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Sadly John Kennedy lost the battle to pancreatic
cancer late August, 2023. He fought a valiant
and courageous battle. Our condolences to his
wife, Simone, family and close friends.
BELOW WAS HIS STORY
A Profile of Resilience and Optimism
Pancreatic Patient John Kennedy Shares His Story
Written By Julia Brabant
Diagnosed: October 2017
Current Status: Treatment Continues
Many pancreatic cancer patients have a period of reprieve in between treatments or recurrences, but that hasn’t been the case for John Kennedy. Instead, the Boston, Massachusetts resident has undergone near-constant treatment since the day of his diagnosis, completing more than 38 rounds of chemotherapy in total. Yet, he refuses to let the condition that wreaked havoc on his body do the same to his spirit.
Considered a “tumor marker,” CA-19-9 levels, if elevated, may be a sign of pancreatic cancer. John’s CA-19-9 tests didn’t register anything unusual, though, so he returned to his daily life while continuing to experience periodic symptoms.
John found that his pain would come and go over the next few years. He recalls falling particularly ill on two overseas trips, thinking maybe he’d developed food poisoning. He also sought treatment at the emergency room at one point. There, doctors administered fluids, and yet John remained dehydrated. No one knew why.
By October 2017, John shared some of his health concerns with a colleague. He’d lost 12 pounds in about a month and was feeling a persistent dull ache in his stomach. His friend, alarmed, told him to go see his primary care doctor right then and there – despite the fact that it was late on a Friday afternoon.
John took his colleague’s advice and visited his doctor for a physical.
“What happened?” she asked, after reviewing the results of his tests. “I saw you six months ago and you looked fine.”
She ordered a “wet read,” meaning she wanted John’s testing performed and his test results produced right away. Typically, patients avoid eating or drinking for a set time before having an abdominal ultrasound, but she considered John’s case urgent.
The ultrasound revealed a large mass. The doctor suspected gallstones or another issue with his gallbladder and referred him to a Boston hospital for an endoscopy.
The endoscopy revealed a blocked bile duct. Doctors installed a stent and performed a biopsy at the same time.
“I was in the hospital bed, and in walks the doctor,” John said. “He said, ‘You have a mass. It’s cancer,’ and like that, my whole life changed.”
The doctor said the mass was about the size of a lime and wanted a team to weigh in on John’s options. There was some potential entanglement around his arteries and nerves, but his condition was also quite serious, so the physician wanted John to start treatment right away. The team recommended he begin chemotherapy using FOLFIRINOX.
While considering next steps, John spoke on the phone to a longtime friend. The friend encouraged him to get a second opinion, and John soon found himself meeting with a surgeon, oncologist and radiology oncologist at Boston’s famed Dana-Farber Cancer Institute.
“I knew right away this was my team,” John said. “I just had a feeling.”
The Dana-Farber team agreed with the recommendation to start John on FOLFIRINOX. The idea was to use the chemo meds to reverse his condition to a stage where he could have a potentially life-saving Whipple procedure. A Whipple Surgery is a highly complex surgery performed on some pancreatic cancer patients.
Doctors then determined John was a candidate for surgery and he had the Whipple procedure May 1, 2018. The surgery went well, and there was no vascular involvement and no lymph nodes affected. John took a three-month break after surgery to give his body a chance to recover.
The remaining part of his pancreas became inflamed, resulting in a bout of pancreatitis and another six months of chemotherapy. By August, there was no sign of disease in his body, and the same held true in November.
By February, 2019, doctors noticed something in his left paraaortic lymph node. John’s CA-19-9 levels had also risen from 37 to 64. While 64 may not be cause for alarm in some people, it was high for John, raising concerns. This resulted in him undergoing 12 more rounds of chemo and additional SBRT therapy in September. The spot on his lymph node showed no signs of cancer.
On June 16, 2020, a CT revealed another lymph node abnormality – a 1.4 cm mass – in about the same place. Yet, his CA-19-9 levels still appeared normal. Another seven rounds of chemotherapy and more SBRT followed, with new scans revealing that John’s condition was stable. On April 5, 2021, there was no longer evidence of metastatic disease.
John said his wife, Simone, has transitioned into a full-time caretaker – and a fantastic one at that. She slept on the couch every night during his hospital stays and spends as much time in his company as possible, even if it means nothing more than accompanying him on a trip to the grocery store.
“I can’t imagine what goes into being somebody’s caretaker,” John said. “Sure; I have to fight, but she has to fight in another way.”
He noted that he and Simone make a point not to let cancer consume their conversations, limiting their discussions about it to treatment days as much as possible.
He also said many of his close friends and family members have gone out of their way to help him since his diagnosis.
“I can’t tell you what it means to this day to have friends and family really, truly love me and support me,” he said.
John’s medical team started him on a different chemotherapy regimen. He had eight cycles of Gemcitabine and Abraxane and followed them up with yet another round of SBRT, the latter of which has gradual effects. Because the effects occur slowly, it takes time to determine the full extent of the therapy’s impact.
In January 2023, tests revealed a new spot on the tail of John’s pancreas. Spots on the tail of the pancreas are often benign, rather than malignant. John had a CT and MRI to learn more, but both tests were inconclusive, so doctors continue to monitor the area.
With his condition stabilizing and his medical treatment in good hands, John has become increasingly active within the greater pancreatic cancer community. He met Seena Magowitz Foundation Founder Roger Magowitz through a close friend and longtime foundation supporter, Tom Sleboda. In sharing his story with the foundation, he wants to make sure others know that, while CA-19-9 numbers can indicate the presence of cancer in your body, the tests are not foolproof. His numbers remained within “normal” ranges throughout his battle despite the presence of cancer in his body.
For now, he has some advice for others facing new pancreatic cancer diagnoses.
“Build a network. Build a care team,” he said. “And don’t spend your life on Google; you’ll drive yourself crazy.”