I only got a so-so response to 6 months (12 rounds) of Folfirinox before Whipple. No new tumors or mets during the treatment, but the primary tumor (in pancreas head) barely changed size-wise. CA19-9 trended upward slightly from mid-100's to low 200's in that period.

Since my post-Whipple recurrence (original site plus mets), I've been on Gemcitabine + Abraxane + Cisplatin since late January (20 biweekly treatments so far).

My multiple tumors have still remained about the same size. Very minor shrinkage on a few, but no new mets. Big difference is CA19-9, which was 677 at the start of treatment, came down to normal (33) 3 weeks ago for one reading, but has been hovering in the low 40's for 2 months.

All-in-all, I've found the current regiment a good bit easier than Folfirinox. Some neuropathy, but less. A little less fatigue. Biggest difference is complete hair loss.

I'm not sure why one regimen works better than the other for different people. My only deviation from a statistically "typical" population is an ATM mutation. But I wish I had switched (or gone straight to surgery) three months into my Folfirinox rather than dragging it out for 3 more.

Biopsies are only needed for some trials, not all. Different studies specify what is necessary. It may be that some combination of imaging, CA19-9, and other bloodwork is enough. If you do have a biopsy done, ask them to take as much tissue as possible so there will be enough to share with other potential trial sites. If you're doing one of the trials where they train your own cells to recognize cancer and then reinject them to fight it, you probably will need a good amount of tissue biopsied to start with.

I spoke with the folks at https://storemytumor.com/ a couple weeks ago. They have a service where they will store as much tissue as you can send them. It's frozen slowly so that it can be revived into a "live" state for use later. Not cheap, but an option.

The last surgeon I spoke with said he'd want me off chemo for 4 weeks before removing any tumors via an open or laparoscopic biopsy, more to ensure proper healing than "cleanup" for a study. But there was one tumor near my belly button he could have sample percutaneously with an 18-gauge core biopsy need and local anesthetic, with no need to stop chemo.

If it's been a while since your original biopsy, another one might not hurt just in case the tumor has mutated since then. Maybe the percutaneous approach would work for you as a quick and affordable way to get it done before starting new chemo. Starting any new chemo will probably disqualify you from certain trials, but that's just a sad fact of life. I wouldn't delay resumption of systemic chemo too long, as the PC can spread really, really fast without it.

There are several trials going on involving CAR T-cells and Natural Killer cells that are open to people currently on chemo, as long as your blood/DNA have all the right flavors.