My Liver Cancer Blog

As we exited the hospital yesterday after the meeting with my oncologist, my husband said, “This is the first time in a while that we’re leaving the hospital and I’m not feeling happy.” I agreed. It’s all been good or neutral news for the last few months. But yesterday was a bit deflating.

On the “further from death” side of things, the current chemo-immunotherapy is working. My tumor did shrink a little. My oncologist said, “Of course we’d like to see more, but for some patients it just stabilizes the tumor and doesn’t shrink it at all. For you it’s working.” And he confirmed that when the radiologist’s report says the tumor is “not as vascular,” this is a good thing. It means the tumor is not getting the nutrients it needs to grow.

But we have had a setback that worries me. The company that makes Zenocutuzumab will not donate it to my hospital for me. They will ship it to Canada, but won’t donate it (apparently, not even being willing to ship it was a possibility). I think my oncologist was hoping they would donate it as a kind of compassionate exception, which he has had some success with in the past with other drugs.

Zenocutuzumab is not yet approved by Health Canada (but was fast-tracked for approval by the FDA because of the strong evidence of its efficacy), and, for all I know, I would be the only patient on it in Canada if I manage to get it. But because it’s not approved by Health Canada, the Canadian government isn’t about to pay for it (though my oncologist doesn’t anticipate any problems getting their one-time approval for me to take it). And no insurance company is obliged to cover it. And these things take a long time. For example, the drug Tibsovo (another targeted therapy that might work for me, and which is a standard second line treatment for patients in the US) is approved by Health Canada, but not yet included on the Ontario list of drugs that the province will pay for. In other words, even if Health Canada approved Zenocutuzumab immediately (and it probably won’t), it would still have to be approved by Ontario on their list of covered drugs, which could take years. And it’s very expensive, so who knows if they would ever approve it.

I think I had told myself a story, and then came to believe it, that the company might be wiling to donate the drug in order to get their foot in the door with Health Canada through a successful case study (me). And the more I read about Zenocutuzumab, the more bummed I am because there is a lot of evidence showing it is very effective in reducing tumour size (a little more than 70% of patients with the NRG fusion biomarker experienced reduction in tumor size), and the median number of months with no disease progression was a little more than 9. (For context, for some cancer drugs this number is only 3 or 4). I’ve been in touch with a patient in the US who is on Zenocutuzumab, and she’s seen remarkable reduction in her tumor size after just a few months, to the degree that she is now eligible for surgery to have her tumor removed.

And time is of the essence. At the moment I don’t have any metastases outside the liver, but if these do develop, I very likely become ineligible for surgery — the idea being that it doesn’t make sense to remove the cancerous part of the liver because the cancer cells elsewhere in the body will cause a recurrence. So my oncologist really wants me on Zenocutuzumab ASAP to reduce the size of the tumor to the point where I am eligible for surgery, and as quickly as possible so no metastases have a chance to develop.

So, the possibility that I might not be able to get access to this drug definitely makes me feel closer to death.

And my oncologist says it would also be challenging to get Tibsovo, which might not work as well anyway. And radiation is not a good option at this point because it would leave scarring on the liver that makes me ineligible for surgery. I love it that my oncologist is “all in” in terms of trying to get me to surgery rather than just trying to prolong my life. But it also feels like some options are drying up (or maybe just for now. If the strategy becomes prolonging life, and not possible cure, then radiation may become an option).

If you go back and look at my post, “Things I feel lucky about; things I worry about,” this situation is number 3 on my worry list – the drug for my tumor’s mutation (NRG fusion) exists (and it’s a good one!), but I can’t get access to it. At least at the moment. My husband and I will write some letters/emails (to our govt rep., to patient advocacy groups, etc.). Cross your fingers for me that we will be able to work something out that will get me access. (And if you have any ideas about how to proceed, please let me know).

In the meantime, I will stay on the current chemo-immunotherapy combo (cis/gem/durva), and hope that it continues to reduce the size of the tumor. Cross your fingers for this too.

In more treatment-related news, it finally happened that my platelets got too low for me to be able to continue chemo next week, but hopefully by the following week the bloodwork will show that I’m back in the normal range and can proceed. (A month or so ago I would have been upset by this mandatory pause in chemo, but right now I’m feeling some joy that I get another week off before I have to put my body through that again. I don’t have bad side effects, but I really do feel shitty in the afternoons of chemo days – a lot of muscle and joint pain). In the meantime, says my oncologist, who normally appears to be missing the crucial funny bone part of his anatomy, “No contact sports.” Though maybe he wasn’t trying to be humorous.

Strange. When I wrote my “Will I be alive…” post, I asked myself whether I would be alive for my niece’s high school graduation or the 2028 US election, but I think in the back of my mind I was kind of assuming I would be. Or, at that moment I was really struggling with it and thinking I might not be, but since then I have been more optimistic, maybe because my oncologist has been so optimistic about what Zenocutuzumab could do for me. Yesterday I had a hard realization that I truly might not be, and it made me so sad and scared. As I said earlier, psychologically and emotionally none of this is a straight line.