Emanuele’s Story

Emanuele’s Story

9 August 2019 1 By Roberto Pugliese

I am the father of Emanuele and Leonardo, two wonderful children, the best children that a father could ever wish … good at sports, good at school and socially active. We are in February 2018, Emanuele is a basketball player, he has just enrolled in management engineering in Udine and is studying to prepare the first exams.

He informs me that he has a strange tingling in his left hand. After a few days the tingling persists. We decide not to underestimate the symptom and begin to do some investigation. A rapid internet search seems to be the possible causes: cervical hernia, heart problems, a brain injury, multiple sclerosis. Considering that he is an athlete, we exclude the first one and we do an MRI from which it does not appear that much, but sufficient according to the GP to confirm the possible hernia to be treated with some physiotherapy. I am leaving for the United States, reassured, I am going to do the Singularity University EP. We are in March. Emanuele got worse and now the tingling affects the forearm and left leg too. It seems clear that physiotherapy and the possible diagnosis are probably not correct. We go on a neurological visit and the neurologist claims that Emanuele is probably somatizing. This puzzles me because knowing Emanuele does not seem to me to be depressed even though being an athlete he certainly suffers from not being able to move freely and run. I decide to go privately to do a brain resonance. It is April 4th and the radiologist tells us that he has found two lesions about 3 and 6 cm in diameter that certainly explain Emanuele’s symptoms. He also advises us to go to Udine where a team of neurosurgeons operates, headed by a certain Prof. Miran Skrap, according to all a luminary in the field. On April 5th we are in Udine where they decide to immediately to take in Emanuele. On April 7, Emanuele has an epileptic attack. They decide to do a biopsy already on April 9 to understand what it is about and decide how to proceed. A few days later the results of the biopsy arrive, which speak of a medulloblastoma in an abnormal area. On April 18th, 2018 Emanuele is operated. The operation goes fine. However, only one lesion is removed, the one located in the region of the right motor control because intervening on the second much deeper lesion, in the area of ​​functional transport would risk leaving Emanuele hemiplegic. Emanuele immediately begins its rehabilitation. Unfortunately, after the epileptic attack he can no longer move the left side of the body and has to use a wheelchair. The standard protocol provides radiotherapy and chemotherapy after the fifth week from surgery in order to reduce the risk of recurrence and treat the second lesion. The biopsy of the operation arrives after a couple of weeks and unfortunately is different from the first and speaks of glioblastoma multiforme Grade IV Wild Type. The prognosis is totally different. We are no longer talking about healing chances. The average life expectancy is 15 months from the diagnosis. We do not despair because we know that every cancer is a different history. I decide to unleash all my knowledge. It seems that the problem with this brain tumor is recurrence but they tell us that a research center in Cologne in Germany has a vaccine that can do miracles. We begin to hope again.

We decide to proceed by degrees. They tell us that traditional radiotherapy has side effects that seem ill-suited to a young man like Emanuele. In fact, traditional radiotherapy uses confluent photon beams that interact with the cells of the human body along the entire trajectory. The highest effect, of course, is where there is a convergence of beams but a bit of energy is also transmitted around a non-negligible area, potentially creating other damages. They tell us that instead proton therapy using heavier particles interacts only where the particles end their run so it is much more precise and should have fewer side effects. At the moment there are only 2 centers in Italy where proton therapy is practiced and brain tumors are treated. We visit both of them and in the end we decide to go to Trento where we are welcomed with greater empathy. The center seems more recent.

In the meantime, Emanuele continues to do physiotherapy in Udine at a specialized center and is very committed to recovering the movement of his leg and left arm. In basketball they called him the warrior and we begin to understand why … he doesn’t give up and he sets himself continuous goals of improvement of the mobility that he reaches one after the other.

The center of Trento is out of the region and it is necessary to have the authorisation of the local healthcare government body: after some troubles we get it.

Everything seems to be going right. From some time we have been paying attention to Emanuele’s diet by eliminating sugars to avoid feeding the tumor and salt, given that Emanuele takes cortisone to reduce cerebral edema.

In Trento we perform examinations including contrast resonances, PET, visits to the proton therapy center to plan the treatment. We find that the lesion that has not yet been treated has grown and needs to be treated soon. We find accommodation and begin the combined treatment of proton therapy and chemotherapy. They also offer us to continue the rehabilitation in Pergine, near Trento, in a rehabilitation clinic. Emanuele faces everything with motivation and fortitude. The chemotherapy creates to Emanuele a single episode of sense of vomit and therefore seems manageable. There will be 33 sessions of proton therapy in which the unoperated lesion will be treated and also the operated one plus a surrounding area to both to reduce the likelihood of recurrence. The treatments goes from Monday to Friday so we often manage to return home for the weekend. Rehabilitation seems to work and improvements are slow but constant.

When we return home we also manage to go fishing, Emanuele’s second great passion after basketball. It’s not easy because from the wheelchair we have to help Emanuele get into the boat and when we get back we have to go back in the wheelchair. Seeing Emanuele happy to fish is a priceless reward.

The treatment ends at the end of July and the control resonances seems good.

Given the high severity of glioblastoma we know that if we want to heal Emanuele it is necessary to use experimental therapies.

A few months earlier we presented the case to the Besta neurological institute in Milan. We were asked to send slides with samples of the biopsy to evaluate the opportunity for inclusion in Trials that were in progress in the United States. However, we have never received concrete answers through this channel.

We didn’t like the idea of ​​the Trials. Trial means studies in which some patients are given the new drug, others a placebo and in some cases others the traditional drug in order to understand if the new drug actually has any advantages. The choice of the patient is causal for which it is really a lottery.

I begin a search through my network of contacts. We contact Mayo Clinic and MD Anderson institutes in the United States and the Puhua International Hospital in China. Everyone tells us that at the moment the most effective method seems to be the one used at the IOZK institute in Cologne, Germany. Life expectancy appears to be 5 years and, in 5 years, things can happen so we decide to proceed in that direction. Some friends put us in touch with other patients who have been to the IOZK with surprising results.

We find out that IOZK is a private clinic and that complete treatment can cost tens of thousands of euros. Whatever the amount, we are willing to make any sacrifice for the good of Emanuele.

We find, however, that if a specialist is able to certify that the treatment offers greater chances of recovery and that in Italy there is nothing like it, the healthcare governing body can refund up to 80% of the cost of the treatment.

We are looking for a specialist to whom we bring all the relevant documentation (such as the list of publications on the glioblastoma multiforme of IOZK – Oncological Immunotherapy Center of Cologne). IOZK performs oncological immunotherapy and has a vaccine developed from the patient’s dendritic cells that are taught how to attack the specific tumor. The specialist approves the treatment and after a few weeks the referring healthcare governing body gives us the go-ahead.

The first visit to Cologne give us a nice impression. A doctor who will follow Emanuele establishes a relationship of trust with us almost immediately.

Considering that the traditional treatment now includes 6 cycles of one week of Temozolomide followed by a 3-week break and that is not possible to move to experimental therapies, if the failure of traditional therapies is not decreed, we are suggested to combine traditional therapy with 3-day immunotherapeutic treatment cycles with oncolytic viruses and hyperthermia. We will switch to the vaccine only at the end of these therapies.

It is August and we are waiting for the control resonance 30 days after the conclusion of proton therapy.

The resonance confirms that the tumor mass has been reduced considerably and the same doctors of the proton therapy are enthusiastic about it. There are only 3 small spots to watch, but they appear to be within the treatment area near the lesion that was removed during surgery. At this point we are all happy, we enjoy the end of summer with some fishing trips, some party with friends and we are preparing for the next treatment cycles. Our only concern is to find ways to intensify rehabilitation to recover as many features as possible.

The next control resonance is expected in November but IOZK asks us to anticipate it in October, considering that we are fighting against a glioblastoma.

We are in September, we begin the first 2 cycles of combined therapy and the first trips to Cologne. It goes on. Physiotherapy and the rest of the therapies seem to work and Emanuele, who took a few steps with the tripod from August, continues to improve his mobility.

Emanuele is also supported by friends who continue to come and visit him. He is very positive and plans his future: he also manages to help as second coach a mini basketball team.

We arrive in October, returning from the third trip to Cologne, the second cycle of immunotherapy with oncolytic viruses and hyperthermia. Emanuele has a bit of a headache but he had had others in the last few months so we don’t worry.

We leave for Trento to go and do the control resonance.

There is a lot of expectation given Emanuele’s progress but unfortunately a bad surprise awaited us. The lesion treated with proton therapy was further reduced but a cerebral hemorrhage was underway in the area related to the surgically operated lesion. Emanuele could not move from the hospital until the bleeding was reduced and stabilized.

In agreement with the IOZK doctor who follows Emanuele, we establish that most likely there is a recurrence and this is what caused the bleeding. Traditional therapy therefore does not seem to work. As soon as it will be possible to transport Emanuele to Cologne we will pass to immunotherapy with the vaccine.

Emanuele is a bit demoralized also because gradually the symptomatology becomes more complicated and Emanuele begins to speak with difficulties.

A few weeks go by, Emanuele returns home and then we rent a camper van to go to Cologne. Emanuele, in fact, after the cerebral hemorrhage cannot travel by plane. With great hopes we make this long journey from Ruda, in the province of Udine, to Cologne. We reach the destination after about 15 hours. The preparation of the vaccine from the first sample, to the development, to the injection takes about 10 days. Emanuele is doing quite well and we take the opportunity to do some trips around Cologne. We return to Italy.

We must wait 3 weeks before we can do the second vaccine cycle with which the best results are usually achieved.

The second trip is scheduled for December 11th. Emanuele’s symptoms are getting worse. Emanuele now does not speak and has difficulties to swallow.

A last resonance shows no signs of improvement. Emanuele also has some difficulty in breathing. We must prepare ourselves to travel with the help of an oxygen tank.

We leave for Cologne. The weather is not the best and in Austria we also find snow. Upon arrival in Cologne a second nasty surprise. The doctor who follows Emanuele tells us that Emanuele’s breathing does not go well and asks to see the resonances which show that there is a small lesion in the brainstem. Making the vaccine would put Emanuele’s life at risk. They advise us to return to Italy. Meanwhile all possible solutions will be tested and we will try to understand if monoclonal antibodies could be effective. We return to Italy and Emanuele’s breathing continues to deteriorate. The last hopes are placed in these analyzes and in monoclonal antibodies. To be able to apply them, however, one of the reference values ​​of Emanuele’s blood analysis must exceed a certain threshold.

Emanuele continues to deteriorate, now he is fed intravenously.

The analysis results are slow to arrive. Emaunele flies away on December 15th. The results of the analysis arrive on December 17th. Emanuele’s glioblastoma is negative to everything. In practice he was fighting a battle against an invincible enemy.

We celebrate Emanuele’s funeral on December 18, 2018, just 8 months after the operation. The basilica of Aquileia is full of people. There will be several thousand people. Emanuele was loved by everyone, his friends, his high school classmates and the University, his team mates, his fishing companions, the villagers. Several articles appear in local newspapers.

The gestures of affection multiply.

After only 7 months from his departure he was already given a basketball tournament and a fishing competition in memory, the basketball club the team picked up his shirt (number 5), the shirt of “Guerriero Pugliett” as they named him.

I’m still trying to figure out what happened and what is the collateral beauty behind what happened to a good boy of just 20 years. Time will perhaps explain it to me. I only hope that the work we are trying to do through this site may also represent a small drop and can help us take some small steps towards the defeat of this terrible brain tumor.

Synthesis

Emanuele was 20 years old when he was diagnosed with GBM. The therapy used consisted of a surgical operation, which however failed to remove all the lesions, followed by proton therapy and chemotherapy with Temodal followed by immunotherapy with oncolytic viruses and hyperthermia, followed by immunotherapy with a first cycle of personalized vaccine developed using the its dendritic cells. We were unable to carry out a second course of vaccine due to a recurrence that attacked the brainstem. Emanuele flew away in December 2018, after only 8 months from hospitalization and less than a year from the first symptoms.