A dad diagnosed with a terminal brain tumour is now cancer free - after loved ones raised 100K for pioneering treatment in Germany. Mark Thompson, 38, was diagnosed aged 33 when he was dogged by dizziness, headaches and vision problems.
He had an awake craniotomy to remove the mass and offered radiotherapy and chemotherapy on the NHS - and given an estimated three to five years to live.
Mark, of Littlehampton, Sussex, sought a second opinion and was told about pioneering immunotherapy treatment in Germany costing over £100,000.
Mark’s friends and family rallied around him to raise the money with football tournaments, disco nights and group hikes. He travelled to Germany for the treatment and is currently cancer free - but without continued treatment it could return.
However all the money raised for his treatment has been used so the family is fundraising once more. They are also calling for improved brain cancer treatments.
“The treatment worked like magic, and with almost no side effects," said dad-of-three Mark. ''I’m now coming up to five years, and latest scans show no evidence of the disease at all. I’m stable, that’s more than I ever hoped for.”
Mark, husband to Sofia and father to Wilson, 17, Rihanna, 11, Charlie, eight, started getting symptoms in February 2018. It took six months of medical appointments before a CT scan was offered at Worthing Hospital, which revealed the mass.
Mark, who works in horticulture, growing bedding plants, said: “They told me immediately I had a brain tumour, there wasn’t any messing about.
“I had an operation to remove the tumour, but they couldn’t get to all the surrounding cancer cells. It was really weird to be awake with people rummaging around inside my head, but it was the best way to make sure they didn’t remove or damage any healthy tissue.
“I was then told the tumour was terminal and I had between three and five years to live. It wasn’t the best to find that out at 33.
''The first thing that came into my mind was my kids, it was really difficult to deal with.
''My youngest, Charlie, had only just turned three. I remember Sofia turning to me and saying: ‘I don’t think I can do this without you’, and I knew I had to fight it.”
Mark, now 38, was four months into a 12-month course of chemotherapy when family friend Pip Emmott helped him to get a second opinion, having previously lost her sister to the disease.
Mark spoke to Professor Dalgleish at St George’s Hospital, at which point he said “everything changed”.
Prof Dalgleish recommended immunotherapy under Dr Thomas Nesselhut in Duderstadt, and prescribed Mark other repurposed drugs, as well as cannabis oil at a cost of £420, which Mark had to pay for.
Mark’s first treatment cost nearly £12,000, which involved taking his blood, removing white blood cells, multiplying them, freezing them and then using those for future injections.
He then needed monthly doses, at about £7,000 a time, but these have now been reduced to every six to eight months, which he hopes to maintain.
Mark said: “Everything feels a lot more positive now and I’m pretty much back to normal, other than my eyesight isn’t great thanks to damage from the initial radiotherapy.”
Mark added: “I have no doubt going to Germany saved my life. But it was horrendous, really, with the money and the time away from family.
''My oncologist in Sussex wasn’t happy about me having any alternative treatments, but I had to do what’s right for me.
''I just don’t think the NHS looks at any other possible treatment, it’s chemo and radio and that’s it.
''I’m not against the NHS at all, but what I have found incredibly frustrating in this whole journey is how limited treatments are in this country.
''Treatments for brain tumours haven’t improved in decades, and it needs to change.”
Mark is now campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.
To sign and share the petition before it closes at the end of October 2023, go to www.braintumourresearch.org/petition. To support Mark’s fundraising, visit: www.gofundme.com/f/treatment-for-brain-tumour
