Steve Merlin

The bad news: They’d encountered bile duct compression when installing a stent, suggesting a large mass that was likely cancerous. An ERCP would follow to install a temporary stent.

The good news: Steven was eligible for the Whipple procedure, and the hospital’s chief of surgery for hepatobiliary diseases was able to insert a stent using ERCP the following day and do the Whipple procedure shortly after.

Caught off-guard, Steven asked doctors if they could delay it briefly to line up help at home and otherwise prepare. His surgeon agreed.

The urgency was due to the severity of Steven’s case – he had an aggressive tumor in proximity to the portal vein. He was otherwise in ideal physical condition, making him a good candidate for a Whipple, which he had June 18, 2012.

In hindsight, Steven believes the timing of that surgery may have saved his life. His tumor’s tricky location would have eventually blocked blood flow to his liver, leading to internal leaks and, potentially, hypovolemic shock.

“That would have been my method of death,” Steven said.

Today, he sees a shift in how some surgical teams evaluate similar cases.

“It’s interesting and encouraging to see surgical and medical oncologists starting to think outside the box,” he said. “They’re starting to look at the whole package – lifestyle, mental, emotional and physical state, etc.”

It wasn’t until after a post-surgical CT scan that Steven learned that his cancer was a mixed cell tumor type a rare form known as acinar cell carcinoma and the more common ductal adenocarcinoma had metastasized to his liver. The metastasis hadn’t been detectable during the initial diagnostic scan but progressed rapidly. Because the cancer had metastasized, doctors determined he was Stage 4 – with Stage 4 patients typically not being eligible for the Whipple procedure Steven had just had.

The tumor board at the hospital recommended he begin palliative chemotherapy using Gemzar to treat the metastasis. After three months, he found out he was part of the 10% of the population that doesn’t produce the enzyme needed to break it down. As a result, treatment proved ineffective.

Steven advocated for more aggressive treatment using FOLFIRINOX. His oncologist agreed, and Steven’s tumor began shrinking significantly. While on this regimen, he saw a geneticist, and genetic tests revealed he had the germline BRCA2 gene mutation, which Steven eventually traced back to his mother’s side of the family.

His doctor said this was good news, meaning he had a “targetable mutation.” As a result, he was a candidate for a clinical trial.

Steven wound up being the first person from the United States to join this particular multi-national clinical trial – and he remains on the trial drug today, making him the longest-running pancreatic cancer patient still benefiting from the drug used in the trial.

The drug has not yet received formal approval from the U.S. Food and Drug Administration for use in treating pancreatic cancer but Steven qualifies for “Compassionate Use,” and continues to take it because his gene mutation puts him at a heightened risk for a new primary pancreatic, prostate or male breast cancer. While the precise drug Steven takes lacks FDA approval at this point, a similar drug, Lynparza (Olaparib), did secure approval from the FDA.

However, some concerns remain about the potential side effects of long-term PARP inhibitor use, especially among women who received Carboplatin commonly used to treat breast cancer. Research suggests a possible link between long-term use of this platin drug and myelodysplastic syndrome, which can potentially develop into acute myeloid leukemia, an aggressive cancer that can be fatal. In Steven’s case, though, the only side effect he’s seen is mild anemia, and he’s remained cancer-free since starting the drug in 2014.

Doctors now consider Steven to be “clinically cured,” due in part to how well his body responded to a substantial amount of chemotherapy. While some people report experiencing “brain fog” during and after chemo, Steven experienced the opposite, finding that he’s actually able to retain more information than he did prior – something he sees as an interesting side effect.

Major cancer centers typically offer cold therapy, but smaller ones usually don’t. Even eating ice pops or crushed ice in the mouth during chemo treatments with oxaliplatin can help make someone less sensitive to cold temperatures.

Steven also urges patients to select major, comprehensive cancer centers that have established programs and see high volumes of patients with pancreatic cancer.

“All pancreatic cancer specialists are GI oncologists, but not all GI oncologists are pancreatic cancer specialists,” he said. “At major cancer centers, they employ a multidisciplinary team approach, and that’s where you’re going to find pancreatic specialists with a higher level of expertise in treating pancreatic cancers and knowledge of clinical trials.”

He also encourages people with pancreatic cancer to use proactive approaches to be able to tolerate aggressive treatment and to familiarize themselves with the difference between the “NED” and “MRD” acronyms. While “NED” means “no evidence of disease,” “MRD” means “minimal residual disease,” which often remains after treatment ends.

“All it takes is one cancer cell left behind,” he said. “If your immune system weakens, that one cell can replicate, and it often is more aggressive the second time around.”

Steven also continues to monitor his own health closely, undergoing regular checkups at Penn Medicine and getting MRIs every six months. While some oncologists tell their patients they can stop having regular checkups once they hit certain benchmarks, i.e., five years of survival, Steven continues to have regular surveillance, both because of his status on the clinical trial and because he has Interductal Papillary Mucinous Neoplasms, or cysts, in the remaining portion of his pancreas.

He also continues to track ongoing developments in pancreatic cancer care and feels optimistic about ongoing research involving KRAS mutations and the breakthroughs taking place in terms of targeting them. Studies are also suggesting that cancer drugs often perform better when combined with other drugs, like the multi-drug regimens FOLFIRINOX or Gemzar + Abraxane, with more clinical trials of investigational new drug combinations planned to assess this.

And while Steven sees the positive effects of ongoing research firsthand, he also recognizes the importance of timing and surveillance. Given Steven’s family history, his blood relatives were advised to undergo regular surveillance as well. However, considerable time elapsed between his brother’s screenings, and he, too, has since been diagnosed with Stage 4 pancreatic cancer.

Despite everything, Steven feels fortunate to be a long-term pancreatic cancer survivor with the medical knowledge to help others facing similar health challenges. He’s also grateful to have found a new purpose after his own cancer battle compromised his ability to continue down his initial professional trajectory.

“I look back and think how fortunate I was in the career path I chose, and to have found my first calling in life,” he said. “Then I realized I could use my background to help other people, and now I’ve found my second calling.”

Steven continues to undergo regular surveillance and has not shown evidence of cancer since 2014.