and she thinks it was all caused by the sudden hypothyroidism, not the blood pressure medication, or my having missed a day). And my gastritis suddenly got far worse, and the buildup of gas in my stomach made me vomit (though thankfully not on the car ride home). So, in the end, a wonderful trip that took me about 3 days to recover from.

My step-daughter recommended that if I take another trip I should let my travel companions know what I need to do, so they can help me with things like remembering to take my meds at the same time every day. So wise, my step-daughter. (I should maybe add that my husband thought this Christmas trip was a bad idea because of the potential health setbacks, and I need to commend him on not even gesturing at an “I told you so…”) Speaking of risky, poorly planned travel, last night I had a dream that a friend was trying to convince me to take a children’s summer camp scuba diving in Port-au-Prince harbour, and I had some misgivings. We were in Port-au-Prince (scouting the location for summer camp suitability, I guess?? Also, I’ve never been to Haiti, and learned to scuba dive long ago, but haven’t for decades), and some Haitian people who overheard us immediately jumped in to tell me that by 4pm I should be behind locked, secure doors and gates with armed security guards outside because gangs had taken over the city and there really wasn’t any government any more, and that scuba diving in the harbour was the craziest thing they’d ever heard. I think my poor little dreaming subconscious has not quite recovered from the Christmas trip, even though my body has. I am currently sitting on my couch giggling about my dream and trying to convince my subconscious that I really, truly will not make reckless travel plans.

So, today is New Year’s Eve, and I’ve been wondering what resolutions one makes when one may not make it through the year. I think maybe the key is to focus on things that are small and doable from the very start — e.g. my “movement is medicine” has kind of fallen apart since the weather turned wintry and I got the flu, so I can strive to just take a long walk (outside or on my basement treadmill) at least 3 days/week. And I think I can resolve to enjoy every month a little bit more than usual, which I’ve already started on by buying tickets to stand-up comic shows in January and February. And I have found that expressing gratitude more openly and fully really does make you happier, so I can do more of that. And I’ve resolved to tell more people that I have cancer. For the last 6 months I’ve really only told close friends and family, knowing that the news would trickle out to others, and giving my loved ones permission to share. And, of course, this blog is public, so it’s not like I’m really trying hard to keep it a secret. But, it felt a little painful and scary to talk about it with more people. I think each person I tell makes it that much more real to me. Also, to be honest, the thought of colleagues who were really difficult when I chaired my department talking about my having cancer made me feel queasy — as if their gossip about me would be like grubby little fingers dirtying me. But I think I’m ready to share more widely with friends. Slowly, slowly.

On to cancer treatment news, and this might come out a bit rough since I’m still processing. Yesterday was disappointing. Another of the worries I’ve had — that my oncologist would decide I shouldn’t continue with the gem/cis/durva regimen — has taken place. So, starting on Monday, I will be getting durva (immunotherapy only) once/month. This is actually the standard protocol: 8 cycles of chemo with immunotherapy, followed by monthly immunotherapy-only until disease progression or the patient can no longer handle the side effects. This protocol is based on the Topaz 1 clinical trial, and is what most cholangiocarcinoma patients receive as a first line of treatment. What was surprising to me was that the last time we saw my oncologist, he wanted to continue beyond the 8 cycles for at least a couple more: “I want to get everything out of this combination that we can,” he said. But yesterday he had changed his tune: “I’m getting pressure from the Ontario government to not go beyond Cycle 8, and there’s no evidence that it’s effective beyond Cycle 8, so you’re not missing out on anything, and anyway, you’ve started accumulating a lot of toxic side effects.”

So, all of that is true. There is no evidence for efficacy beyond Cycle 8 because the Topaz trial only included 8 cycles (not 10 or 12), and no one else has done an official trial beyond Cycle 8. But, some people in the cholangiocarcinoma FB group have continued beyond Cycle 8 and saw some additional tumor shrinkage (though certainly not all, or even most. In fact, many people have to quit after a few cycles because they experience bad side effects). And yes, I’ve accumulated some toxic side effects — I have tingling in my feet (neuropathy), which I didn’t have before, and more ringing in my ears, and my hemoglobin and platelet levels keep crashing. So there’s that. But what I believe happened is that the Ontario government said they wouldn’t pay for beyond Cycle 8 (which they can do because there’s no formal, published evidence to support continuing beyond Cycle 8), and there’s nothing my oncologist can do about it. I’m trying hard to be rational about this — it’s not like I’ve seen a ton of tumor shrinkage on this combo (though even just stability and no disease progression is good…), and for all I know, any shrinkage might be due more to the immunotherapy than the chemo. It just feels awful for him to have articulated more cycles as the plan moving forward, only to have him abruptly reverse course.

And both my husband I were reeling from this new plan, and so didn’t think to ask some important and basic questions, such as: when will the next scan take place? I should have a CT or MRI ASAP so we know how far the gem/cis/durva got me in terms of tumor shrinkage and so we have a baseline for knowing if I experience disease progression or not on the durva alone. Also, what is the plan if I do experience disease progression on durva alone? Also, when is the next time we will have an appointment with you? (And there is a little bit more to say about the Zenocutuzumab/Bizengri piece of the puzzle, but I will save that for another day. Essentially, not much has changed since my last post about this).

I’m trying to remind myself of the positives, and potential positives, about this new plan: that immunotherapy alone might work great for me (it does for some people — some people go a whole year without disease progression, though some only a few months); that most of my side effects have been caused by the chemo, not the immunotherapy, and so maybe I will see some pleasant changes, such as a significant increase in energy, fewer gastritis symptoms, less constipation, and my hair growing back (it hasn’t fallen out in clumps, but it has thinned a lot — so much that I really don’t like running my hand through my hair because I feel a lot of scalp); that I will only have to spend one day per month getting treatment; that in addition to the NRG1 fusion mutation, my tumor also has the IDH1 mutation, and so a drug called Tibsovo might be effective for me, and I should be able to get access to that; and finally, that, I hope, immunotherapy, maybe with or followed by Tibsovo, will buy us time to get access to and funding for the Zenocutuzumab.

Cancer itself is a FOTLAG. I’ve always hated that idea — that somehow you are supposed to learn and grow as a person through the experience of cancer. Ick. I would never deny that some people do experience significant and meaningful personal change, not just while they have cancer, but because of it. It’s the unspoken “supposed to” part that bothers me. That said, it is true that I’ve become better at staying positive and hopeful than I was before. Though maybe that’s the antidepressants. Fuck cancer.