Michel Etchamendy didn't discover his cancer because he felt sick.

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In 2006, he was preparing for what he assumed would be a routine gallbladder surgery after a bout of gallstones. As part of the pre-op workup, his doctors ordered an X-ray. Then the plan changed quickly. Late that same day, he got a call: the surgery was canceled. When he asked why, he was told his doctor would explain.

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Michel learned there was a “giant tumor,” measuring somewhere between five and seven centimeters, sitting in his chest. Michel was stunned—not because he had ignored symptoms, but because he hadn’t had any. He felt fine. Maybe a little out of breath sometimes, but nothing that seemed to signal cancer. “I didn’t feel anything,” he said. “It seems okay.”

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Michel’s tumor wasn’t in his lungs, as it initially appeared. A surgeon explained it was next to his spinal cord—within the thoracic region of his spine—and recommended removing it without a biopsy. Michel learned that biopsies can sometimes seed chordoma cells along the biopsy tract, creating new growth where the tissue was disturbed. The safest move was to remove the mass first and identify it afterward.

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Ten days after surgery, Michel returned to the surgeon’s office. The doctor told him to sit down. What he had was something the surgeon “almost never” saw: chordoma, a rare, cancerous bone tumor that typically forms in a patient’s spine or the base of the skull. 

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Chordomas develop along the spine and skull base, arising from remnants of embryonic tissue involved in early spinal development. Michel explains it like a “factory defect”—cells that should have been absorbed into the body during development but remain dormant for decades. Then, often around midlife, they begin to grow.

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Even within chordoma, Michel’s case is unusual. Most chordomas start at the base of the skull or in the pelvis. Michel’s began in the thoracic spine, where only about 15% originate. The location, and the way his disease has progressed over time, has shaped both his symptoms and his treatment options.

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The standard approach, he learned, was surgery followed by radiation. But not just any radiation. “They will not treat this with anything other than proton beam,” he said. Conventional radiation, for his tumor, wasn’t effective enough. Michel underwent forty proton treatments, and managed to keep working through most of it.

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“I worked through the whole thing,” he said. “I was able to walk around.”

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Michel’s life before cancer was steady and physical: raised in Barstow, California—where his parents ran a dairy business—he worked as a truck driver, spent time with the railroad, and later built a long career at Southern California Edison. He worked at power plants and on experimental energy projects linked to the Department of Energy. After organizational shifts, he started over as a meter reader, moved up through planning roles, and eventually worked in technical planning and engineering design out of San Bernardino—about 70 miles from home.

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Then the cancer returned.

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After years of monitoring, doctors told Michel in 2012 that the tumor was “blowing back” and he needed another major surgery. He underwent another thoracotomy—an invasive chest operation he describes as the most brutal surgery he can imagine. The physical toll of repeated thoracotomies, more than the tumor itself, has worn him down, he says. 

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That year, his primary care physician refused to clear Michel to return to work. “You got stage four cancer,” Michel remembers the doctor telling him. 

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Michel didn’t even understand what that meant at first. Chordoma can grow slowly—until it doesn’t. It can stay quiet for years, then suddenly accelerate.

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Michel went back to his oncologist expecting a plan. Instead, he received more bad news. “We got nothing for you,” he remembers being told.

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In early 2013, Michel did what patients with rare diseases often have to do: he became his own researcher. He found a Facebook group called Chordoma Survivors. The name, he later learned, was misleading. “Everybody on there is a victim,” he said—not because people lacked resilience, but because outcomes can be grim and options limited.

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Then someone posted a message that changed his trajectory: the NIH was looking for chordoma patients for a new clinical trial targeting a protein called brachyury. Michel emailed immediately.

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At the NIH, researchers were investigating a therapeutic vaccine approach. Chordomas express brachyury, Michel explained, and in many cancers brachyury appears later, after metastasis. The idea was to “teach” the immune system to recognize that protein and attack cells expressing it.

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It also meant Michel would be flying from California to Washington, D.C. every two weeks. The NIH covered travel costs, booking flights and coordinating logistics, which made Michel’s participation possible. The schedule was grueling, he recalls, and the results were hard to interpret: chordoma’s slow growth makes it difficult to know whether a drug is working in real time. Eventually, his first vaccine trial was labeled “stable”—a clinical term meaning the cancer neither grew beyond a threshold nor shrank enough to count as a response. 

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Over the next decade, Michel participated in multiple NIH studies—including another brachyury vaccine platform, immunologic and targeted molecular therapies studies, and later a monoclonal antibody trial. Some had no effect. One seemed to help somewhat, until he needed surgery and was removed from the study.

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Along the way, his cancer spread. “I’ve had it travel to my knee in the muscle,” he said. “I’ve had it in my stomach muscles, I’ve had it on my back.” In total, he estimates he’s had 14 surgeries.

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And yet he remained, by chordoma standards, unusually mobile. Now 70, he lives in Big Bear Lake, Calif. Even with metastatic disease, he still rides an e-bike and volunteers with the local sheriff’s department as a citizen patrol member: eyes and ears, traffic control at events, welfare checks for vacation homes, and occasional high-stakes moments, like helping rescue tourists who fell through ice on the lake.

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“I’m very, very, very fortunate to not be debilitated,” he said.

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But in living with such a rare cancer, Michel has seen what happens when medical knowledge is uneven. He has learned to be skeptical when a doctor claims familiarity with chordoma. “Most doctors I talk to know zero about chordomas,” he said. “If a doctor tells me he’s seen chordomas…I really have to question you because he’s probably lying to me.”

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He remembers a moment when he developed a nodule near his knee, and sought removal with a local doctor. The surgeon told him he needed to consult colleagues—and then never called back. At the NIH, the response was immediate: he saw a surgeon on Tuesday; by Thursday, it was removed.

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Michel also witnessed how the NIH is able to share its knowledge and expertise. He experienced teams of physicians from around the country reading his scans, senior clinicians supervising, and trainees assisting—rare cases like his can become living textbooks. And sometimes, that knowledge changes care outside Bethesda.

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In one example Michel recalls, an experienced radiation oncologist initially reviewed his scans and declared them “unremarkable”—she couldn’t see the recurrence. Michel pushed for communication with an NIH physician. Days later, her decision changed: she scheduled him for radiation.

“What gives?” Michel remembers asking.

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“I’m always learning,” he recalls the doctor responding. 

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In recent years, Michel sensed the NIH’s chordoma-specific trial pipeline slowing. By 2021 and 2022, he said, he was finding fewer options tailored to his disease. In 2023, he enrolled in a trial at UCLA involving an SHP2 inhibitor and stayed on it for about a year.

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Then, in late 2024, he began a new trial at MD Anderson using cetuximab—an established drug used in other cancers but not approved for chordoma. The point of the study is to test whether a “conventional” therapy might work for this rare disease.

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The treatment is every two weeks, with travel to Houston largely on his own dime. The Chordoma Foundation helps—up to about $1,000 a month for travel and hotel costs—but the pace still adds up quickly.

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On infusion days, he flies in Monday night. Tuesday morning starts with bloodwork and a check-in with the trial doctor, followed by hours at the translational research center. He receives pre-medication with Benadryl to reduce the risk of an allergic reaction, then a two-hour infusion, followed by observation.

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Then an Uber back to the hotel. A flight home the next day. Repeat. But this trial has brought something Michel hadn’t seen before: measurable tumor shrinkage.

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“I’ve got about 25% shrinkage,” he said—calling it the best response he’s ever had in any trial. The fatigue is worse than previous therapies, but he’s still functioning—still volunteering, still moving through his days, still plotting the next two-week cycle.

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“It’s encouraging,” he said. “I’m going to keep going with it until the beginning of next year, at least, if I can.”

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Michel’s experiences with the NIH and cancer centers has made him outspoken for cancer research, clinical trials, and fundamental discovery. He is interested in protecting what kept him alive long enough to reach a trial that finally worked.

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Because for Michel, the throughline is simple: without the infrastructure of research—without the places willing to study diseases most doctors never encounter—patients like him are left with: “we’ve got nothing for you.”

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“The NIH is a first-class institution,” he said. “They’re scientists. They’re trying to find a cure.”