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Noel's legacy that allows Samuel to continue living: "I'm grateful for this treatment."

Noel's legacy that allows Samuel to continue living: "I'm grateful for this treatment."

"I'm here to cure my son," Sonia told Dr. Álvaro Lassaletta , a pediatric oncologist at the Niño Jesús University Hospital in Madrid, in 2018 when she arrived in the capital with Noel , from A Coruña, where he had already been "given up on death." The little boy was only eight years old when he was diagnosed with medulloblastoma , one of the most common malignant brain tumors in children and adolescents and also one of the most aggressive . Lassaletta offered them two options: palliative care or a clinical trial. They chose the latter. The cancer went into remission for a few months, but ultimately it couldn't be. But Noel's story doesn't end there.

Before he left, the family started a fundraising campaign in Betanzos, their hometown, to fund research projects. They were so successful that they set themselves the challenge of raising €330,000. "Álvaro told us he had this trial, and we decided to fund it," Sonia recalls. For Noel, it was too late and it didn't work out, but this study his mother refers to is what has allowed Samuel, another 18-year-old teenager from Jaén, to stay alive . The results were presented this Thursday at the Niño Jesús Hospital in Madrid with some of the key figures.

This pioneering clinical trial in Spain, led by Dr. Lassaletta and funded by CRIS Against Cancer , has demonstrated the safety of an innovative therapy based on modified viruses for treating medulloblastoma, one of the most aggressive childhood brain tumors. In fact, in more than 40% of children with this type of cancer, the tumor reappears even though it was considered eliminated. Furthermore, these relapses often have a poor prognosis , with a low probability of cure.

The trial involved six boys and girls between the ages of 5 and 18 diagnosed with medulloblastoma who had not responded to any other therapy. All received eight doses of ALOCELYVIR, one per week, which is based on the use of stem cells, capable of traveling to the tumor, as a vehicle to transport "a genetically modified common cold virus that kills tumor cells," explained Dr. Lassaletta. These cells act as a Trojan horse that releases viruses directly into the tumor environment.

All patients were closely monitored to determine disease progression and potential side effects from this innovative therapy. The results showed that the carrier cells were successfully producing the virus, and no serious side effects were recorded.

At week 10, an MRI scan showed what appeared to be disease progression, but these patients subsequently had prolonged survival. "The first patient lived two more years, and the second, more than two years," the doctor recalled. "It wasn't a progression, but rather an inflammation caused by the virus that signals the tumor to attack the immune system ," he clarified.

Five of the six patients stabilized and were able to receive additional chemotherapy and radiation treatments, to which they responded positively. Dr. Lassaletta is confident in the efficacy of ALOCELYVIR because the treatments the patients received later lack evidence of such prolonged survival.

Despite the aggressiveness of their disease, two of these patients (one of them Samuel) are still alive today, 20 and 3 months after participating in the trial, with good progress.

"I thank this treatment for helping me recover and continue to do well," Samuel said during the press conference to present the results. He was accompanied by his parents, José Manuel Caballero and Lola Águila, who, very emotionally, recounted how her son was diagnosed with neuroblastoma in 2016. He recovered after 16 months of treatment, but at the age of three and a half, the tumor returned. From Jaén, he was sent to Madrid to participate in a trial, which he had to abandon due to the toxicity of the therapy, which landed him in the ICU twice.

Main image - Noel's legacy that allows Samuel to continue living:
Secondary image 1 - Noel's legacy that allows Samuel to continue living:
Secondary image 2 - Noel's legacy that allows Samuel to continue living:
José Ramón Ladra

That's when Dr. Lassaletta offered them entry into the ALOCELYVIR trial, an outpatient treatment with virtually no side effects . "Right now, we can't say he's in complete remission, but the last two MRIs show he's stable," said Samuel's mother, who called for more research resources " so no doctor has to tell you there's nothing more to do and you can go on palliative care."

Given these promising results, Dr. Lassaletta has announced that a second trial is underway with more than 20 patients with various brain tumors, in which different doses and combinations of treatments will be tested to ensure success.

Dr. Manuel Ramírez Orellana, Head of the Onco-Hematology Department and Director of the Advanced Therapies Unit at the same hospital, recalled that a patient of Álvaro Lassaletta, when he was still a resident, was the first to receive CELYVIR, the precursor to ALOCELYVIR: "In 20 years, we have continued to receive research grants, as excited as we were on the first day. It's a race; it's about improving little by little." He concluded: "El Niño Jesús is the best place for advanced therapies in children."

Lola Manterola, president of CRIS Against Cancer, emphasized that "every step we take in research means hope for many families who currently have no alternatives. At CRIS Against Cancer, we work to provide opportunities for survival for those who currently do not have them." She addressed Sonia González, Noel's mother, highlighting "the incalculable value of those who, out of pain, decide to transform their experience into hope for others."

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