Hi @lizduffey ,

Sorry to hear about the diagnosis. Folfirinox is definitely not "the only" treatment for him. It's just the first line of systemic chemo they give younger patients who are likely able to tolerate the regimen.

"Chemo" in the generic, systemic sense (to include immunotherapy and targeted therapy) might be the only option -- meaning surgery and radiation are ruled out because of the spread, but there are other traditional, cytotoxic, systemic chemo regimens based on Gemcitabine or Capecitabine with other goodies possibly mixed in (Abraxane, cisplatin, etc). Some people respond much better to those (no explanation why), so if you're not seeing good results on imaging and/or CA19-9 soon, ask if a switch to one of the other standards can be tried while you're applying for trials. If there is enough tissue from past biopsies, you might be able to get a ctDNA test (e.g., Signatera) built to monitor blood levels of tumor DNA during treatment as a supplement to CA19-9.

More current discussion about switching chemo regimens here:
https://connect.mayoclinic.org/discussion/switch-from-folfirinox-to-gemabrax-due-to-non-response/
You can't really get too far outside those SoC (Standard of Care) treatments in the US outside of a trial. I assume (hope) your husband has had the genetic and somatic DNA tests to identify any mutations he has. This knowledge will help guide treatment and trial selection/eligibility, and the sooner you have that data, the sooner you'll be able to explore options.

PanCan.org and CancerCommons.org are both very helpful when it comes to finding trials, as are the US Government's NCT page, but the website at each institution you're interested in might have more info, be more up to date, or easier to navigate. Travel requirements can play a big part in trial participation, so if Hopkins is close to you, check them out. I'm not sure about total volume, but MD Anderson and MSKCC ("Sloan") seem to be "way up there" when it comes to offering systemic therapies for pancreatic cancer.

Best wishes, and please share anything you learn with us!