Grieving Hammersmith wife and mother of nine children appeals for support for cannabinoid treatment trial

A widow who lost her beloved husband to one of the most aggressive forms of brain tumour is backing an appeal to fund the world’s first major trial to see if a cannabis-based drug could help lengthen the lives of patients.

The trial, to be funded by The Brain Tumour Charity, is to launch at 15 NHS hospitals to assess whether adding Sativex, an oral spray containing cannabinoids to chemotherapy could extend life for thousands of people who are diagnosed with a recurrent glioblastoma brain tumour.

This tumour type currently has an average survival of just 10 months.

The Brain Tumour Charity, the largest funder of research globally, needs £450,000 to open the trial.

Phase II trial would follow promising results from a phase I study this year which looked at its effect in 27 patients. It is hoped the trial can begin recruiting over 230 UK patients next year if the cash comes in.

Diana Nilsson Shafikova, 35, from Hammersmith, lost her partner of 13 years Gunnar to a Glioblastoma last September last year after he was diagnosed in 2017.

He also left behind nine children including the four  he had with Diana.

She said: “Since Gunnar’s death, London has been a place to help combat my loneliness. It was the first home for our children when I was happily married to the love of my life – life was wonderful. Yet it was also the place where Gunnar took his last breath.”

In February 2017, Gunnar had his first known symptom – a seizure. It was put down to inflammation in the brain.

Gunnar continued having headaches, memory problems and he had a second seizure a few weeks later. This was also put down to the inflammation – but the 7cm Glioblastoma tumour wasn’t diagnosed until June that year.

Surgery removed 90 per cent of the large tumour in his left temporal lobe, followed by the chemotherapy and radiotherapy.

He recovered well but still had seizures, problems with his vision, and mild aphasia and often struggled to find the right words.

The family spent the summers of 2018 and 2019 travelling around Europe and making memories together.

But a routine MRI check in September 2019 found new growths in Gunnar’s brain. He had radiotherapy and chemotherapy again. But in early 2020 he developed severe brain swelling and he was blue-lighted to hospital.

Gunnar had no visible tumour tissue left in his brain but he had chemotherapy for six more months.

He travelled to Sweden for treatments to avoid the increased waiting times in the UK during lockdown.

But, just before flying home from Stockholm in July, Gunnar had another seizure as his condition began to worsen.

He was soon unable to keep mobile, wasn’t eating, had no energy and was losing the ability to speak.

A further MRI scan confirmed that the tumour had spread in his brain and down to the spinal cord. The family was told that nothing more could be done to help him.

Diana arranged a flight back for Gunnar and he spent two days at home before he was moved to Charing Cross Hospital and then to St John’s Hospice for his final days.

Diana said of the day he died on September 16: “A friend brought our children to the hospice and we had a lovely afternoon together hugging and kissing but deliberately not saying goodbye. It was beautiful and we couldn’t have wished for a better day.

“I was always open and honest with the children about the illness. They knew something was growing inside Daddy’s head, that there was no cure, and that we simply didn’t know what would happen.

“I often feel sad looking at the happy families in school and seeing other dads caring for their children. My children won’t have that anymore – nor the simple things like playing football, riding bikes together or enjoying Daddy’s tight cuddles. My heart just aches for them and I know that this sadness is here to stay for all of us.

“Yet, my husband will never leave me again – he is a part of who I am. True love never dies even though a person can.”

Diana is supporting the campaign to raise funds for the Sativex clinical trial in the hope of finding a better way to manage tumour recurrence.

She added: “Recurrence is a death sentence. There are currently no good and working options for how to treat a tumour which has already been resistant to everything.

Doctors, patients and carers know that you’re sent home to die – brutal, but true. That’s the reason why it’s so important to run clinical trials like this one to search for better ways to manage Glioblastoma recurrence.

“I would give anything just to have another moment with my husband. If we had a chance to prolong his life for months or even years then we would bet everything on it. If we can’t find a cute then we need to find ways to prolong life and we have to try everything.”

Dr David Jenkinson, Interim CEO at The Brain Tumour Charity, which is funding the trial, said: “We hope this trial could pave the way for a long-awaited new lifeline that could help offer glioblastoma patients precious extra months to live and make memories with their loved ones.

With so few treatments available and average survival still so heartbreakingly short, thousands affected by a glioblastoma in the UK each year are in urgent need of new options and new hope.

“We’re really excited that this world-first trial. But we also know that for many, like Diana and her family, this trial won’t come soon enough.”

Sativex, which is already used in treating multiple sclerosis, was found to be tolerable in combination with chemotherapy, with the potential to extend survival, in a phase I trial in glioblastomas earlier this year².

But the study was not sufficient to show survival impact. Experts hope that, should the trial prove successful, Sativex could represent one of the first additions to NHS treatment for glioblastoma patients since temozolomide chemotherapy in 2007.

Glioblastomas are the most common and most aggressive form of brain cancer, with around 2,200 people diagnosed each year in England alone. They are usually fast-growing and have tendrils that extend into other parts of the brain. Average survival is just 12-18 months from first diagnosis.

For more information or to donate to the trial visit:
https://www.thebraintumourcharity.org/donate/cannabinoid-appeal/