FWIW, I had blood testing done (germline via Invitae) which first identified my ATM mutation. I had the Guardant 360 blood test before and after Whipple, which also detected the ATM mutation, but couldn't tell (based on the frequency) whether it was germline or somatic. But since Invitae already identified it as germline, that uncertainty didn't matter.
Last month, they finally sent my 20-month old Whipple tissue (and recent blood) for testing at Tempus. Their blood test also identified only ATM, but their tissue test identified a KRAS G12D mutation (at about 4%), so maybe the tissue testing is substantially more sensitive than blood (especially for solid tumors like PC). Definitely a question worth asking.
Now that I'm 21 months post-Whipple and possibly developing drug resistance, I wonder if there are even newer mutations in my tumor that have developed over time, with all that exposure to Folfirinox and GAC. (Isn't that the concept behind evolution?)
I might be getting a new tissue sample taken and tested if I get into the trial I applied for. But it seems like a needle-in-the-haystack problem searching for any of a billion possible mutations, when the best available tests only check for a few hundred of the most common ones.
Thanks for your insights and sharing your ideas and experience. I'm a couple of steps behind you. Well, one anyway. I never qualified for Whipple. I suspect I don't have a tissue sample anywhere except maybe the tiny one taken to do the initial diagnosis. I will ask whether it's worth trying to retrieve a tissue sample. My bet is they'll say no, that getting a sample would create the possiblity of releasing more cells into the abdomen. I haven't had oxaliplatin for a while, so I'll ask whether it's worth reintroducing it for a few cycles. I've never had the GAC combo, so that's an option too. I'll also ask about HIPEC, which was nixed some months ago on the grounds that it would make me really sick for not much benefit.
It's just so disappointing since I'd been responding so well to treatment. Sigh. I'm actually calmer today than I was two weeks ago when I jumped from 30 to 33. Ha! The NP said the other day that they tend to rely more on the CT scan results than the CA 19-9; the visual check is apparently more revealing. So we'll be looking for those results next week. Meanwhile, I'll be keeping on keeping on, as they say. Thanks for the chat and the advice!