The day after Christmas in 2018, Ed Moyer started to feel a little nauseous.
He didn’t think anything of it, figuring he picked up a stomach bug over the holiday at his brother’s home in Virginia Beach, Va. After another week when he wasn’t feeling any better, he decided he should see a doctor.
“I got a blood test in Virginia Beach and then flew back the next day, back to Kansas where we were living, he said. “The results came in and they said I needed to go see my family doctor and get another blood test. There were concerns.”
Next came an ultrasound – this was on his 59th birthday. That led to an MRI, which led to a CT scan. All in the span of one week.
The tests revealed that he had a mass on the head of his pancreas. It was malignant.
“It happened very quickly for me,” he said. “I didn’t have symptoms that were undiagnosed or not figured out for a while. Within about two weeks I was properly diagnosed and knew what I had. Quite a shock.”
That shock gave way to a steep learning curve. Pancreatic cancer wasn’t on his radar at all – and now he found himself faced with understanding more about the disease. Quickly.
“I had no signs,” he said. “I knew nothing about pancreatic cancer and no family history. I didn’t really know anything about it.”
In an effort led by his wife – whom he calls a “great patient advocate” -- he started to take a deep dive into everything from treatment options and potential side effects to more about the biology of the disease.
“My wife found PanCAN on a Google search right there after I got diagnosed,” he said. “We got materials, books and different things to educate us on pancreatic cancer.”
Once he knew he was a candidate for the Whipple procedure, PanCAN Patient Services also helped Ed narrow his search for hospitals and surgeons.
“We met with a few hospitals out in Kansas, and then Johns Hopkins, which is where I eventually went,” he said, adding that given his pending retirement to Virginia, and PanCAN’s recommendation to see a surgeon who does a high volume of Whipple procedures, Johns Hopkins seemed like the best fit.
Finding a Clinical Trial
When he met with the surgeon at Johns Hopkins, he and his wife also met with an oncologist who mentioned a clinical trial, which required a new round of research.
“I had heard of clinical trials, but I didn’t know what the heck they were all about,” he said.
So Ed circled back with PanCAN to learn more about clinical trials in general and the one offered by Johns Hopkins. After talking it over with his family, he decided to enroll – both because it was a good fit for him and because it would help advance science.
“You’re fighting for your life, why not do something that may help you,” he said. “And if it didn’t help you, maybe they find something that would help someone else in the future. So it was just the right thing to do.”
The clinical trial focused on an immunotherapy in combination with other drugs. He had one treatment through the clinical trial before surgery and another after the surgery, then underwent 20 chemotherapy treatments through the end of 2019. In 2020, he completed the clinical trial treatments, which required infusions as well as six vaccine shots. The plan from there was an infusion and booster shot every six months.
In January of 2022, he received some distressing news. During a regular scan, he found out that several nodules on his lungs had grown to the point where his oncology team was concerned. They decided to do lung wedge resection surgery to remove the nodules and biopsy them. He learned the pancreatic cancer had spread. After talking through multiple options, Ed decided to move forward with chemotherapy that is taken in pill form. He’s been tolerating the treatments well and is going in for regular scans and bloodwork.
Finding an Advocate, Positive People
Although his path has not been a straight line, Ed has focused on staying informed and advocating for himself.
“What was most surprising to me was there wasn’t one set of instructions,” he said. “We went to three different doctors and they had three different plans on what you could do. You have to educate yourself and pick the path that you think is best for you.”
That’s where tapping into resources like PanCAN comes into play. Now retired and living full-time in Virginia Beach, he’s grateful he found his way to Johns Hopkins and the clinical trial – which helped him get to where he is now four years after his diagnosis.
“I thought the clinical trial was great,” he said. “I think it had a positive impact in terms of how I’ve been doing. The treatment plan that I’ve gone with, the doctors I’ve seen in the clinical study, all of that has been instrumental to being able to live my life normally.”
He’s already looking ahead to explore clinical trial options that may be helpful for him, something he urges others to consider. His wife, Janet, has been by his side at every decision point.
“I think it’s helpful to have a patient advocate -- whether it’s a spouse, a family member, a friend,” he said. “Having someone there with you is extremely important and very valuable to me.”
He’s found support through other cancer survivors as well, including a good friend who gave him wise advice.
She said “‘You’ve got to surround yourself with positive people. Even though it’s easier said than done, just stay positive throughout this. Look at it as something that you can get through.’”
Friends, family and PanCAN has helped him to accomplish that goal.
“I really think there is something about knowing that people care, and are supporting you, that helps you get through this,” he said. “You’re battling physically, but the mind plays a big part in it, and I think that was helpful for me.”
PanCAN recommends consulting with a pancreatic cancer specialist. PanCAN does not recommend or endorse any particular physician or institution mentioned in constituent stories and blog posts.
Any treatments, including clinical trials, mentioned in this story may not be appropriate or available for all patients. Doctors take many things into account when prescribing treatments including the stage and type of cancer and the overall health of the patient.