My Liver Cancer Blog

is how my oncologist described the current moment during our phone appointment this afternoon. This was the first time we’ve met with him by phone, and it felt like a gift, mostly because we never have direct communication with him unless we’re in a room with him, which has only been happening every 3 weeks, and now that I’m done with chemo, only once/month. I can send very short messages through the hospital portal to my “care team” (which is essentially the triage nurse), or I can call the triage nurse or email his assistant, but unmediated, synchronous (as we now say) communication with him has been nigh impossible outside of formal appointments at the hospital.

And he called because it’s time to make a decision: stay on immunotherapy (durvalumab) once/month until disease progression (per the Topaz clinical trial), or proceed directly to zenocutuzumab, targeted therapy for the NRG1 fusion mutation in my tumor (per the eNRGy clinical trial https://www.nejm.org/doi/abs/10.1056/NEJMoa2405008). He had initially suggested I do both, but he spoke with other oncologists in the USA who have patients on Zeno, and none of them have combined durvalumab with zenocutuzumab, and I think they kind of scared him off giving it a try. His strong recommendation is that I go directly to Zeno — try it for 3 doses, do a scan to see if it’s working, and then decide from there how to proceed. Neither the drug manufacturer nor the province has agreed to pay for it, but we are thinking about proposing a cost-sharing agreement, and my oncologist thinks that if the scan shows the Zeno is working, it will be difficult for the province and the manufacturer to deny a patient life-saving treatment. Bad optics. So, we might be on our own paying for the first 3 or 4 doses, but then get some assistance from both province and manufacturer after that. This is the hope anyway. And if the scan shows it’s not shrinking the tumor, then presumably I’ll stop taking it (I don’t know how long it takes to have an impact if it’s going to, although a couple of patients in the USA have told me they saw tumor shrinkage after 3 or 4 doses).

Getting CT scans in a timely fashion is just one hitch in this nice plan. It has become a frustration. Shrinking the tumor so that surgery is possible is, of course, the primary goal. But being able to demonstrate to the province and the manufacturer that the drug is effective (if it’s effective) is a secondary goal so that they will feel pressure to fund it if it works for me, and I don’t see how we can do that without a benchmark CT scan ASAP. Currently the next scan isn’t scheduled until March. Presumably because the imaging dept is so busy. Heavy sigh… And then, of course, I would want a scan after 3 doses (doses are infusions every 2 weeks) in order to be able to assess whether the Zeno is shrinking the tumor. I don’t want to keep paying for it if it’s not. And, if it is, I want the evidence as quickly as possible so my oncologist can use it to appeal to the province and the manufacturer. But that scan would probably need to be scheduled now for late March to make this plan work even a little. Something to raise with my oncologist when we see him next week.

I keep in mind that cholangiocarcinoma patients in the USA have also really had to fight to get access to Zeno. The few I’ve been in touch with were all initially denied by their health insurance companies, and it took many attempts by their oncologists, along with a social media pressure campaign in one case, to get the denials overturned and the drug covered. And a few had to use the strategy we are trying — pay for the first few doses out of pocket and then go to the insurance company (in our case, it would be the province, though maybe also we could try our insurance company) with the evidence that not paying for it is denying a patient a very effective, life-saving drug. I also keep in mind that approximately half of cholangiocarcinoma patients don’t have mutations that can be treated with a targeted therapy. I am very lucky that my tumor has a mutation for which there is a drug that in many cases has been very effective. And I keep in mind that many patients throughout the world, including the USA and Canada, don’t have access to the specialized kind of genomic testing that revealed that my tumor has this mutation. Many might have this mutation and never know. Welcome to the world of having a very rare cancer.

In cheerier news, I’m enjoying being off of chemo. I’m sleeping better, and without the aid of sleeping pills (knock on wood). And I feel like I have more energy and stamina (I gave a 2 hour online guest lecture yesterday for a colleague’s undergraduate class, and I wasn’t exhausted afterwards — unimaginable even a month ago). It feels good to know I have more vitality and vigor to face this fork in the road.