A New Hope

Nivolumab treatment number eight is tomorrow, and today I had another (bi-monthly?) sit down with Dr. Noonan (oncologist). I'm pretty convinced the doctors only want to see me in person now to actually get their eyeballs on me. If I look OK, I'm likely OK. If I look sick, then there's alarm bells.

Anyway, I look good, and she was pleased about that. So other than talking in general about treatment side effects, I had a couple of ad hoc questions.

• Q: If things continue to go well, what is the typical natural progression of this disease? Does it hide in the background for years?
• A: Urothelial cancer, if it's not cured by the surgery or the nivolumab, would tend to come back in the first two years after treatment. After five years, the odds fade into background noise (my interpretation on the five year stats).
• Note: I don't know when the two/five year clock starts/started. Should have asked that - next time.
• EDIT: I asked for opinions on the Bladder Cancer Sub-Reddit (I've received lots of good information there), and the consensus is that the clock starts when there is no evidence of disease - NED (so for me, after the radical cysectomy - RC). So my clock would have started in March'24.
• Q: So if it comes back, is there anything that can be done? I've been going on the premise that Nivolumab was pretty much the last hope.
• A: There is another immunotherapy, enfortumab vedotin (EV), that is showing some promise - and that would likely be the next step (should things go sideways with the current treatment).
• Q: What can you see with the monthly bloodwork I have before each immunotherapy session - does it tell you anything other than I'm OK for the next treatment?
• A: Dr. Noonan can see markers in those tests that will say things are not right. This would lead to some more diagnostics, beyond just modifying the session.
• Q: So we talked about not doing another CT scan until the end of Nivolumab? What is the schedule?
• A: We'll do a CT at the end of the current treatment (April '25) and then every six months for two years. And then every year for another three years - so a total of five years. That seems to be a typical screening for every cancer!?

So things look good right now. I feel fine, energy levels are good, and side-effects are minimal and easily handled. My next treatment is tomorrow (Nov 26) and the one after that is Christmas Eve.