A 13-year-old boy has become the first person to be cured of this deadly brain cancer

A parent’s worst nightmare: Taking your child to the doctor and receiving life-changing treatment diagnosis. This adds to the heartbreak when they learn that there may be no effective treatment and all they can do is hope for the best.

Few diagnoses strike fear in the hearts of parents and doctors more than the cancer called diffuse intrinsic pontine glioma, or DIPG. Found mainly in children, DIPG is a highly aggressive brain tumor and is also fatal. less than 10 percent of children surviving more than two years after diagnosis. tumors They grow quickly and are located in extremely vital areas such as the spine and brainstem, making them extremely difficult to remove. Although young patients were treated with radiation, chemotherapy and surgery, no one survived the deadly disease. cancer.

But for the first time in history, a 13-year-old Belgian boy named Lucas Jemeljanova I beat the odds.

Diagnosed with DIPG at the age of six, Lucas’ doctor, Jacques Grill, told Lucas’ parents, Cedric and Olesja, that he was unlikely to live very long. Instead of giving up hope, Cedric and Olesja flew Lucas to France to participate in a clinical trial called BIOMEDE, which was testing potential new drugs against DIPG.

In the clinical trial, Lucas was randomly given a drug called everolimus, a chemotherapy drug that works by blocking a protein called mTOR. mTOR helps cancer cells divide and grow new blood vessels, while everolimus reduces blood flow to tumor cells and stops cancer cells from multiplying. everolimusThis tablet, a once-daily tablet, is approved in the UK and US to treat breast, kidney, stomach, pancreatic and other cancers; however, until the BIOMEDE clinical trial, it had never been used to treat DIPG before.

Although doctors were unsure how Lucas would respond to the medication, it quickly became clear that the results were good.

“After a series of MRI scans, I found that the tumor had completely disappeared,” Grill said. in an interview. Even more remarkable, the tumor has not returned since. Lucas, now thirteen years old, is considered officially free of DIPG.

Even after the tumor was gone, Grill, who heads the Brain Tumor Program in the Department of Child and Adolescent Oncology at the Gustave Roussy cancer research hospital in Paris, was reluctant to stop Lucas’ treatments. Until about a year and a half ago, Lucas was still taking everolimus once a day.

“I didn’t know when or how to stop because there was no other reference in the world,” Grill said.

Although Lucas was the only person whose tumor completely disappeared in the clinical trial, seven other children are also thought to be “long responders” to everolimus; This means their tumors did not progress for more than three years after starting treatment.

So why did everolimus work so well for Lucas? Doctors thought an extremely rare genetic mutation in Lucas’ tumor “made his cells much more sensitive to the drug,” Grill said, while the drug worked in other children because of the “biological characteristics” of their tumors.

Although everolimus is by no means a cure, the trial has provided real hope for parents and families of children diagnosed with DIPG. Doctors now need to work to better understand why Lucas’ tumor responded so well to the drug and how they can replicate these results in tumor “organoids” (artificially grown cells that resemble an organ). Marie-Anne Debily, a researcher on the BIOMEDE trial, said that from now on, “the next step will be to find a drug that also works on tumor cells.”

A. newer clinical trial tested a new immunotherapy treatment on young DIPG patients and showed promising results. Most patients’ tumors shrank, and many participants saw functional improvements in their symptoms and daily life. But only one of the 11 patients had success rivaling Lucas, a young man identified only as Drew who has been tumor-free for more than four years after receiving treatment.

Once considered a certain death sentence, for the first time there is real hope. However, there is more research and study to be done. But until then, Lucas’ doctors are excited.

“Lucas’ case offers real hope,” Debily said.

This article first appeared two years ago. Updated.

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