Cholangiocarcinoma Diagnosis
In 2019, Fred Neubauer was seen by his doctors for a kidney stone, a somewhat regular problem he had every few years. When the stone passed, Fred noticed abnormal effects, including an excess amount of blood in his urine. As a precaution, his doctor ordered an MRI scan and coincidentally found a large mass on his liver. Fred was immediately referred to a hepatologist who diagnosed him with Stage IV Intrahepatic Cholangiocarcinoma, a rare form of cancer that forms in the bile duct of the liver.
“This was news to me. I had no symptoms at all of cancer, although this is common for people with cholangiocarcinoma,” Fred recalls. By the time it was discovered, Fred’s cancer had metastasized to his vertebrae, ribs, and one side of his hips. His doctors began treatment by installing a port and beginning chemotherapy, which Fred remained on for a year. However, the chemo took a toll on Fred physically, causing his platelet count to drop significantly so he could no longer withstand treatment.
“The chemo was keeping my cancer from growing, but it wasn’t shrinking the masses at all. It was too much to keep up with,” Fred recalls.
Treating Cholangiocarcinoma
As with every type of cancer, there are many treatment options available for patients, depending on their health and how advanced their cancer is when diagnosed. For Stage I and Stage II Cholangiocarcinoma patients, the cancer is confined to the liver. If the tumor is not near the hepatic vein, doctors can cut out that portion of the liver in a process called a hepatectomy or perform a liver transplant. For more advanced stages of Cholangiocarcinoma, transplants and hepatectomies are not possible.
After his initial round of chemotherapy, Fred realized he needed a more specialized care team to help treat his cancer. He transferred his records to MD Anderson where he was advised to recover from chemo for a couple of months. After this, he began three weeks of radiation, focusing on destroying the large tumor in his liver, while preserving the rest of the organ. “Early on in my treatment I had a biopsy done which was sent off for bio-marker testing to determine which cancer mutation I have and what medications I would be eligible to take,” Fred shares. After radiation, Fred started taking a targeted therapy medication approved by the FDA that wipes out only cancerous cells. The combined treatment has been largely successful. However, Fred’s care team is considering taking him off the medication, since they worry his cancer could eventually mutate to render the drug ineffective if used for too long.
The Cholangiocarcinoma Foundation (CCF)
Fred found the Cholangiocarcinoma Foundation (CCF) first as a patient looking for resources about his cancer and for a community of other patients to connect with. Since then, he’s joined CholangioConnect, a mentor program that allows for peer-to-peer connection among Cholangiocarcinoma patients. “This program is unique because it matches mentors with patients not only based on their cancer but based on their interests and preferences so a more personal connection can be made, and hopefully a friendship,” Fred shares. “They surveyed me when I applied to learn about me and the type of support I can provide and do the same with other patients.”
Through the CCF, Fred has taken on the role of a research advocate, attending conferences to become educated about Cholangiocarcinoma and the new drugs available to treat this cancer. Recently, Fred has begun to apply for several clinical trials he’s found through CCF as his next treatment option.
Clinical Trial Enrollment
“There’s only 5,000 to 8,000 Cholangiocarcinoma patients diagnosed each year in the United States. The prognosis of a Stage IV diagnosis has been estimated as 4 months survival. I’ve been living with this cancer for 3 years, which tells you a lot about the advances in treatment and improvements in quality of life for patients,” Fred notes. “For such a small group, we are light years ahead in terms of clinical trial participation, which I am lucky for.”
Through CCF, Fred was connected to ciitizen.com, a free service that provides medical storage of all his imaging, bloodwork, and other documentation digitally. As a patient, Fred can easily allow access of his records to family members, new doctors, and even research teams of trials he is applying to join. Additionally, Ciitizen stores genetic testing from blood samples and biopsies submitted by Cholangiocarcinoma patients. When new clinical trials are available that Fred would be eligible for, her is sent a message through the platform, streamlining the process.
Fred shared that he is fortunate to have only experienced minor side effects from his treatment, allowing him to continue leading an active lifestyle. For many cancer patients, this is not the case, as extreme fatigue is common when treatment takes a physical toll on those battling Cholangiocarcinoma. “Physically I have the energy and mentally I’m prepared to participate in a study,” Fred says. However, to be eligible for clinical studies, Fred’s kidney function, liver function, and blood chemistry testing will have to meet a certain threshold. Fred is awaiting results from several studies he’s applied to, hopeful that he has qualified.
“This type of cancer is very aggressive, it’s scary. Anything I can do while I’m still able to expand and improve treatment like clinical trials, I’m all for,” Fred shares.
Although battling Cholangiocarcinoma has been challenging, Fred’s family, friends, and church community have been incredibly supportive of his journey as a patient advocate and his decision to enroll in clinical trials. “My wife is 100% on board and even works with the CCF foundation now. If I’m selected for a study, I know she’ll support me,” Fred says.
Fred’s desire to enroll in a clinical trial stems not only from the need for a new treatment option, but is also rooted in his hope to help the Cholangiocarcinoma community and contribute to medical advancement.
“I compare this process to being an astronaut. There’s a lot of brilliant people who could be astronauts, but you’re selected based on your commitment and bravery. Patients who choose to join trials are bravely going where no one has gone before them and the outcome remains unknown. Despite this, they’re willing to take that journey in the spirit of discovery,” Fred says.
To those considering enrolling in a clinical trial, Fred advises patients to educate themselves, review all their options, and get a second opinion if they’re not sure. He also encourages patients to assess themselves physically and mentally first, before speaking with a doctor. “Meeting certain medical criteria is important, but research teams need to look beyond blood work and assess individuals as a whole. If you’re thinking of joining a clinical trial, consider other factors such as your passion, mental fortitude, and the time commitment you are willing to give to a study,” Fred advises. “Make sure you are fully aware of all the risks, benefits, and what the process involves.”
Additional Resources:
https://cholangiocarcinoma.org/
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Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org
