Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.
From Stage 4 Cholangiocarcinoma to Cancer-Free in 12 Months: How Hepatic Artery Infusion (HAI) Changed Rick’s Trajectory
Rick B. defied the odds and triumphed over a life-threatening diagnosis.
When he was diagnosed with stage IV cholangiocarcinoma at age 62, the medical outlook seemed bleak. Rick was advised by doctors three times to prepare for the worst. Yet his resilience and determination prevailed.
The tumor had taken over 75-80% of his liver. Doctors predicted he had a few weeks, maybe a few months, left. Amidst the turmoil of what seemed like an irreversible fate, Rick’s narrative took an unexpected turn when physicians at Memorial Sloan Kettering Cancer Center (MSKCC) offered him a new form of therapy called hepatic artery infusion (HAI).
Rick embraced this revolutionary treatment—and his battle against his aggressive cancer defied expectations. His dwindling timeline expanded; he was guided towards a renewed life. Eight years later, it’s become clear that Rick significantly surpassed expectations. Now 70 years old, Rick shares:
“Because of that pump, I’m here today. It is amazing what has taken place. I walked my daughter down the aisle. I have two granddaughters I would have never seen otherwise. I play golf everyday, walk, and spend time with my friends. HAI has truly enhanced my life for the better.”
Join Patient Worthy as we delve into Rick’s astonishing journey—a testament to surpassing medical predictions and emerging triumphant against all odds—as he discusses his cholangiocarcinoma experiences, what HAI is, and why he’s so committed to raising awareness.
Rick’s Story
It all began with a surgical procedure…but not one that had anything to do with cancer.
For all intents and purposes, Rick, who had been working in the banking and financial management industry for years, was decently healthy. He underwent his yearly physicals and bloodwork, but nothing ever seemed overly abnormal.
Yet the day after this procedure, Rick found himself in immense and unexpected pain. The area around his liver ached. But why? What was going on?
Eventually, his concern brought him back to the doctors—and his symptoms prompted them to perform an MRI that day.
After carefully examining the MRI, as well as an MRI that had been taken before his procedure, doctors were shocked to discover that Rick had intrahepatic cholangiocarcinoma.
Cholangiocarcinoma, also known as bile duct cancer, forms (as the name suggests) in the bile ducts: small tubes that carry bile from the liver to the gallbladder and small intestine. There are different subtypes based on where the cancer forms exactly. Intrahepatic means that the cancer manifests in bile ducts within the liver. Symptoms may include fatigue, itchy skin, jaundice, pale stool, unintended weight loss, and abdominal pain. But, Rick says:
“I find that, talking with other patients as well, by the time the pain arrives, patients are well beyond where they should be in terms of treatment options. Early diagnosis is incredibly important because it gives individuals a better shot at life.”
Starting the Treatment Odyssey
Unfortunately, the doctors who diagnosed Rick were not fully aware of what cholangiocarcinoma was or exactly how to treat it. Rick did his own research online, but he really appreciates getting opinions from his physicians. That being said, the physicians did not feel positively about Rick’s future. He shares:
“After the consultation, I was told that I probably had a few weeks, or maybe a month or two, to live based on the tumor size and the damage it caused during its growth. From there, I went and received multiple opinions from some of the major institutions in the country. I eventually ended up in Chicago in March 2015 and started full systemic chemotherapy from a dual port. Unfortunately at the time, no doctors were talking about the hepatic artery infusion pump.”
Months later, Rick was informed by his surgeon and oncologist that the full systemic chemotherapy was ineffective. While the chemotherapy was slowing the tumor’s progression, it was not doing anything to shrink it.
Surgery, which had initially been a treatment option, was no longer an option for Rick. It seemed like the next step was radiation—but Rick wasn’t feeling overly confident that radiation would do what he needed it to do.
For the second time, Rick was told to get his affairs in order.
Then something amazing happened. The surgeon personally approached Rick and recommended that he make contact with MSKCC. The Cancer Center, the surgeon told Rick, was offering a new form of therapy—Hepatic Artery Infusion—that might be beneficial to him.
Hepatic Artery Infusion for Cholangiocarcinoma
So what is hepatic artery infusion? Intera Oncology, the developer of the Intera 3000 HAI Pump (the only FDA-approved pump for the treatment), describes the process of HAI as:
“The drug is delivered to the liver using the Intera 3000 HAI Pump, which is implanted just below the skin in the abdomen. This precise, localized delivery provides up to 400 times higher drug concentration to the tumors in the liver compared to systemic chemotherapy. The drug is administered through the hepatic artery directly to the tumors in the liver, limiting potential side effects elsewhere.”
Although MKSCC also told Rick to prepare to have his affairs in order, and told him that there were no guarantees with treatment, he found himself drawn to HAI. He explains:
“I had resolved that my time was limited. But when they showed me the treatment, the logic, the whole procedure—it made me realize that if I was going to do the next step, this is what I needed to do. It’s hard to be told that you’re going to die soon. And chemotherapy was hard. It was painful. With the pump, I felt that there was hope. And with each scan, each visit, each treatment, everything began to improve.”
In 2016, Rick had the Intera 3000 HAI pump implanted. Implanting the pump took about six hours; each subsequent visit took around 30 minutes. Rick found HAI to give him more freedom with his time than chemotherapy, which took nine hours. He also found that the pump had less side effects—like neuropathy—than chemotherapy:
“Once I got through the treatment procedure, I already felt tremendously better. I could walk again, eat, do the things I love to do. I did treatment for one year and traveled between New York and Chicago every two weeks. The tumor shrank and died. By February 2017, my oncologist told me that they were ready to resect the tumor. My tumor resection one week later was a total success. I still have the pump active in case my cancer returns, but I went from stage IV+ to being completely cancer-free for the last six years.”
The Importance of Awareness
To Rick, awareness is a crucial aspect of his story—and one which he thinks is lacking. He recalls that, when meeting the oncologist at MSKCC, she mentioned that she wished she had known about him years before to get him started on treatment earlier:
“It’s awareness that makes that happen, that connects patients and physicians. I had traveled all over the country. At the time, nobody mentioned HAI as a therapeutic option for this particular cancer. I want physicians to be aware of HAI and cholangiocarcinoma as a whole. To find potential patients well ahead of where I was. I want to make sure that it doesn’t get to the point where doctors have to tell someone that they only have weeks or a month to live because of a lack of understanding of cholangiocarcinoma.
Awareness can change someone’s trajectory. For example, I have a primary care physician. When he read my history, he canceled other appointments so he could spend more time better understanding cholangiocarcinoma. He was amazed that he wasn’t aware and wanted to learn. The diagnostic journey is frustrating, but maybe through sharing my experience, I can encourage doctors to start doing scans or bloodwork if they feel something might be amiss. One person I know was diagnosed with indigestion for months before they discovered he had cholangiocarcinoma. If something looks off, I hope doctors will stop, think, and maybe check for something unexpected.”
Lack of awareness can also have detrimental effects on patients’ journeys. Access to many innovative therapies has been limited to top cancer centers, limiting a wider understanding. By sharing his own story, Rick hopes to raise awareness of the growing pervasiveness of HAI nationwide. This therapy is available at over 50 cancer centers around the country.
Is your physician informed about HAI? Do you have cholangiocarcinoma and are wondering if HAI is an option for you? Consider reaching out to a patient or caregiver liaison from Intera Oncology. These liaisons can connect you with oncologists who are familiar with HAI to determine if this treatment could be beneficial for you.
Outside of raising awareness, Rick also mentors other individuals with cholangiocarcinoma through the Cholangiocarcinoma Foundation. He is willing to speak with anybody about Hepatic Artery Infusion and their cholangiocarcinoma journey, or offer advice. So far, Rick has connected with multiple families, patients, and caregivers, and even attended the Foundation’s conference in Salt Lake City. If you have cholangiocarcinoma and are interested in speaking with Rick, please email [email protected] and she would be happy to make that connection.
When it comes to cholangiocarcinoma, Rick wants to remind people that they are not alone. That the fight for awareness comes through unity. He leaves everyone with a last piece of advice:
“Be direct with your doctors. If your doctors aren’t giving you what you need, seek other opinions. Go somewhere bigger if you need more help. Be forward. And above all, stay positive.”
