The test results (a punch in the gut)

Not great news.

The first line treatment hasn’t worked. While the cancer has shrunk significantly, based on the CT/PET results it’s still there and active. It’s in 2 locations – so far as I understand these are sites that were already active. That means cells are either mutated, resistant, or maybe something else. I now need to get another biopsy scheduled to see what cell types are present. Based on what I took from the conversation with the oncologist this is what next steps look like:

  1. Complete biopsy/validate resistant cell types
    1. Biopsy – This must be done with a more invasive laproscopic biopsy (whereas before it was done with ultrasound guidance). The reason for the more invasive procedure is because of the risk of hitting nearby organs, and that the tumor is so much smaller than before, so targeting is non-trivial. The tumor was large before that they could just go in with a needle guided by ultrasound but that won’t work for this context.
    2. Analysis – I’m really not sure exactly what analysis is done on the tissue samples: pretty sure they do some ICC staining and I think FISH. Had a conversation with a friend about potential for tumor sequencing but I’m not clear if this is a) something they do, or b) if it’s even useful. But I’ll inquire as I’m curious about this.
  2. Define approach
    1. Get second/third opinions (gated by getting the biopsy done)
    2. Triangulate various opinions, pros/cons, and decide course of treatment
  3. Depending on (1, 2) but based on current thinking proceed with 2 rounds of a different chemo protocol
    1. GDP+Rituxin (the current recommendation vs. RICE, or other second-line chemo protocols). The idea is to target cells w/different drugs to bypass possible drug resistance.
      • The Oncologist claims there’s a high chance of success here (still a binary outcome)
    2. Each round will take 21 days as with RCHOP, and it will be even more intensive.
  4. Validate responsiveness with PET/CT to new chemo treatment
    1. if successful then go to (5)
    2. if not successful then try other protocols (or …?)
  5. Complete autologous bone marrow transplant (that means using my own cells)
    1. harvest my cells (this may happen before chemo above – not sure the sequencing). The purpose of this so far as I understand it (poorly) is more about replacement of my compromised bone marrow due to all the chemo exposure vs. some type of curative procedure.
    2. Do the transplant
    3. Go in daily to monitor – I think this takes several months, and I’ll be immunocompromised throughout. This would all happen at Stanford.

This whole thing, assuming it works etc, etc will take on the order of 6 months. I remain optimistic, as does the oncologist w/r/t the chances of success here (though his use of the word ‘devastating’ on the call might not have been the most prudent word choice… perhaps one day our medical AI overlords will display greater ability to induce calm regarding these types of calls).

So I’m doing all I can, taking this one step at a time and trying to stay calm/present. It’s a mental adjustment. At this point I’m focusing on tactical stuff like getting the biopsy scheduled, which is proving challenging due to the holiday. I’m not comfortable tacking on an extra 1.5-2 weeks on this whole effort as the cancer is still very aggressive. I’m pushing hard to get this done asap.

So the next part of this adventure is starting soon. More to come…