2023-10-17 15:15:01
October 17, 2023
At six years old, Lucas was diagnosed with an infiltrative brainstem glioma, a tumor with a grim diagnosis. With survival not exceeding two years following the announcement of the diagnosis. However, six years later, Lucas is no longer under treatment and no trace of tumor is visible on the MRI. Explanations with his pediatrician, Dr. Jacques Grill, from the Gustave-Roussy cancer center.
Lucas was six years old when he was diagnosed with Infiltrative Brainstem Glioma (ITBG). An incurable disease, which affects around fifty children per year in France, whose survival is two years on average following the announcement of the diagnosis. This tumor is in fact not operable because it is infiltrative. Which means that it extends to surrounding tissues. Cancer cells mix with healthy cells, making it impossible to remove them without damaging vital nerve axes. Lucas was able to join the Biomède trial, conducted at the Gustave-Roussy Cancer Center (Villejuif) by pediatrician Jacques Grill. Three new drugs were then tested. The young Belgian benefited from one of these new treatments, which he took from the age of 6 to 11. Now aged 12, he no longer shows any trace of the disease. Interview with Jacques Grill, his pediatrician in Gustave-Roussy.
Lucas suffered from an infiltrative brainstem glioma (ITBG). Why is this tumor not operable?
Jacques Grill : Apart from radiotherapy, which calms the disease temporarily, there is no effective treatment available. Any surgical attempt would remove as much normal tissue as diseased tissue in this part of the brain. While everything that enters and leaves the brain passes through the brainstem, it is impossible to operate on this area. It is the most common brain tumor in children and it is also the one that kills the most.
You met Lucas as part of the Biomède trial that you are leading, intended to offer targeted therapy to children with GITC. Can you tell us more?
Diagnosed for years by MRI, we then succeeded, thanks to Biomède and the advances of surgeons at the Necker Enfants Malades hospital, in performing biopsies of these tumors. We thus discovered that this tumor carried a specific mutation almost every time. If this is discovered, we are then certain that it is a GITC. This mutation put us on the trail of treatments that we imagined might work. Lucas received one of three drugs (everolimus), tested in the Biomède trial. This turned out to be very interesting because it was more effective than the others and above all, with low toxicity, very easy to control. It has therefore become the standard treatment for the disease.
And how did Lucas’ tumor react?
She was extremely sensitive to everolimus, spectacularly so. We then carried out sequencing of the tumor genome. Lucas’ glioma presented the already known mutation but presented a second one. It is believed that it was this mutation that changed the course of Lucas’ disease.
How can this favorable development, the first of its kind, help you in your research?
This is currently the work of my team at Inserm. She seeks to model this alteration of the tumor, understand what happens in the cell and reproduce it in the cells of other children who do not have this mutation. The objective is to obtain this same result with taking everolimus.
No other child reacted the same way as Lucas?
Among the other patients who received the same treatment, eight others saw their disease progress much more slowly than the others. These children also present an alteration of the tumor, but not the same as that of Lucas. All are considered in remission because the tumor has not grown. At Lucas we speak of complete remission because there is no longer any trace of the tumor. It is by studying these cases, that of Lucas and those of these eight children, that we will be able to understand how we might modify these cancer cells, with drugs, to make these tumors even more sensitive to treatments.
When did you decide to stop Lucas’ treatment?
It wasn’t a decision I made, he actually forced my hand a bit. I actually wondered regarding stopping the treatment but we didn’t dare given its wonderful success. When I wanted to prescribe a prescription for the next three months, Lucas told me he still had some left. Which was impossible since I prescribed just the dose he needed each time. This meant that he did not always take his medication. We then decided with him and his parents to stop, because taking treatment without following the prescription is not effective. That was a year ago and Lucas is still doing great. So we’re starting to think he’s cured.
However, there is still one task left on Lucas’ MRI. What might it be?
It must be a scar from the biopsy because there is no evidence to indicate that it is a living organism. The MRI shows that something was there but it doesn’t look anything like a tumor. All the evidence points to it not being alive, but we’re not at the cellular level. We look at things from a long way away with an MRI…
Yet you think he is cured.
You die from a tumor like this within two years of diagnosis. In a child who has survived six years and no longer has a visible tumor in the brain, we can begin to think that we have won the game. But I don’t know any other Lucas people. I am unable to say whether the disease may recur or not. For cancers that we are used to curing, we know that beyond a certain period of time, it will never come back. But since we have never cured a cancer like Lucas’s, we do not have enough knowledge to anticipate. I don’t dare say healing, but it does take the path. For now, he has nothing left and is growing completely normally.
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Source : Gustaveroussy.fr, Interview with Jacques Grill on October 10, 2023
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Written by : Dorothée Duchemin – Edited by Emmanuel Ducreuzet
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