The Story of Gianluca and his Glioblastoma

I open the page of a social network where I share the posts of this website and I find this message from Francesca which tells the story of her brother Gianluca. The story is full of humanity. It’s a long and deep story as the bond between Francesca and Gianluca is deep. Below is the full text of Francesca’s message without further comments.

“My name is Francesca and I want to tell you the story of my brother Gianluca. Gianluca and I are only two years apart. I am the older sister, but I have no memories of my life without him, for me we have always been two. The story of my brother and his glioblastoma is particular and unique in his way like everyone else’s.

It was 2013 and my brother who was 22 at the time began to behave in a strange way. His oddities aren’t striking and we all think it’s a passing juvenile depression.

A few years later he begins to experience jaw discomfort and so, after various tests that show that his jaw has no particular problems, the doctor decides to prescribe him an MRI to remove any doubts. It wasn’t supposed to last long and instead my father who was with him notices that they are taking long time. Until a doctor comes out of the room and calls him and shows him the presence of a mass in the right frontal lobe. Gianluca hadn’t had any physical symptoms apart from jaw discomfort, not a headache or episodes of nausea. None of us had ever thought that his strange behavior could be associated with a brain mass. Even doctors are ambiguous about this: perhaps some behaviours could have a connection with the mass but it is difficult to establish a causal link when the symptoms are psychological and behavioural.

In any case, we immediately set off, my parents and my brother go to the Besta where the doctors reassures them, since they claims that the mass is low-grade and operable, even if the images show an infiltration in the corpus callosum which is not possible to remove. Good but not great. At the end of several pilgrimages my brother decides to have surgery by Dr. Catapano who at the time worked at the Rummo hospital in Benevento. The operation goes well, Gianluca is up two days later and is out of the hospital within a week.

We are at the beginning of 2018. I remember the words of Dr. Catapano: “we have to wait for the histological to give a name and surname to the mass we have removed. If it is 1 degree we will cheer all together”. Unfortunately the histological says it is a 2nd degree, and they tell us to wait and check the residual mass in the corpus callosum to understand what to do and whether to intervene with therapies. The mass is IDH1 mutated and methylated. They advise us to do a molecular evaluation of the mass and so we rely on the Neuromed clinic. Unfortunately the re-evaluation says it is a 3rd degree: anaplastic astrocytoma. And so Gianluca begins the STUPP protocol with a queue of therapies until 2020. The resonances are stable and we are confident, perhaps we are deluding ourselves, that the disease will not recur.

We are on the threshold of 4 years since the operation, February 2022. My brother has a recurrence and is also quite large, 7 cm in the right hemisphere. This time the symptoms are there, especially at the motor level. They’re not very obvious but he’s starting to have a weakness on the left side of his body. Some doctors, whose names I prefer not to report, say they do not operate because they are against surgically treating recurrences given the very low survival rate. The words are atrocious to hear: they tell us that Gianluca would have survived for a short time anyway and we would have worsened his quality of life. Maybe we’re wrong but we decide not to listen to them. We don’t report these words to my brother and we go to Dr. Vincenzo Esposito who works at the neuromed. He is very encouraging and decides to intervene immediately. So on April 4 Gianluca has a surgery. The mass is only partially removed, it’s huge. Unfortunately my brother wakes up with left hemiplegia. Given the terrible rules to fight the COVIV pandemic we don’t see him for a month, but we are out there in the hospital every day and as soon as we are given the chance we finally see him. He is a real rock and in a month he recovers almost all the mobility on the left side. He starts working, resumes playing sports. We have some hope. The histology confirms IDH1 mutation and methylation, so Gianluca starts the metronomic temodal.

The mass remains stable until July, only 3 months. In mid-July Gianluca no longer moves his left arm. The mass has doubled and measures almost as much as before the operation. Let’s run to Dr. Gramaglia, who receives us in the middle of August and tells us to find a way to start as soon as possible a therapy with therapy. We succeed and the results are very encouraging. After the first cycle there is a significant reduction in the mass. Unfortunately it doesn’t last for long. The next resonance is much less encouraging and my brother is starting to weaken.He is slow, he does things with great difficulty. In December, the beginning of the end: two days after the control resonance my brother has 3 terrible seizures. He is hospitalized for a few days but my mother wants to take him home. We know and have been told that the disease has spread and is out of control. Gramaglia, whom I will never stop thanking for his humanity, delicacy and elegance, confirms. So on December 17 Gianluca returns home. We nurse him, we stand by him all the time as he slowly slips into a comatose state. I hope he didn’t suffer, my love. In that last month I hugged him, scrambled, kissed like never before, like he never let me do. You know how brothers do with older sisters, they want to be tough even if they are tender with good and sweet souls. Gianluca leaves us on January 21, 2023 at 7 in the morning, at the age of 31.

I miss him so much, but it’s an understatement. What I feel and what my parents feel cannot be explained in words. By sharing my brother’s story with you all, I want the lives of all these young people not to be forgotten. I was saying I have no memories of life experiences without my brother. Likewise, it is now impossible and painful for me to imagine the future without him. For me we were and always are two. I thank all of you for sharing your experiences, you have allowed us to feel less alone and I hope that by sharing Gianluca’s story, I too have helped someone feel less alone and misunderstood. Our story, like many, is a story of hope, love, tenderness, courage and strength, especially that of my brother. I want him to be remembered for his delicate yet strong soul and for the beautiful poems he wrote. A big hug to all of you.”