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The growing fight against rare but challenging cancers

Karen's tattoo of boxing gloves with a zebra pattern. The zebra is the awareness symbol for uncommon or rare diseases including neuroendocrine cancers.
Written by Nadia Radovini

It was Thanksgiving weekend 2021, and Karen thought she had a really bad chest cold: “It hurt really bad”.

She went to her family doctor, followed by x-rays, and a bronchoscopy to look inside her airways. By January 2022, Karen was formally diagnosed with grade 2 neuroendocrine cancer.

While neuroendocrine tumours can occur anywhere in the body, in Karen’s case, hers were in her lymph nodes and gastrointestinal tract.

“I hadn’t had any symptoms, I didn’t even know,” says Karen, who was 48 years old at the time; a sports mom with two teenagers in the house. “I was shocked, I didn’t experience anything, and still haven’t (besides that chest cold discomfort feeling). It never crossed my mind that I may have cancer.”

A clinical trial testing radioligand therapy (RLT)

Upon speaking to her radiation oncologist, Dr. Sten Myrehaug, Karen signed up for a clinical trial to receive radioligand therapy (RLT) as the first course of treatment.

Although neuroendocrine cancer is uncommon, its incidence is rising rapidly and few treatments exist for these patients as this kind of cancer is resistant to most therapies; making it challenging to treat.

RLT involves injecting radioactive isotopes through an IV – in this case, with the drug Lutathera – in order to target specific cancer cell receptors, and deliver more targeted and precise radiation to kill cancer cells while preserving healthy tissue.

While RLT has been used in the treatment of some other cancers in later stages of a patient’s care path, this study evaluated for the first time the use of RLT earlier as a first-line (or “up front”) treatment for patients newly diagnosed with grade 2 or 3 advanced gastrointestinal neuroendocrine tumours.

Karen started off on the “standard arm” of the trial with two intramuscular injections – one in each hip – of high-dose long-acting release (LAR) octreotide.  This is used to in order to stop or slow down the progression of tumours.

When one of her tumours started to grow in size, she was then switched to the treatment arm of the trial that offered infusions of the radioactive medication Lutathera.

Treatment took up to 30 minutes, with an IV in each arm, with the rest of the day with anti-nausea medications.

“Besides the nausea, I didn’t have any other side effects, except having to be isolated from my family for a week. I locked myself in my bedroom with my own bathroom. I had my own dishes, everything had to be washed separately, I equipped myself with my laptop and some trash magazines for the week.”

The nausea got better after each treatment and she continued working full time in healthcare administration right through without any symptoms. She finally took six months off last year to “concentrate on me” and has been back to work since October.

Asked if anything has changed for her, Karen says: “I try to walk more than I did in the past, to keep up with healthy living, getting better. Other than that, nothing has changed.”

The results: a game changer in the practice of cancer treatment

Since the multi-site trial closed, the researchers assessed the data and the results were recently published in the journal The Lancet: the RLT that Karen and other participants received showed a reduction of the risk of advanced neuroendocrine tumour progression by 72 per cent.

Karen’s response upon hearing these results? “I couldn’t be happier.”

“The results confirm the clinical benefit of earlier use of RLT for newly-diagnosed patients with these types of aggressive and life-threatening tumours,” says Dr. Simron Singh, global principal investigator of the trial, and medical oncologist and cofounder of the Susan Leslie Clinic for Neuroendocrine Tumours at Sunnybrook’s Odette Cancer Centre.

“Cancer care has traditionally been treated by surgery, drugs or radiation; RLT is a game changer in the practice of cancer treatment. While it’s technically radiation, it is given via a chemotherapy route through the blood until it reaches the precise location of the tumour. This is the next step in personalized targeted cancer therapy for patients, focused on more effectively killing cancer cells, while limiting the damage to surrounding healthy tissues.”

This past March, once she knew it was safe to do so, Karen decided to get a tattoo of boxing gloves with a zebra pattern. The zebra is the awareness symbol for uncommon or rare diseases including neuroendocrine cancers.

“This was about me fighting my cancer. It symbolized for me my strength and just knowing I’m going to beat this and fight through this. It gives me strength.”

Photo credit: Kevin Van Paassen/Sunnybrook

About the author

Nadia Radovini

Nadia Norcia Radovini is a communications advisor at Sunnybrook Health Sciences Centre.

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