Friday morning I got a call from a 617 number. My phone was across the apartment and I nearly missed it. Out of breath I pick up the phone. Hello? Hi Ari it’s Caron… It was the Dr. from Dana Farber for my second opinion. She got the results through the automated ‘EPIC’ system. Wow I haven’t even connected with my own doctor about it yet. We talked for 30 minutes. Here’s the current situation:
First off she had some questions about the pathology report as there were some conflicting pieces or at least open questions. She recommended getting a second pathology report at Stanford (she reached out to a colleague there so we’ll see). Also they classified the resistant cells as ‘3a’ (called follicular) vs. the original ‘3b’. Essentially these are slower growing cells with a different profile, don’t ask me specifically how they differ as I’m not there yet. I’m still wrapping my head around what it means, exactly how many populations exist, etc. This likely won’t have implications for second line treatment but it would impact next steps if second line fails.
She mentioned that whenever first line treatment fails she gets concerned. I asked what percent of the time it fails, she said somewhere around 20-35%. But she also left the call emphasizing that I should feel like there is still hope and that I should remain optimistic. Even if it is follicular there have been lots of innovations in the past 3 years on this front. Specifically there is a new treatment called CAR-T which basically removes a patient’s T-cells and engineers them (by adding new genes that code for specific proteins) to recognize and attack the cancer. Of course this depends on what targets are available and whether the T-cells can be engineered against those, but I’m getting WAY ahead of things here. Anyway if this is follicular it seems there is no CAR-T option (at least not yet). So confirming the pathology report seems important assuming there is sufficient tissue to do that, another question.
The ‘good part’ about where things stand based on this opinion is that second line treatment is mostly standard and aligns with what I mentioned in a previous post: 2 rounds of another type of chemo; assuming that works it’s followed by high dose chemo (wiping out the stem cells) and finally an autologous stem cell transplant to repopulate the stem cells. This is still a ‘curative’ path with a decent chance of success. What’s decent? The second line treatment success rates seem to be somewhere in the neighborhood of 50%, maybe better (I’ve heard 50% to 80%) based on what the docs have told me thus far. By the way that means 20% to 50% failure rate. For folks aware of prospect theory (see the chart p.279) the latter framing is WAY more scary because we are loss averse creatures. Doctors are smart in focusing on the treatment success rates.
But regardless my anxiety level spiked after the call despite that it reinforced the likely path forward…or maybe because it confirmed it?….or maybe it’s reality sinking in that I’m signed up for at least 6 more months of treatment…or maybe it’s that having more details brings more mental overhead and uncertainty? Or perhaps the real issue stems from the overall trend that when I dig in on these conversations it not only confirms my own ignorance (that would be fine!), but our collective ignorance in treating this disease. We’re smart but still groping in the dark. For all the stats that get thrown around when it comes to making decisions we don’t get to average results over multiple treatments. We each have only one body.
I’ll discuss these results with my oncologist this evening. More to come…