Please Help Robin Survive The Worst Brain Cancer

In October 2021, Robin was diagnosed with a grade 4 glioblastoma, the most aggressive brain tumour. A glioblastoma is a type of brain cancer and is the most common type of malignant brain tumour among adults. It can grow fast and spread quickly. Although there is no cure, there are treatments to help give Robin the best possible chance to fight this battle and extend his life as long as possible. Your help will fund this urgent, life-changing treatment.

Based on the statistics, life expectancy for this form of cancer is approximately 12 months from diagnosis, which for Robin was in October 2021. Only 25% of patients are lucky enough to survive more than one year, while only 5% will survive more than five years.

Robin needs your help; this is now his only hope, and he has since become reliant on this treatment.

The treatment to extend Robin's life is called Immunisation Therapy. Unfortunately, this treatment is unavailable in the UK, so Robin has only one option: to fly to Germany every month, only adding to the costs!

Robin is the most amazing son, brother, uncle, partner, and friend. From a little boy to now, Robin has always been looking out for and caring for others. If you know Robin, you know how compassionate, resilient, magnetic, kind and strong he is. He has done incredibly well to get this far and is determined to make this journey a thing of the past. This devastating cancer has torn his life and his family's apart, and I hope you can help him live the rest of it to the fullest. We want to try and increase his quality of life, which is only possible with this treatment.

Before being diagnosed, Robin was a fit and healthy 44-year-old with a vibrant career and future in front of him. He is a very well known and loved driving instructor, however after the diagnosis he is no longer able to work. This has resulted in him being unemployed and living on state benefits. With the worry of expensive medical bills, all so he can stay alive, it is becoming very hard for Robin to enjoy life.

His journey so far:

For a year and a half, Robin had been showing symptoms that were overlooked by doctors and put down to anxiety; however he knew himself that something was wrong. He had symptoms of tinnitus, sudden numbness, vision disruptions and feeling like someone had slapped the side of his face. Every time he was shrugged off by the doctors until finally he was sent for an ear MRI for his tinnitus. This is where his symptoms turned out to be more serious than what was first thought. On this ear MRI scan they had found swelling on the brain. Quickly afterwards he was given an urgent brain MRI with contrast…. after which they could start to understand what was wrong with his head.

Robin was referred to neurosurgeons at Charing Cross Hospital in Hammersmith; this was where he’d receive the news he feared and no one ever wants to hear.

Robin was initially diagnosed with a grade 3 brain tumour. A review of the MRI showed a growth of approximately 5cm (2 inches) on the left temporal lobe.

He was soon heading back to Charing Cross Hospital where surgeons would try and remove as much of the tumour as possible. The tumour's location was growing near important regions of the brain that control functions such as language and movement/coordination. This meant surgeons had to be particularly careful not to harm Robin in any way and leave him with permanent damage.

Once it had been removed, they would be able to send parts off to a lab where a biopsy would be completed. This would be able to confirm exactly what grade of tumour and type of cancer he was fighting.

However, they could not remove 100% of the tumour and had to leave a satellite nodule which would be treated with radiotherapy. A couple of days later, he was home where he rested and was on the mend with a big battle wound as a reminder.

A month later on the 29th December just over a 6-week course of radiotherapy started, where Robin had to go back and forth from Harefield to Charing Cross Hospital.

Whilst undergoing radiotherapy he was also given a course of strong chemotherapy tablets, which came with numerous side-effects including nausea, vomiting, fatigue and weakened immune system.

Whilst going through this, Robin had the final histology of the biopsy, which confirmed the diagnosis of a grade 4 glioblastoma, with IDH wild-type, meaning that it's the most aggressive type of brain tumour you can get.

The full course of radiotherapy was given and he coped with this considerably well, despite more side-effects including hair loss and sleep problems. Everyone including the doctors were in awe of how well he was doing.

Soon the realisation had set in that the NHS had given all of the possible treatments available to Robin and this would not be enough to fight this aggressive tumour. It was back to researching alternative therapies where Robin had found a clinic in Germany that looked like his best survival option. After countless phone calls and emails back and forth to Dr. Stefan Van Gool from the IOZK clinic in Cologne, Robin stepped on a plane to visit the clinic and started this exciting new treatment and glimmer of hope.

The IOZK clinic are specialists in immuno-oncological therapy. The treatment involves training the body to control the tumour by using the body's immune system. Robin travels to the clinic a couple of days after finishing each month's chemotherapy. This means he travels while still suffering from the chemotherapy side effects and it doesn't help when dealing with flight delays and cancellations. As you can imagine, there are multiple side-effects to this immunisation therapy, plus multiple infusions and injections.

This, unfortunately, is his last option in keeping him here...

This life-saving treatment is very expensive but is one of a kind. So far Robin has spent £40,000 and now that the chemotherapy has stopped in the UK, he can start the next treatment at the IOZK clinic which costs £25,000 a month. Robin will definitely need 2 months treatment, maybe even a third. After these sessions, Robin will have to continue with top up visits costing £6,000 a month. These monthly treatments will most likely be for the rest of his life.

The UK doctors are not able to prescribe the drugs required by the IOZK clinic. This means Robin has to pay for a private prescription in Germany, costing around £500 a month.

Robin isn't one to ask for help however he has exhausted all of his resources, especially as he is now on state benefits. So I have set up this page to give him support and peace of mind that he can continue to do this treatment without the stress or worry that it might have to stop due to running out of funds.

We can all agree that you can't put a price on life, so can we please ask you to share this to help gain awareness, whether online, via social media, email, or word of mouth. Every possibility to reach more and more people would help keep Robin getting the treatment he needs.

Any funds that remain after Robins's treatment will be donated to the Brain Tumour Charity, who work with Maggie's, the support charity at Charing Cross Hospital who have helped Robin during this journey so far.

On behalf of Robin, his family and me, thank you for any donations and awareness you can raise to fund the rest of his journey. Thank you for spending the time to read and share Robin's story; through your contributions and support, he will have the best chance of fighting this xxx

Links:

https://www.iozk.de/en/

https://www.thebraintumourcharity.org/

https://www.maggies.org/