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The Boy Who Beat a Terminal Brain Tumor,Glioma

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Belgian boy Lucas Jemeljanova was only six years old when he was diagnosed with one of the most aggressive brainstem tumors— Diffuse Intrinsic Pontine Glioma (DIPG). This disease is one of the deadliest among brain cancers, and the majority of patients do not survive more than a year after diagnosis.

After the diagnosis, Lucas’s family took him to France, to the Gustave Roussy Cancer Centre. It was there that he joined BIOMEDE, a biological study aimed at eradicating Diffuse Intrinsic Pontine Glioma (DIPG). The study was conducted using an innovative drug, everolimus. This medication had previously been used to treat various types of cancer (breast, kidney, gut, pancreas), but it was tested against glioma for the first time in this trial. 

The lead researcher, well known French doctor Jacques Gril, emotionally recalls how he had to tell the parents that their child would soon die. However, after the treatment began, MRI scans showed that the tumor was gradually shrinking, and eventually, it completely disappeared from Lucas’s body, and has not returned to this day.

Although the tumor was no longer detectable, Dr. Gril continued the treatment  until, years later, Lucas confessed that he had stopped taking the medication on his own a year and a half earlier. This case is unprecedented, as Lucas is the first child in the world to be completely cured of DIPG.

Treating DIPG is nearly impossible. Due to the tumor’s invasion of a critical area deep within the brain, surgical intervention is not performed, and radiation therapy alone offers only palliative effects. The BIOMEDE study significantly changed this approach. All patients in the study underwent molecular biopsy, which in 10% of cases even revealed errors in the initial radiological diagnosis.

In addition to Lucas, seven other children participated in the study. Some of them experienced remission, but Lucas was the only one whose tumor completely disappeared. According to the doctor, his tumor had an extremely rare mutation, which likely contributed to the unusually positive response to the drug.

Today, scientists are attempting to study Lucas’s cancer cells in vitro. They have created artificial organoids that have similar characteristics to the boy’s cells, and through this method, they are trying to discover why everolimus was so effective.

Dr. Grill believes that it will take at least 10 to 15 years to draw definitive conclusions. However, his colleague Ziegler remains optimistic, stating: “The progress achieved in the laboratory, increased funding, and clinical trials like BIOMEDE have convinced me that we will soon be able to cure some patients.”

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