Teen’s Death Sheds Light on Rare Form of Sarcoma

By Pat Carragher - April 10, 2023

A Canadian man known on TikTok for documenting his journey to finish his bucket list after being diagnosed with cancer died last week. Harrison Gilks was 18. He was diagnosed with rhabdomyosarcoma in 2020.

“Harrison was an inspiration to many. His smile could light up a room, his laugh could cheer anyone up. He was our sunshine on a cloudy day,” Gilks’ obituary read. “He always found good in every situation and touched the lives of many with his messages of hope and encouragement through his TikTok videos, where he chronicled and shared his journey with cancer with the world.”

@harrisongilks1 Met stammer an pat maroon! Florida has been great so far! #florida #bucketlist #tampabaylighting #tampa #nhl #hockey ♬ original sound - Harrison

According to Dr. Damon Reed, an oncologist in Moffitt Cancer Center’s Department of Individualized Cancer Management, around 350 Americans are diagnosed with rhabdomyosarcoma each year.

This rare cancer has two types. The first is embryonal rhabdomyosarcoma (ERMS), which typically affects children under age 5.

“This version is pretty curable,” Reed said. “But it requires somewhere between six months to nearly a year of chemotherapy, surgery and radiation. Because of the toxicity it can have a long term effect on fertility.”

Dr. Damon Reed, Department of Individualized Cancer Management
Dr. Damon Reed, Department of Individualized Cancer Management

The second type is alveolar rhabdomyosarcoma (ARMS), more recently known as fusion positive rhabdomyosarcoma (FPRMS). This type of disease affects kids of all ages and has a very poor prognosis. It is generally considered incurable when it has spread.

“This type of cancer occurs when two genes are ripped apart and then put back together,” Reed said. “There are only about 50 cases of metastatic fusion positive rhabdomyosarcoma each year. Patients generally present with lots of disease, often in their arms, legs or in their gut. This cancer often spreads around to the lymph nodes and bones, so it generally presents rather dramatically.”

Gilks first noticed something was wrong when he was having trouble urinating. His doctors initially treated him for a urinary tract infection but were unsuccessful in fixing the problem. A subsequent trip to the emergency room revealed a grapefruit sized tumor in his prostate along with smaller tumors in his lungs and around other parts of his body. Gilks completed his first round of chemotherapy in December 2020. In June 2022, his cancer returned. This past March, Gilks shared that his cancer had spread, and his doctors told him that his time was limited.

@harrisongilks1 Replying to @tylercwatson ♬ original sound - Harrison

According to Reed, fusion positive rhabdomyosarcoma typically responds well during the initial rounds of chemotherapy, often becoming fully undetectable after six to 20 weeks.

“We have this disease with a bad outcome, but initially responds well to chemotherapy,” Reed said. “The problem is no one really knows what to do in the 94% of cases that have a relapse within three to six months of ending chemotherapy.”

Reed is leading a clinical trial studying four different strategies of chemotherapy schedules in newly diagnosed participants with fusion positive rhabdomyosarcoma. Participants can choose from:

  • Arm A - a first strike therapy
  • Arm B - a first strike-second strike (maintenance) therapy
  • Arm C - an adaptively timed therapy
  • Arm D - conventional chemotherapy

While the disease is still believed to be incurable, each arm of the trial has a shared goal to increase survival to six times longer than the current outcome.

“Getting a large team of doctors and some advocates from across the country on board for this trial has been one of the proudest moments of my career,” Reed said. “We may disagree on what the standard of care is, but when something fails 94% of the time, can you really call it a standard? The next steps are finding what we need to change and when we need to change it. The holy grail is to figure out what the resistance mechanism is that keeps allowing this cancer to come back.”

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