My Liver Cancer Blog

Well, I was hoping for more dramatic results, but I’ll take what I can get. The tumor is now 7.4 x 4.6 cm. If I compare this with what I think of as our benchmark or baseline CT scan, which was done March 29 — after I finished chemo-immunotherapy, but before I started the zenocutuzumab in early April — the tumor then measured 8.5 x 5.7. So, basically 1 centimeter smaller in both directions.

I’ll admit to feeling a little disappointed. I shouldn’t. I really, really shouldn’t. I should feel delighted, and I’m working on it. I know why I feel a little let down. First, I have 3 FB friends in the USA who were on zenocutuzumab and saw more dramatic shrinkage. For example, AM saw her two large tumours shrink by about 50% after only 4 doses, and she was “converted” to operable and had surgery after 4 months. But probably hers is the miracle story (in fact, she has said that her oncologist testified to the FDA about her results, and that he regularly brings residents in to meet her so they can see the miracle patient with their own eyes). The clinical trial itself did not have dramatic results like that, or maybe a couple patients did, if I’m reading the graphics correctly. See the Fig 2 waterfall plot and tell me what it means. https://ascopubs.org/doi/10.1200/JCO-25-03128.

I wanted to be another poster child for Zeno. Picture it – AM the poster child in the USA, and me the poster child in Canada. I had fantasies that if I had results like AM’s, maybe Partner Therapeutics would give me some doses for free if I agreed to say glorious things about them and their drug. I had fantasies that AM and I would together give a “patient perspective” talk at the next Cholangiocarcinoma Foundation annual conference in Salt Lake City in 2027 about Zeno, the miracle drug. (But I’m not counting that last fantasy out just yet…).

Another Zeno patient, CK, has multiple small tumours rather than one or two big ones, and he saw his 2 largest (only 2cm to begin with) shrink by half within 6 months. So, who knows – maybe another 3 months will get me the same results. Maybe I’ll still be able to make my pitch to Partner Therapeutics to be their poster child.

I think another reason I’m a little disappointed is that I’ve been comparing my results with the results in the clinical trial, and I realized that so far I’m pretty sure I don’t qualify as having achieved a “partial response” (which is tumor reduction of at least 30%). I still fall in their stable disease category — that is, less than 30% reduction. But, at least I’ve had an objective, measurable response! So, let’s make this the goal — partial response category by sometime in Sept.

But the other main reason I’m a little disappointed is because we are paying so much for this. I was hoping for results like AM’s, with the prayer that, like her, I would become eligible for surgery and then I could stop paying for this damned (blessed) drug. In fact, upon reflection, I realize I would be quite happy with these results if I wasn’t paying for the Zeno. Take away the hit to my rapidly evaporating savings account, and I’d be delighted with this CT scan report. I’d feel like I had all the time in the world — just keep the Zeno coming, and 2cm shrinkage every couple of months is just fine. It’s the fact that we won’t be able to keep this up that makes me want dramatic results now, now, now.

But you know what? Shrinkage is shrinkage. And shrinkage means it’s working. (Even staying the same would have meant it’s working because if it wasn’t working the tumor would definitely have grown). And it probably takes a couple of months to build up in your system (unless you have AM’s miracle body). And a year ago this damn tumor was 10.5 x 8.5 cm. So, we have come a long way.

Be happy for me, people. Encourage me to feel the delight I should be feeling right now (I know, I know, all feelings are valid, blah, blah, blah…). And cross all fingers and toes that we see more dramatic results after a couple more months on zenocutuzumab.