Liesbeth van Boxtel’s Search for Cholangiocarcinoma Clinical Trials

Liesbeth van Boxtel knows how important it is to be an advocate for your own health. After facing a complicated cancer diagnosis, undergoing surgery, and being referred to palliative care, Liesbeth is now participating in a Clinical Trial. She has put in a lot of effort to navigate her healthcare throughout these experiences.

“I am very on top of things because it is about me and my body and my life,” said Liesbeth, who is from the Netherlands.

Liesbeth was frustrated by some aspects of the healthcare system, such as a delayed diagnosis, long waits for appointments, and a mix-up with her medication.

“I realized very quickly that I have to chase after things myself,” she said.

Liesbeth has a rare and aggressive form of cancer called cholangiocarcinoma, which is also known as bile duct cancer. Bile ducts are thin tubes that carry bile from the liver and the gall bladder to the small intestine, where bile helps digest food.

A Cholangiocarcinoma Diagnosis

Liesbeth got her bile duct cancer diagnosis in the fall of 2019. She had been feeling extremely tired for many months, and then one day while out for a walk, she noticed a small bump under her ribcage.

She went to see her primary care doctor and got an ultrasound. She was then sent for a MRI (Magnetic Resonance Imaging), a scan that uses magnetic fields and radio waves to provide detailed internal images.

A few weeks later, she was diagnosed with intrahepatic cholangiocarcinoma.

“I never expected to get cancer; I always felt good and stayed healthy,” she said. “When you suddenly find out you have cancer, it’s very shocking.”

Just before Christmas, she had a complicated surgery to remove the cancer, which had grown from her bile duct into certain liver segments close to an artery. The surgery went well and she was home in less than a week.

Liesbeth soon learned that her cancer had metastasized into her abdominal cavity, which meant she could not start chemotherapy for her intrahepatic cholangiocarcinoma treatment as planned. Her cholangiocarcinoma was metastatic cancer (cancer that has spread from its origin to other places in the body).

“The oncologists told me that from now on I would only get palliative care because they couldn’t cure me,” said Liesbeth, adding they then found two more metastases in her liver.

Liesbeth, who is almost 63, told her oncologist she was interested in learning about Clinical Trials for a possible cholangiocarcinoma treatment.

Participating in a clinical trial for cholangiocarcinoma treatment

Clinical Trials are research studies that evaluate drugs in development. When a treatment is being developed, it must be tested extensively to evaluate the safety and effectiveness of the treatment. Clinical Trials may provide patients the opportunity to access a treatment before it is available to the public, while also having the risk of uncertain outcomes and side effects.

“When you are told you have very few options and there isn’t anything else they can do for you, you realize you have to think differently,” Liesbeth said. “I wanted to check out what kind of options drugs in development could give me.”

Her oncologists identified two Clinical Trials for cholangiocarcinoma treatments in development that could possibly be a match for her.

Clinical Trials have specific criteria to determine who can participate. For example, the trial may be seeking patients of a specific age or certain length of diagnosis, while excluding patients who have other unrelated health conditions.

She enrolled in a Clinical Trial for a cholangiocarcinoma treatment, which includes both chemotherapy and immunotherapy (drugs designed to trigger the body’s immune system). The trial involves 36 cycles of treatment, and every third one is chemotherapy.

Since starting the Clinical Trial, Liesbeth has had two computed tomography (CT) scans to evaluate her cholangiocarcinoma.

Liesbeth feels optimistic about her cholangiocarcinoma treatment so far, but cautions that she doesn’t necessarily expect a good outcome.

“Of course, it’s a Clinical Trial, so we don’t know exactly how effective the treatment is, but I hope that it continues to have a positive effect,” she said.

Her search for clinical trials for metastatic cancer

Meanwhile, Liesbeth reached out to myTomorrows to learn about any other possible treatment options for the future.

Based on each patient’s medical records, the myTomorrows medical team searches Clinical Trial databases around the world to identify all relevant treatment options and compiles them into a personalized Treatment Search Report. This service is free of charge for patients and their physicians. myTomorrows can also assist with accessing drugs in development.

“Patients are busy, and they don’t always know exactly where to search for options,” Liesbeth said. “myTomorrows did the search for me, and that was really comforting.”

myTomorrows assigned her a Patient Navigator who made the process of searching for intrahepatic cholangiocarcinoma treatments quick and easy.

“She gave me a lot of support,” Liesbeth said. “I sent my medical files to my Patient Navigator, and she almost immediately gave me a Treatment Search Report.”

Liesbeth shared the report with her oncologist and will revisit it when her current Clinical Trial ends.

“The Treatment Search Report showed me that there could still be other options if my current treatment does not work,” she said of her intrahepatic cholangiocarcinoma treatment options. “I’m glad to have it as a backup.”

Liesbeth has since recommended myTomorrows to others, including two patients with metastatic cancer and another with a rare type of blood cancer. She suggested myTomorrows could help them search for Clinical Trials and other options.

“I told them that this is not only for cancer, but that myTomorrows can help people find treatment options for all different kinds of diseases,” she said.

As she navigates life with intrahepatic cholangiocarcinoma, she feels empowered by having as much information as possible.

“myTomorrows gave me so much support,” she said. “When you are in this situation, it’s very important to know that you have done all you can, and myTomorrows gave me that peace of mind.”

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