A follow up meeting with Kaiser

Last night I met with my Kaiser oncologist. He seemed encouraged by the genetics studies coming back negative for everything saying that’s predictive of a better prognosis. I asked what ‘better’ looks like to him. He said he thought second line treatment would be in the 70-80% range. I mentioned that others I’d spoken to put that number quite a bit lower, closer to 50%. “Right, those are global averages they’ve been giving you, and you’re young and strong“. Fine, I like higher.

Then I told him that we were looking at an incomplete picture, that we should be looking at this situation “end to end” and taking the second line odds along with stem cell success rates. “Yes, that’s right” he said. I told him that if I do this it looks fairly pessimistic, more like 35% overall. He said he thought my chances going through this were higher than 50%. None of this whole conversation about odds really changes much but what’s frustrating is how much digging and prodding I feel like I need to do in order to get a clear picture of what’s going on. These are VERY important decisions and I would expect my doctor to level with me about not only the immediate step ahead (what I currently get) but looking a step or 2 further out and presenting a clear picture of what success looks like, not just an intermediate step. Not sure if the motivation is to not get ahead of ourselves, or to not freak me out or something else? I also inquired about CAR-T therapy as second line treatment. He thought it didn’t make sense to go that route given the odds are still decent for standard lines of treatment. That aligns with the UCSF conversation. I’ll have a better idea after the Stanford meeting.

Turns out that in terms of referring for CAR-T treatment should second line fail, Kaiser only refers to clinical trials. This was yet another somewhat frustrating part of the conversation. This was all framed as being in the patient’s best interest because the drugs are 2nd or 3rd generation versions whereas the commercial products are, say, first generation. To which I offered that clinical trials are by definition not FDA approved and hence risky. So then we got to the real issue which is that Kaiser doesn’t want to pay for it. If it’s cost then fine – that’s a legitimate consideration. That’s different than framing it as something in the patient’s best interest. But again, I keep feeling like I need to peel back the onion 2, 3, sometimes 4 layers to get a satisfactory answer to basic questions. My head is swirling with a LOT of information and high emotion and I don’t want to be on guard to discern what a doctor is really saying to me.

And I didn’t get a straight answer to the pathology opinion either. I asked, “So did you get more eyes on the pathology report internally”? “Yes we did but I don’t think they wrote it up“. I said, “so why not”? He then bypassed the conversation saying that the Stanford pathology report is what matters here and that piece is happening. “Maybe I’m mistaken but I thought the diagnosis matters, if only for setting ourselves up for 3rd line treatment“. He then said he thought I was going too deep on a pessimistic scenario – that there was no need to go there yet. I agree to a certain point but in the end these are VERY real and somewhat imminent possibilities. All I’m looking for is satisfactory answers about next steps. That doesn’t seem unreasonable. I walked away shaking my head and thinking that my levels of comfort with Kaiser are sinking.

In attempts to simplify a complex situation below is a decision tree illustrating the various scenarios and rough odds to the degree I think I understand them (in some cases not at all). This is evolving and there are quite a few unknowns w/r/t various paths but I don’t think I need a complete picture of every possibility here, just the main ones. For example it’s unclear to me if there’s some sort of a ‘penalty’ associated with failing second line treatment then moving onto CAR-T therapy; are those CAR-T odds reduced in such a case? Also, what happens if CAR-T therapy is not successful, what then (e.g., in the case of doing this as second line treatment it seems there’s not much to fallback to)? Finally, these percentages are best guesses and could in several cases be wrong; for example I have no idea the CAR-T odds for my situation so I’m going with 60% (I’ve heard ranges from 35% to 85%). Anyway if it’s not better than that it wouldn’t be worth discussing now. I’ve marked in orange the most likely path I see myself going down for second line – that one seems about right.

Orange path is the likeliest one at this point