Tumor board surprise

Last Saturday, Andrew got pelvic and chest CTs for the first time since starting chemo in late June. (Pictured above: Andrew putting on a brave face after being asked to chug a full cup of CT contrast every 5 minutes.) Ahead of the scan, his oncologist was optimistic but did all of his usual hedging. There is also the unknown factor of how much the tumors may have grown from the first diagnostic CT in early June and when chemo started. During that time, the tumor marker blood test had jumped considerably, so it's reasonable to assume that his disease burden grew too.

The first results, the pelvic CT, posted to Andrew's NYU portal on Sunday, and the chest CT report came in on Monday. We dusted off our medical degrees, booted up ChatGPT and a calculator, and tried to decipher the radiologist's notes. Every single tumor measurement had shrunk by at least 30%, some by 40%. There were no new tumors, and it also looked like spots on the spleen and lungs that were previously thought to be metastases were actually clots from strokes. One kidney has scarring from this, but at this point appears to be working okay-ish. The pulmonary embolism and lung nodule disappeared entirely.

On Tuesday afternoon, Andrew's oncologist called to discuss what happened when the tumor board met and reviewed his case. He started out by saying that this was a "fantastic" response—one of the most remarkable he's ever seen for pancreas cancer. The board was excited, and some of the surgeons started talking about the possibility of surgery.

We were originally told that anything but chemo and some experimental maintenance drugs were totally off the table because of the size and location of his tumors and stage 4 diagnosis. Performing surgery would be like a game of Whac-a-Mole—too many tumors to get, and more would keep popping up anyway.

But the liver tumors are now much more superficial and could perhaps either be targeted by high-frequency ultrasound or radiation or even cut out. The same could be true of the pancreas tumor with a surgery called a Whipple. It's a very difficult procedure that would leave Andrew a type 1 diabetic. However, if all of this were to be successful, it seems like it would essentially dial back to stage 3 instead of stage 4. (Shooting from the hip here. No one fact check us yet.)

Our understanding is that this is basically uncharted territory for stage 4 pancreas cancer patients. The medical oncologists at the tumor board meeting argued that a surgical/radiation approach may not increase his life expectancy because he almost certainly has tiny molecular tumors that will eventually rebuild solid tumors elsewhere. On the other hand, they admit that Andrew's appears to be an unusually sensitive cancer to chemotherapy, and this more involved treatment plan has never (???) been executed in a BRCA2-positive patient. (Reminder that while Andrew's BRCA2 gene mutation is the reason he has cancer in the first place, it also makes it more responsive to treatment than non-mutated cancers.)

Where we go from here: at least another 4 months of chemo. It's more than we originally planned, but the hope is that chemo continues to kill as many cancer cells as possible before they become resistant. It's more important than ever to ensure Andrew never misses a chemo treatment. His doctors may need to get creative with therapies that help him deal with more serious side effects that are likely to develop over time, particularly neuropathy. And they'll need to make sure other obstacles, like low platelets, don't throw us off track.

At the beginning of his diagnosis, Andrew said he needed a game-changing experimental idea. Surgery and radiation after an extended course of chemo could be that. We're unlikely to get consensus from a lot of medical oncologists and surgeons about the right way to go—he's probably a terrible surgical candidate due to clots. Right now, he thinks that risk is worth it, and we'll see what the next several scans show us.

Thank you all for continuing to pray with us. At times, I have felt like hope was a dangerous feeling, but it's hard not to be encouraged by and very grateful to God for this incredible news.