My Liver Cancer Blog

This post will probably be of most interest to my readers who are cholangiocarcinoma patients and caregivers. I am now more than a year past diagnosis, and so it feels like a good time to provide a summary of my treatment thus far. I appreciate it in FB posts when my fellow cholangio people provide a summary of their situation and their treatment so far before they pose a question, and I also really, really valued this blog post in which, among other things, the author, Stephanie Kleine-Ahlbrandt, provides a summary of her five years of treatment https://stephanieka.substack.com/p/still-here-five-years-with-stage. I found that being able to read the whole treatment experience in one post was a real gift, and so I am trying to provide something similar (if not as eloquent). And, if I manage to cheat death for another year, I think I will appreciate looking back on this and adding to it.

I started experiencing symptoms in March 2025, was diagnosed June 2025, and began treatment in July 2025. I have intrahepatic cholangiocarcinoma, stage 3, which has not spread to other organs (knock on wood). My actionable biomarkers are NRG1 fusion and IDH1. The short version of my treatment is that I have done 8 cycles (6 months) of gem/cis/durva; 3 months of durva-alone; and 4 months of the targeted therapy, zenocutuzumab. I have divided the information below into subsections: diagnosis, actionable mutations, treatment, treatment decisions, and scans.

DIAGNOSIS

April 22, 2025 – Met with GP because of gastritis symptoms I’d had for about a month: burping, exhaustion, feeling comfortable only when lying down. She worried about possible gallstones.

April 24 – Ultrasound revealed a large mass on my liver. My GP was concerned, but said it might be a very large hemangioma (i.e. benign).

May 28 – Appointment with gallbladder specialist who told me I had acalculous cholecystitis (inflammation of the gallbladder, but no gallstones), but my gallbladder could not be removed because of the mass on my liver. He said he was referring me to a surgeon friend/colleague who specialized in the liver. Even though he told me this colleague was a surgical oncologist, it didn’t completely sink in that I probably had cancer. This was partly denial on my part, but also because the gallbladder specialist made it sound like he was referring me to this particular surgeon because he was a friend (so he could get me in quickly) and because he worked in the University Health Network system, which is the best network of hospitals in Toronto. He didn’t actually say that I probably had cancer. He said, “I don’t know what it is, but I don’t think it’s a hemangioma, and it needs to come out.” So, my assumption was that whatever it was, his surgeon friend would remove it. (Also, as an aside, it took way too long to get the gallbladder specialist referral, and in the end I got the referral myself through a friend. My GP totally failed in getting me a timely referral. Literally months later, when I was already in treatment, I finally received a call back from the gallbladder specialist my GP had referred me to).

At this time, even though I wasn’t definitively diagnosed, I was, in fact, deeply worried. It was around this time that I made an appointment with a lawyer to update my will. And it was around this time that I started seeing my therapist again.

June 6 – I met with the surgical oncologist who told me the growth on my liver was not a hemangioma and was probably cholangiocarcinoma. He said it was unresectable, but he would continue to monitor it with the hope that with treatment it would become resectable. He said “cholangiocarcinoma” in passing and did not explain what it was. I asked, “Are you saying I am going to be dead in 6 months?” and he replied that most patients made it through chemotherapy. I count this as the day I was diagnosed, even though the diagnosis flitted by un-spelled, barely pronounced, and unexplained.

June 12 – MRI (Tumour was 10 x 7.3 x 8.6 cm)

(NB: One thing that amazes me as I look back at my datebook from this time is that I continued to work full-time. I was Chair of my department, and had constant meetings with staff and students, annual faculty assessment letters to write, etc.)

June 17 – First appointment with the doctor who became my oncologist and who explained that he was 99% sure I had cholangiocarcinoma, but they wouldn’t know definitively until they did a biopsy, but they would start treatment in early July even without a definitive diagnosis because otherwise I would have to wait until August to start treatment!

June 18 – Colonoscopy. As everyone says, the prep for this was way worse than the actual procedure, though my gas pain was so bad I woke up during the procedure and yelled at the nurse. No evidence of cancer in stomach or intestinal tract.

June 27 – Biopsy. I agreed to extra samples being taken (7 if I recall correctly) so that thorough genomic analysis could be done and to contribute to some research projects.

ACTIONABLE MUTATIONS

NRG1 Fusion and IDH1

TREATMENT

At the start of my treatment, my alkaline phosphatase and aspartate aminotransferase were both really high. My CA19-9 has always been normal, and even on the very low end of normal, so I think it’s not a good indicator of what the cancer is doing. So I try to use other blood test markers as indicators. By early October the alkaline phosphatase was back in the normal range.

July 7, 2025 – Started first cycle of gem/cis/durva.

July 7 – December 22, 2025 – 8 cycles of gem/cis/durva. (NB – I do not have a port. I get poked each time. I don’t actually mind. The nurses all say I have great veins).

I had to delay cycle 8 by 2 weeks because I had low hemoglobin, platelets, and neutrophils. But, in general I tolerated treatment quite well. I would feel very tired and achy in the afternoons after treatment, but was usually much better by the next day. No nausea or vomiting. My appetite has remained normal throughout treatment. I had a regular stream of visitors, and normally we would do something in the morning (e.g. a museum), and I would rest in the afternoon before we went out for dinner. I went on long walks and continued to do my online fitness class even though sometimes I could only do 20 minutes before feeling exhausted and having to quit. Over the final three cycles, my hair thinned significantly, the constipation became dreadful, and I developed tinnitus and some neuropathy in my feet. After cycle 6 I also developed a blood clot in my right portal vein. And by late December my thyroid was destroyed. (I’m on blood thinners and thyroid medication).

January 5 – March 2, 2026 – 3 cycles of durvalumab only (once every 4 weeks).

April 14 – present – Durvalumab halted. Zenocutuzumab started, with an infusion every 2 weeks.

Taking the zeno has been great. The side effects are negligible. I have some itching (my scalp and back itch at night sometimes), some fatigue, occasional achiness, constipation, and weight gain. The weight gain is probably actually due to the Benedryl and dexamethasone I have to take to prevent an allergic reaction to the zeno. But aside from this I have felt better than I have since I started experiencing symptoms. I have a normal level of energy, if not my pre-sickness level of stamina. I was able to go to the Cholangiocarcinoma Foundation annual conference in Salt Lake City and to do a 3k walk/run to raise money for the hospital where I receive treatment (Princess Margaret).

TREATMENT DECISIONS

In December 2025, I wanted to continue to cycles 9 and 10 of gem/cis/durva because the treatment was working, if slowly. But my oncologist said no because of the damage it was doing (i.e. the tinnitus, I got the flu, the blood clot problem, the fact that my hemoglobin and platelet levels were not recovering). So, in January 2026 I started the durva-only once/month protocol.

In mid-October 2025, my oncologist had said that genomic analysis had indicated that my tumour had an NRG1 fusion mutation. He was excited about the possibility of trying the targeted therapy, zenocutuzumab, which had shown excellent results in a clinical trial and at that time was approved by the FDA for pancreatic and non-small cell lung cancer, but was not yet approved for cholangiocarcinoma, and was not approved at all by Health Canada (and isn’t, and probably never will be). He felt that zeno would do more to shrink the tumour than ivosidenib, another possible targeted therapy for me because of the IDH1 mutation. He described ivosidenib as a “stability” drug (though I have since met patients whose tumours shrank while on ivosidenib).

He set to work getting approval from Health Canada’s Special Access Program to prescribe the zenocutuzumab for me, as well as putting in an application to Ontario Health’s Case by Case Review program to have them fund it. Health Canada eventually approved the zeno, but in December 2025 Health Ontario rejected the application for funding. The drug manufacturer has also refused to reduce the astronomical price of the drug. But since it seemed like the best bet for shrinking the tumour and increasing the possibility of resection, we decided to go ahead with it and pay for it ourselves. It took until April 2026 to get everything in place for me to receive the zeno at a private clinic. My oncologist wanted to continue with the durvalumab at the same time, but this combination has apparently not been done before, and it wasn’t approved by the hospital.

I have not had any radiation treatment thus far. My oncologist recommends against it at this point because (1) the medical oncology approach is working to shrink the tumor and (2) the possible scarring might make surgery difficult or impossible. He remains optimistic that resection may become possible in the future. It is also the case that Y-90 is not approved in Ontario for cholangiocarcinoma (though it is for hepatocellular carcinoma). Also, histrotripsy is not approved in Canada (and my tumour is too large for that anyway), and neither is the hepatic artery infusion pump. I would have to go to the US to get any of these treatments.

July 2026 – a new application was submitted to Health Ontario’s Case by Case Review program asking them to fund the zeno. We were able to provide new evidence (e.g. since the previous application, the FDA approved zeno for cholangiocarcinoma, I have CT scans showing the zeno is working for me, and there is a hot off the press article about the safety and efficacy of zeno specifically in cholangiocarcioma patients). We are waiting for the outcome.

SCANS

MRI June 12, 2025 – tumour was 10 x 7.3 x 8.6 cm.

CT scan August 22, 2025 (after 2.5 cycles of gem/cis/durva) – tumour was 10.4 x 8 cm.

CT scan November 3, 2025 (after 6 cycles of gem/cis/durva) – tumour was 9.7 x 7 cm.

CT scan February 22, 2026 (after 8 cycles of gem/cis/durva and 2 cycles of just durva) – tumour was 8.2 x 5.6cm.

CT scan March 29, 2026 (after 3 cycles of just durva. The baseline scan before starting zenocutuzumab). Tumour was 8.5 x 5.7.

CT scan May 13, 2026 (after 2 doses of zenocutuzumab) – tumour was still 8.5 x 5.7 cm.

CT scan July 2, 2026 (after 6 doses of zeno) – tumour was 7.4 x 4.6.

NB: I wish I had a scan from the end of December, after I completed the 8 cycles of gem/cis/durva, as a baseline for knowing whether the durva-alone, which I began in Jan. 2026, was working, but we don’t have that. My oncologist seems to believe that the scans indicate the durva-alone shrank the tumour a little, but I’m not convinced. For one, the scans don’t necessarily show that. It could be that the shrinkage demonstrated in the Feb. 2026 scan was due to the final 2 cycles of gem/cis/durva, and not the cycles of durva alone. And for another, from what I’ve read and the talks I’ve attended, cholangiocarcinoma often creates an “immune desert” micro-environment, meaning there aren’t sufficient T cells around the cancer cells to attack and kill them. That said, it’s not like I don’t believe my oncologist when he says he’s had patients who have remained stable for 2 years on durva-alone. I know it works well for some patients. I wish there was more knowledge about whether/how tumour mutation impacts the efficacy of durva.