Father with an aggressive brain tumour who’s lived eight YEARS beyond his prognosis has written a book about his experience – despite losing the ability to read after surgery
- Martino Sclavi, 46, from London, sufferers from Glioblastoma grade IV
- The father-of-one has lived eight years longer than his medical prognosis
- Despite losing the ability to read, he was able to published a comical book
- Martino’s family have set up a GoFundMe campaign to fund further treatment
A man who has lived eight years longer than his medical prognosis, has revealed how he was able to publish a book despite having surgery to remove the part of the brain that enables reading.
Martino Sclavi, 46, from London who was first diagnosed with Glioblastoma grade IV in 2011, has lived eight years beyond his prognosis.
The father-of-one was 38-years-old when he began to experience symptoms such as headaches, that he thought were stress related, while working on a film project with close friend Russell Brand in Los Angeles.
He was given an emergency operation after being rushed to hospital, before receiving further treatment by medical experts in Rome.
‘The diagnosis changed everything for me. Brain cancer means every expectation my wife and I had of our life completely changed,’ he told FEMAIL.
Martino Sclavi, 46, from London who has Glioblastoma grade IV, detailed how his life has changed since the diagnosis and how he lived eight years beyond his prognosis
Martino who is a close friend of Russell Brand, published memoir The Finch In My Brain despite having had surgery that took away his ability to read
Martino who has produced a series of films and documentaries including Brand: A Second Coming, told of his battle to live a full life and defy the odds despite having a brain tumour.
He said: ‘I was in Los Angeles in January 2011. It was beautiful. The air was just a bit cold in the evenings otherwise always perfect. I started to get some headaches, just randomly during the day.
‘I just assumed that I was a bit stressed by the screenplay that had to be finished. Then the headaches became stronger and stronger.’
Speaking about his initial reaction to the diagnosis, he continued: ‘I definitely felt a bit confused. Discussions happened over my head but they felt surreal, like they weren’t about me.
‘I had never thought about brain cancer. I first thought there would be a plan but no one really has a plan with brain tumours.
‘Not even the extended group of my friends or my family. With a sudden diagnosis of 18 months to live, we were all lost, disoriented. Everyone was looking for clinical trials for this specific type of tumor.
Martino (pictured after surgery) revealed his decision to publish a memoir was inspired by the expectation of others that it would be impossible
The film producer (pictured with his son) says he’s been unable to get the Dendritic vaccine that he was given as part of a trial in Rome again due to a funding cut
‘And I followed this path, we packed our bags and in two days we transferred to the center of Bethesda of the NIH, in Washington DC. But actually we all were confused, no one could really agree about the options. No one could understand these new battles.’
Martino who was inspired to write a comical memoir documenting his experience with cancer, explained that he wanted to challenge himself to do something that seemed impossible.
Speaking about writing ‘The Finch In My Brain’, he said: ‘It started because I wanted people to know I loved them, but also being suddenly disabled meant I needed to try something apparently impossible. I wasn’t thinking it would be published but it became something I knew I had to finish and it felt like I couldn’t die before it was done.
‘And I wanted the pharmaceutical world to know that it needs to connect with a much wider types of care and treatments, including how we look after each other and the effect of stresses in our lives. They could still make plenty of money, just prioritize our health please.
‘As I wrote in my book, besides following the most advanced protocols, and trying to be a good guinea pig, I have used all the tricks that are allowed, some that aren’t yet allowed, and others that many say that have no relevance.
‘I am very attentive to diet and peace of mind. I went back to Rome and had a Dendritic vaccine as a trial, at the Policlinico, and perhaps that did it. When the cancer came back recently we asked that doctor to do it again but her funding was cut, so she couldn’t do it.
‘The use of funds for cancer research sometimes depends on the political situation in a university or city hall. You think doctors work together, swapping ideas, and good ideas get developed, but it doesn’t always work that way.
‘At the time, the radical Dentritic vaccine I started eight years ago seemed like a silly idea, but now more people have been trying this as it somehow helps.
Martino (pictured when he was younger with his mother Marianella) says the Dentritic vaccine seemed radical at the time that he tried it, but many people have now benefited from it
Martino (pictured with his mother ) revealed you’re never given an all-clear from Glioblastoma, but he’s learnt to be at peace with death
‘On the whole without my sister I don’t know what would have happened. She is a scientist so was able to research and find new adventurous cancer trials, and a network of friends, and friends of friends, who knew of different therapies.
‘There are most definitely a lot of alternative worlds that my sister has looked at for me, and right now I am working with Germans who are doing a new experimental vaccine.
‘You are never clear from Glioblastoma. It always comes back. In 2011 I cut smoking, alcohol and sugar. I learned to meditate and I learned to be peaceful with death and see every day as extra and beautiful.
‘It came back in May last year. It showed on the MRI. I didn’t notice it at all. I already had big holes in my head so I do not really sense if there is a bad, strange new movement, it’s just always a bit moving about.
‘We are trying some new combinations of known medications (still not yet available on the national health) with some more experimental ones – Parvo-virus for example. To test the method that a doctor we found in Germany has been working on for many years I need a dose of Avastin every 2 weeks.
‘We might get it for free but have to wait for committees to meet and decide, which can take weeks. We can find it privately but are struggling to find £4000, but private doctors can get it – which means the money we raised might not be enough in the end.
Martino (pictured with his girlfriend) says most people with returning cancers aren’t eligible for free treatments and clinical trials
Father-of-one (pictured with his son as a toddler) believes health related Facebook groups such as Brain Tumour Charity are vital
‘When you are being a Guinea pig either you fall within the criteria of a clinical trial and then everything is free, or if you don’t, as people with advanced, returning cancers often do, then it is not necessarily covered – especially if you travel to a different country. That is why extra funding is important.
‘A pharmaceutical company in the UK asked us for £200000 for a dendritic vaccine so this latest vaccine we heard of (a neoepitopes vaccine), also meant going to Germany. This means going to Germany periodically for repeated doses, pay for hotels and do all the things you completely forget would be another barrier to getting help. I also am taking CBD oil, LDN, Valproic acid and Temozoloide.’
The film producer, whose marriage of 14-years crumbled after surgery, revealed that he has a support network, his ongoing friendship with Russell Brand and a new girlfriend.
‘I have a girlfriend who met me as I am, she didn’t know me without my disabilities, but we are happy in this life. For people who knew me before it is not easy to understand how I’ve changed, I am in many ways another person. Obviously, some people see that I am less brilliant, with a memory that is scary, full of holes, so being more deeply in the present it is necessary for me – for what I have,’ he said.
Speaking about his friendship with Russell Brand, he added: ‘We’ve grown up together, so the young men we were, learnt about being vulnerable. It is good to have real history with people when something like this happens.’
‘The person with cancer needs a support team, the support team needs a support team and so on. The crowd funding campaign showed us that there can be a wide support network and that it is amazing for the heart to see it come together.
‘Every experience is so different, as it is so hard to find out what possibilities there are. People turn to other people who have been through it and most of them are people who have lost or are losing their partners or children to it.
‘Facebook groups like the Brain Tumour Charity group are vital. The charity Brain Tumour Research are fantastic at trying to coordinate discoveries and help people understand the options but there is still so little money put into cohesive research – historically it has been just 1% of the national cancer research spend.
Martino (pictured with his son) argues the government needs to put more funding into cancer research and says brain tumours are the biggest cancer killers of people under 40
The film producer (pictured) has set up a Go Fund Me page to raise money for further treatment, his current life expectancy is unknown
‘People generally seem to think brain tumours are for old people that have lived unhealthy lives but kids get it too, actually brain tumours are the biggest cancer killers of people under 40. The government really needs to stop cutting funds to the NHS and put more into this. The Brain Tumour Research continually campaign for this,’ he said.
Martino who has a Go Fund Me Page set up to raise money for further treatment, revealed that his current life expectancy is unknown.
He revealed the life accomplishment that he’s most proud of is his 11-year-old son Miro, and that they treasure each day.
He said: ‘Time with him is always my priority and considering I can not read him books I have to be creative to invent things to tell him fantastic stories. He has a very good mind to see the worlds that only exist in the sounds.
‘I still try to meditate and I sew. As I am doing a lot of experimental projects to keep me alive I need something to keep me calm, and focusing on something helps a lot. I have started a new book but as they scoop more brain out of my head, I have to keep relearning how to write, so it is slow.
‘I want to write a fictional book about a handicapped young boy. Writing the Finch was apparently impossible because I couldn’t read, but at least I had memories to pull from, with this new book with fictional characters, the new impossibility is that I can never remember who they all are. But ‘impossible’ is the sort of word that makes me stubborn.’
Martino (pictured with his son) says it’s important that people help each other as a terminal illness often brings depression at some stage
Martino (pictured with his sister) revealed the therapies that he’s had have all been through the help of friends
The father-of-one (pictured after surgery) says it’s important to get scientific opinions on research as every minute counts
Advising others on coping with a terminal illness, he said: ‘Everyone has different ways to do this or have their own character. It obviously brings depression for most of them at some point. But I guess that we all have to help each other.
‘Of course the wider community is always very important. To hang out with different people and not only other ‘ill’ people. To be part of life and not just cancer.
‘The family is great but we all have to be active ourselves, and so I have to somehow invent something for them. Somehow I have to cheer up the friends somehow.
‘Hanging out (even if it is difficult) with kids – Superheros help, a lot. My boy has grown up with this and knows most definitely that you don’t give up. We are Kicking A**!
‘In the end all these therapies, the DC one, the Rome vaccine, the German one, were all thanks to friends who knew friends.
‘That is why it’s important to talk about this, to have a network and to have a support from the charities that can organize these networks and make recommendations about the different information that comes up, like the keto diet for example.
‘There is a lot of information on the internet, cures based on hearsay, and it’s important to get an opinion on what is real research based scientific fact , because every minute counts’
WHAT IS A GLIOBLASTOMA AND JUST HOW DEADLY IS IT? THE AGGRESSIVE BRAIN TUMOR SUFFERED BY JOHN MCCAIN
Senator John McCain was diagnosed with a glioblastoma in July 2017
Glioblastoma is considered the most aggressive tumor that can form in the brain. Senator John McCain was diagnosed with one in July 2017.
Patients have a 10 percent chance of surviving five years after their diagnosis, according to figures. The average lifespan is between 14 and 16 months.
Three adults per every 100,000 will be struck down with a glioblastoma, says The American Association of Neurological Surgeons (AANS).
It is most commonly found in men aged 50 to 60, and there is no link between developing glioblastoma and having a previous history with other cancers.
WHAT IS THE TUMOR MADE OF?
The tumor is made up of a mass of cells growing quickly in the brain, and in most cases patients have no family history of the disease.
It won’t spread to other organs, however, once it is diagnosed, it is nearly impossible to target, surgeons claim.
Unlike other types of brain cancer which are more specifically located, glioblastoma can occur in any part of the brain.
WHAT TREATMENT IS AVAILABLE?
Because the tumor likely already spread deep into the brain by the time it is diagnosed, the cancerous tissue is incredibly difficult to remove.
Surgeon will only ever remove the tumor, or part of the tumor, if it won’t do any damage to the surrounding brain tissue.
Dr Babcar Cisse, a neurosurgeon at the Weill Cornell Brain and Spine Center, told Daily Mail Online in July 2017: ‘By the time a glioblastoma is diagnosed, microfibers can spread to the rest of the brain which an MRI would not spot.
‘So even if the main tumor is removed and the patient receives radiation and chemotherapy, it will come back.’
GRADING A GLIOBLASTOMA
Brain tumors are graded from between one to four, depending on how fast they grow and how aggressive they are.
Malignant tumors are either given a high-grade three or four, while benign ones are given a lower grade one or two.
Glioblastoma is often referred to as a grade four astrocytoma – another form of brain tumor, says the AANS.
Patients typically complain of symptoms such as confused vision, trouble with memory, dizziness and headaches.
The symptoms are somewhat nonspecific, and vary from person to person, and may not persist.
The disease is therefore impossible to diagnose based on symptoms alone.
To donate to brain tumour research: www.braintumourresearch.org
Martino’s blog: http://thefinchinmybrain.com/
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