Jutton’s Journey: A Hopeful Tale of Recovery

Robb Jutton faced a life-changing choice, articulated simply: “The options were do this and probably feel better, or don’t do this and die.” He opted for treatment in May, and surprisingly, only a few weeks later, he began to recover. The man who needed a wheelchair was soon walking again, playing cornhole with his family, and even back at work as a property assessor in Alton, N.H.

Now, Jutton, alongside his oncologist, Dr. Thomas Roberts from Massachusetts General Hospital, is optimistic that his progress might pave the way for better treatment choices for others with the same rare cancer. Physicians traditionally tread carefully when considering off-label drug use due to potential risks, yet, in instances like this, such use could lead to significant benefits.

The off-label approach for Jutton did not come without hazards. Dr. Roberts pointed out various risks, including severe breathing difficulties, drastic drops in blood pressure, and toxic neurological side effects that might lead to confusion. There have even been cases where patients required intensive care post-treatment, and sadly, one was reported to have passed away.

Dr. Sarimar Agosto Salgado, an oncologic endocrinologist at Moffitt Cancer Center, emphasizes caution for off-label treatments. She suggests they should generally be pursued only in specialized medical centers with a collaborative team of experts from multiple fields.

However, individuals grappling with rare diseases and sparse treatment options might find high-risk routes more appealing.

“When treating this type of cancer, there’s really not much for patients and prognoses are very poor,” added Dr. Roberts.

In April, when he first consulted Jutton, Roberts considered a drug called tarlatamab, which had been recently approved for lung cancer. Although evidence for its effectiveness against thyroid cancer was limited, there was hope based on its ability to interact with a protein common to both types of cancers. Roberts had previously tested it off-label with some patients and had seen promising initial outcomes.

Yet, the drug posed problems. Dr. Mimi Hu from MD Anderson Cancer Center mentioned that its toxicity had led to severe complications, including death in one patient. She believes the off-label treatment holds potential and deserves deeper investigation.

“Our patients deserve us coming to the table and further evaluating this possibility,” she stated.

Roberts talked to Jutton about the use of tarlatamab, making it clear that no standard treatments existed for his cancer stage and outlining the associated risks. “There are a few sort of possibilities, kind of based on a tiny bit of data and a hunch,” he remarked.

For Jutton, that was sufficient encouragement to move forward.

“We’re so on the cutting edge of what’s going on with medical science that there’s literally no data to rely on,” he noted. “They’re kind of using me as a guinea pig to learn how this stuff is working.”

Cancer had transformed Jutton’s life drastically. Once a bass player in a heavy metal band, he experienced extreme fatigue in January 2024, and by May was diagnosed with a rare form of thyroid cancer—medullary thyroid cancer, with a mere 1,000 new cases annually in the U.S.

He began treatment in New Hampshire in June 2024, initially trying a standard FDA-approved medication called selpercatinib, which aims to halt cancer growth by blocking certain proteins. Unfortunately, by December, his cancer was rapidly advancing again, and his strength was waning.

Jutton’s wife, Corrine, described his state as essentially lying in a hospital bed awaiting death.

Eventually, he was referred to Massachusetts General Hospital, where he met Dr. Roberts, who laid the option for an experimental treatment on the table.

Roberts focuses on whether treatments from more common cancers might be repurposed for rare ones by understanding their biological mechanisms. He pinpointed tarlatamab for Jutton due to its binding to the DLL3 protein, a feature found in both thyroid and lung cancer cells.

This treatment is a type of immunotherapy, whereby antibodies attaching to DLL3 bring T cells into action to kill cancer cells. “It seemed like an encouraging therapeutic option in patients that were out of options,” Roberts commented.

After assessing the risks, Jutton chose to proceed with the treatment, and his wife supported the decision.

By the second treatment, remarkable changes were apparent. Both Jutton and Corrine observed that the severe pain which had afflicted him was gone. He no longer needed the opioids he had relied on previously.

“From that moment on, he had no more pain, whereas the last year and a half has been a buildup of worsening pain,” Corrine emphasized.

His energy returned, allowing him to enjoy simple yet meaningful activities, like mowing the lawn and attending his daughter’s high school graduation—an event he initially feared he might miss.

“It’s miraculous, as far as I’m concerned,” he expressed.

Thanks to a financial assistance program, Jutton has accessed the treatment without burdening his family financially.

Other specialists treating medullary thyroid cancer acknowledge the potential of tarlatamab, although they push for more investigation to fully understand its risks. Dr. Hu suggests that thyroid cancer patients might require different dosages compared to those with lung cancer, and there’s talk of creating studies to evaluate the treatment’s timing and accessibility.

Dr. Salgado remarked on the innovative approach as “promising,” but emphasized the necessity for further studies to assess potential toxicity. Until more is known, she hesitates to recommend it broadly.

“I am encouraged by how we can bring promising therapies to patients through collaboration between expert teams, patients, and industry to continue moving forward the field,” she said.

Jutton, uncertain of how much longer he has to fight his cancer, remains committed to continuing the treatment for as long as possible—be it another few weeks or even decades.

He hopes that his journey can bring hope to others facing similar struggles. “If this crappy experience can make anything better for anyone coming behind me, then there’s a silver lining in it, as far as I’m concerned,” Jutton concluded.