Anyone have any experience with clinical trials or immunotherapy?

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!

Hi @lizduffey, you may also be interested in these related discussions about clinical trials and immunotherapy for pancreatic cancer: https://connect.mayoclinic.org/group/pancreatic-cancer/?search=clinical+trials&index=discussions

The availability and eligibility of cancer clinical trials can be a challenge to figure out. Mayo Clinic offers a service to help you find clinical trials that may be possible for you, your cancer and eligibility. You can contact Mayo Clinic Clinical Cancer Trials to talk to a research coordinator.

CANCER-RELATED CLINICAL STUDIES QUESTIONS
https://www.mayo.edu/research/clinical-trials
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

Thank you

I am pouring through, and calling, many clinical trials right now. I am on GemAbraxane and awaiting a PET scan next week to truly see how it’s going. My last CAA19-9 was 31, 4 weeks after surgery so we shall see. While these chemo treatments may keep things at bay and allow much of us to live our normal lives a few days after infusion-immunotherapy seems to be the best direction to actually detonate these sneaky cells that can lay dormant . I am looking for these trials.
My current round ends in January so doing some forward thinking. I have made several calls and have more planned-note that some trials showing “open” are not, and be sure to ask/read about allowed conditions -ie which treatments or surgeries already experienced.
Yes-this takes time and I work full time! But I have yet to find a golden resource that KNOWS ALL and can point me in the right direction. Has anyone run across that golden group that knows all on pancreas cancer nationally????????

On immunotherapy: I started Folfirinox treatment together with clinical trial drug Nivolumab, an immunotherapy drug back in Dec. 2021. After 10 treatments with Folfirinox and 5 with Nivolumab, I had the Wipple procedure. Then remission for about 17 months. The cancer came back at the resection site. I am now on Gemcitabine and Abraxane chemo-drug therapy. Praying for best results!