With pancreatic cancer, advocating for oneself is key. Once I knew my genetics, I began my search. At the time, the two options were calling the Pancretic Cancer Action Network (#PanCAN.org) at 877.272.6226, M-F, 7:99am-5:00pm PT. I gave the case manager the details of my case, my genetic info and they did searches for trials of best match. I used clinicaltrials.gov which for the lay person can be difficult and confusing. Coming from a career in cancer and immunology research, I was familiar how to do searches.

For the lay person, I recommend letting PanCAN.org start the search and augment that using to AI assisted sites thatcher specific to pancreatic cancer trials. #LetsWinPC.org has a very good site and also will provide assistance in helping to narrow down potential trial candidates as they have partnered with the organization that helped develop their trial finder. Another group that has taken trial searches further is TriCanHealth.com. Their finder is specific only to pancreatic cancer and is orders of magnitude better that clinicaltrials.gov. After a TriCanHealth query, theycan help further refine the trial candidates.

As for participating in a trial, I was “all in”. My goal was survival and I was prepared to travel to any corner of the globe and do what was required in return for an opportunity to prolong if not save my life. My employer was understanding….I would be more productive surviving than being dead. Most trials require a a couple of hours for a clinic visit and blood work in an interval of 4 to 6 weeks. I had to travel every 6 weeks for an exam and to obtain the next six weeks supply of the investigational new drug. All of my travel expenses were 100% reimbursed and I was very closely monitored-far more than if I was receiving standard of care treatment.

June will make 13 years of my diagnosis of mixed tumor type acinar and ductal adenocarcinoma with perineural invasion, portal vein invasion, peripancreatic invasion of soft tissue, high-grade, poorly differentiated cellular dysplasia and finding out seven days after the Whipple procedure I had extensive metastatic disease throughout the liver. The first chemo regimen failed and my estimated life span was no more than 12 months. So I wasn’t even given 1% at 5 years! I knew that a clinical trial would be needed as part of the equation in servicing and I wasn’t about to complain about the time commitment and requirements of the trial. There is give and take in life and this was one of those times that required some giving. I have no regrets in having to do my own trial searches, participating in the trials and having to travel frequently to the site.

My trial in Houston was a stem cell infusion, just a single, one-time treatment. It required 3 weeks as an inpatient: 1 week before the infusion to run tests and do the chemo needed to prep for the stem cells, then 2 weeks of really close monitoring for adverse reactions. After discharge, 2 more weeks close to the hospital for further daily check-ups, and then allowed to return home. I was home for 2 weeks, then required to return for scans and blood tests, which indicated trial failure, so I was "let go" from the trial and returned to my previous chemo at home. If my blood and scan results had indicated any progress, I would have had to return at pre-determined intervals (6 weeks, then 12 weeks, then 18 weeks apart) for more scans and blood tests.
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Current treatment doesn't necessarily have to be failing in order to qualify for a trial. Just read the fine print in the exclusion/inclusion criteria for each one. Many explicitly state that you can participate if you've reached a point where you can't tolerate the current treatment even if it is working; worsening neuropathy is a classic example. Kidney sensitivity, bone marrow issues, vision, CNS, digestive, cardiac and pulmonary side effects are other valid reasons. It's a judgment call and a gamble if your current treatment is "sort of" working and "fairly tolerable" as was the case with mine. All the stars aligned just right for my trial (regarding insurance, time off work, a place to stay, a promising treatment that I actually qualified for, etc), but since the treatment didn't work, I wound up worse off than if I had just stayed on the previous SoC regimen.
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Regarding the travel requirements: They're likely different for every trial. I had other options that would've required me to be present only one day every three weeks for an infusion. They wanted me to stay close for another day in case of adverse reaction, but were fine with me flying home the second day after.
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As @stageivsurvivor mentions, there are resources like PanCan, LetsWinPC, TriCanHealth (and cancercommons.org?) who will do some of the legwork for you, but you are correct in that your current treating/consulting oncologist really has no explicit responsibility to help you find a trial. I find this to be sad and infuriating, but it is what it is...

I've had second-opinions consults at Mayo, Hopkins, Anderson, Cleveland Clinic, and Sarah Cannon, so I have a MyChart account and an "assigned oncologist" at each. When asked about trial options, none ever recommended one outside of trials going on at their own site. In fact, they didn't even seem to be aware of trials going on at other sites unless it was a trial they were already in negotiations to try and join for themselves. But being "in their system" does speed your access to them when you're searching.