Young pancreatic cancer survivor attends Jewish High Holiday services with wife and two sons

Pancreatic cancer survivor Adam Deal celebrates the Jewish High Holidays with his family.

Editor’s note: We are deeply saddened to share that Adam Deal died of pancreatic cancer in December 2020. His advocacy and support of PanCAN and the pancreatic cancer community have been an inspiration to so many people. We’ll never stop fighting on his behalf.

When Adam Deal was getting ready for his fraternity brother’s wedding in September 2017, he found himself “practically swimming” in the tuxedo he’d just had fitted a few weeks prior.

The 34-year-old senior accountant from Mayfield Heights, Ohio, didn’t think much of it at the time. “I had been working out six days a week, was on a diet and had been actively losing weight. I was under the impression that my diet was working perfectly!”

But Deal’s wife Amanda was concerned and thought he should see a doctor.

Deal’s primary care doctor and his father, also a physician, both suspected there was a problem with his gallbladder. But an ultrasound to scan his gallbladder showed abnormalities on his liver.

A follow-up CT scan revealed a shocking diagnosis: tumors all over Deal’s pancreas and liver. A biopsy confirmed stage IV pancreatic cancer.

Deal recalled, “The oncologist looked at me and said, ‘You need to get your affairs in order.’ My heart stopped.

“In a matter of 10 days, I went from believing my gallbladder was going to be removed, to being diagnosed with a terminal illness.

“The diagnosis broke my spirit.”

Pancreatic cancer patient in his 30s takes an island vacation with his wife and kids

The Deal family took a recent vacation to Tybee Island in Georgia.

But Deal had a lot to fight for. “My wife and I were new parents and had just adopted our boys out of the foster care system.” Their young kids had been in and out of several homes prior to theirs.

“All we wanted was to give our boys the best life possible. We wanted them to know they were safe and not going anywhere. I promised myself I would do everything in my power to stay strong for my boys and to continue to be there for them and my wife.”

After Deal’s diagnosis, many people cautioned him to stay away from the internet. He heeded their advice, but his wife was certain there must be some reputable and helpful information online.

“Amanda stumbled upon the Pancreatic Cancer Action Network (PanCAN) website and started doing research,” Deal said. “She contacted PanCAN, and a packet was sent to us with valuable information.

“It was the first time we felt hope.”

As this disease was new territory for Deal’s family, they needed as much guidance as possible. Starting with colleagues of his father’s at Cleveland Clinic, Deal created a team of experts who could help guide their decision-making process.

Deal initially started on combination chemotherapy and had “every possible test done” to better understand the characteristics of his tumors. A deep analysis of his tumor RNA, which is an intermediary between DNA and proteins in the cell, revealed a fusion in a gene called NRG1.

“NRG1 fusions are more common in breast and lung cancer, but they are extremely rare in pancreatic cancer,” Deal explained. “Luckily, there was a relatively new targeted therapy called MCLA-128 being tested in clinical trials in patients with breast and lung cancer that have this specific fusion.”

In March 2019, Deal began taking MCLA-128. Since then, his tumors have shrunk, and his CA19-9 blood marker has dropped dramatically.

When asked what advice he would provide to others diagnosed with this disease, Deal replied, “My message is to never give up.

“Cherish the moments, and don’t forget to live your life.”

Editor’s note: Read part 2 of Deal’s story and see how getting involved with PanCAN as a PurpleStride team captain, fundraiser and donor have impacted him.

Contact a PanCAN Patient Services Case Manager
Deal followed the Right Track, a path to precision resources and treatment from diagnosis through every treatment decision. Contact Patient Services for free support and personalized resources, including information about molecular profiling, targeted therapies and clinical trials.

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. Contact PanCAN Patient Services for personalized treatment options.