First off I was finally able to get another opinion at UCSF setup for early next week (thanks for greasing the wheels, Mel!).
Then yesterday I got a call from the Stanford doctor that my Dana-farber connection had recommended I connect with (the one she emailed). If yesterday’s post hurt your head you would not have enjoyed this call. But I did. After about 20 minutes of listening to his perspective he’s strongly recommending I go for a clinical trial specific to CAR-T therapy as second-line treatment. Not sure how to think about bias here – are our incentives aligned? As next steps he will connect with my oncologist (who he already knows) and they’ll see if Kaiser would make the referral. Stanford would still need to run an independent pathology report and validate some of the cellular targets (CD19, CD22) and that I’m actually a candidate.
He called into question the stats I’d been given, citing less than 50% odds of second line working when taken along with the autologous transplant. Also it seems the outcome of second line isn’t always as clear as yes/no, often it’s percent response. So it’s somewhat more complicated than has been presented thus far. I must say that despite some sobering information I liked this guy instantly if only because he strikes me as a straight shooter that’s willing to go into details.
I might have been a bit dismissive based on just the information that he’s recruiting for a study. But something interesting here is that he and I seem to be on a collision course via 3 possible futures: (1) if second-line treatment through Kaiser succeeds, I would see him for the autologous stem cell transplant as that’s also his area, (2) if second-line treatment through Kaiser fails then I would likely move onto CAR-T, which is FDA approved as third-line therapy (and my understanding is it would also go through him), or (3) I do this clinical trial mentioned above as the second-line treatment.
What to think? At this point I’m triangulating opinions and taking whatever any single person tells me with giant doses of skepticism. What’s especially challenging from a patient perspective is thinking independently about these decisions, they often hinge on asking just the right question of the right person; the issue of unknown unknowns looms large. Therefore trusting one’s doctor is important. But it’s also important to not trust them too much as they have their own biases & blind spots.
The nuts and bolts here are that if I were to go down this road (and I’m not signing up for anything yet), there’s a 50/50 chance I’d get standard treatment vs. the CAR-T therapy. By standard treatment I mean I would get identical treatment as what I’d get through Kaiser – including that I could still choose the specific cocktail. All this would happen at Stanford.
I’m still trying to understand the pros/cons of the various approaches. From what I gather thus far the potential benefits to CAR-T include that the success rate seems quite a lot higher (more than double, according to him), is faster, has equal complication rates (different issues, but equal rates), avoids chemo and all the side effects, and no need for the stem cell transplant if it’s successful. While on paper it’s intuitively appealing to bypass chemo entirely and have my innate immunity kill the cancer, there are so many pieces I still need to understand before bring in any position to decide on a path.
My head is spinning and the whole thing is emotionally taxing. At this point I’m seeing this as little more than one more (possible) option to weight against standard of care second line chemo. More to come as things progress…