My Liver Cancer Blog

Sorry for the long silence. I’ve been deliciously on a chemo pause for 2 weeks (3 if you count the fact that the third week of each cycle I’m off chemo, but see the oncologist). The first week’s pause was due to very low hemoglobin and platelet counts — the lowest they’ve been since this all started. And the second week’s pause was because of still low blood counts, but also I got the flu. (Get your flu shots, people! I had gotten a COVID shot, but not flu. I was trying to space them out to give my body a break). I had to go to emergency because of a high fever (one of the chemo rules — high fever, go directly to emergency), and came out 10 hours later with a flu diagnosis and prescriptions for antibiotics, Tamiflu, and a Pulmicort inhaler. All those drugs and lots of rest seemed to do the trick, and I was able to enjoy a few days of feeling well and chemo-free before getting back in the chemo saddle for Cycle 8 a couple of days ago.

There’s nothing like being off chemo to make you aware that it is affecting you more than you realized. No hand tremors, no constipation, no ringing in the ears. I do worry that the time off from chemo has allowed that nasty little fucker inside me to grow, or that it has been able to rebuild more vascular infrastructure for itself, but I also recognize that low hemoglobin and platelets are not good, and that chemo pauses happen, and that overall I was pretty happy during my chemo pause, even though I had the flu.

I’m also now on blood pressure medication. I’ve always had healthy blood pressure (except for the two times when I served as a department Chair for my university, but my blood pressure went back down literally days after I finished those jobs). But chemo (and, I imagine, the stress of having cancer) can cause high blood pressure, and mine was getting really bad. My family doctor had me buy a cuff and told me to self-monitor at home for 3 weeks, but after a week I decided I had more than enough data, and I met with her again to get a prescription. Actually I first met with a resident, who seemed very forlorn to inform me that it would really be a good idea to start on blood pressure medication. I’m guessing that this is disappointing news for many patients, and that the resident was trying to forestall any resistance on my part. Imagine her surprise when I said, “Great – that’s why I came in today. Let’s get me a prescription!” So I spent a week or so feeling light-headed as my body adjusted to my blood pressure going back down to a healthy level. But, now I’m adjusted. My doctor told me that cancer patients are at increased risk for cardiac incidents, even years after the end of treatment, and “it would be a shame to go through all this cancer treatment, and then die of a stroke.” Good point.

And the Zenocutuzumab (trade name Bizengri – a lot easier to pronounce) story is a bit more complicated than I had initially described in my previous post (though that is certainly complicated enough). Yes, one problem is getting approval for compassionate use from Health Canada, and yes, probably a bigger problem is paying for it. But another problem, though maybe not here in Canada, is that my oncologist wants to use it in a way that is not explicitly approved, even by the FDA. Currently it is approved in the US for use when a patient with an NRG1 fusion mutation has seen disease progression after completing first line treatment (e.g. a systemic chemotherapy and immunotherapy regimen such as cis/gem/durva). I haven’t seen disease progression on first line treatment — in fact, I haven’t even completed the 8 cycles of first line treatment. And in fact, first line treatment has actually worked for me, at least a little bit (some shrinkage of the tumor).

But my oncologist wants to use Bizengri now, along with continuing immunotherapy, because he thinks it will be more effective than first line treatment. In fact he wanted to use it at the same time as first line treatment, but that wasn’t approved by the tumor board at the hospital (potentially too toxic, they said. But they did approve using it with immunotherapy). He wants to get me to a point where surgery may be an option as quickly and effectively as possible. As I said before, I love it that he is “all in” for getting me to the point of surgery, and is willing to draw outside the lines a bit to get there. But it is the case that if I were in the US and my oncologist wanted to try this strategy, it would not be approved by any insurance plan — not until first line treatment failed me. I’ve read that there are some trials taking place (though not with Bizengri) testing the efficacy of using targeted therapies with first line treatment — essentially asking, “Should we actually be waiting until first line treatment fails before we resort to second line treatments? Or would it be more effective to use them together?” — but the results of those trials are a long ways off.

My hope is that Health Canada will approve its use for me, that we will find a way to fund it, and that my oncologist will be able to use it the way he wants to because Bizengri won’t have been officially approved by Health Canada (with guidelines and rules and all that), just a one-off approval for compassionate use for me. I have no idea what the likelihood of this happening is. Probably not much. And I have to keep in mind that it’s also possible that Bizengri wouldn’t work as well for me as it has for other patients (or it could work just as well or better). With these drugs you just don’t know until you are on them. But anyway, it’s something to hope and strive for.

I’m looking forward to my first trip outside Canada since this started. I’m going to my parents’ house just for a couple of days for Christmas. I cannot wait. We could still cancel the trip if I get sick or if someone in my family gets sick. We’re not taking any chances. So cross your fingers for me.