Friday, March 1, 2024

East Tilbury woman tells her story as part of International Brain Tumour Awareness Week

AN EAST Tilbury woman is one of a record numbers of UK patients to be recruited to the first NHS immunotherapy clinical trial for brain cancer patients, part-funded by The National Brain Appeal charity.

The first NHS clinical trial using immunotherapy treatment for newly diagnosed glioblastoma brain c​ancer patients, part-funded by The National Brain Appeal charity, has recruited 49 patients in the UK since opening in January 2019. This is the biggest number of UK patients ever recruited to a brain cancer clinical trial.

“This is a great way to mark International Brain Tumour Awareness Week,” said UCLH consultant medical oncologist, Dr Paul Mulholland, who has designed and is leading the IPI-GLIO immunotherapy clinical trial. He continued: “Our plan is to recruit 120 patients before this trial concludes next summer. We have established a Glioma Research Group and laboratory at UCL Cancer Institute and plan to put together a programme of trials so this work can continue.”

With no new brain cancer drugs licensed for more than 15 years, The National Brain Appeal has taken this significant step of fundraising for the trial. The drug ipilimumab, that has seen significant improvements in survival rates for people with melanoma skin cancer, is being given to patients with glioblastoma, a very aggressive form of brain cancer.

Dr Mulholland continued: “A new approach is needed for the treatment of brain cancer. We are aiming to bring together the newest drugs from the pharmaceutical industry together with the latest developments in scientific research to try to find a cure for this devastating disease. The National Brain Appeal is fundraising for this clinical trial. Without this valuable help this programme would not have started and NHS brain cancer patients, such as Rebecca, are being treated with new drugs today thanks to the charity.”

Rebecca’s story

One of the first patients to be recruited to the trial was Rebecca Lewis, age 46 from East Tilbury. She lives with her partner Brian, their three year old son Ash, her 25 year old son Maison and her 27 year old son Mitchell lives across the road with his partner and their two sons. She is a registered community psychiatric nurse, a job that she loves, but is currently unable to work.

In the summer of 2018 Rebecca began to experience severe headaches. She took painkillers but they did not help to ease them. She then started to experience dizziness and episodes she later found out to be seizures where she would collapse to the floor.

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She said: “My friends, family and colleagues started to notice the effect these headaches were having on me and encouraged me to attend A&E at Basildon Hospital.”

Doctors thought Rebecca was experiencing migraines but booked her in for an MRI scan six weeks later as a precaution.

By early October 2018 Rebecca’s symptoms were becoming unbearable and she was struggling to cope. She said: “It was so bad I was signed off work. I was vomiting, I felt fuzzy and completely drained I began to collapse to the floor and have what I now know were seizures.”

Rebecca’s MRI scan at Basildon Hospital revealed swelling on her brain. Doctors decided to admit her to hospital for further tests. Four days later she was transferred to Queens Hospital in Romford who provide neurology and neurosurgery services. It was here that Rebecca heard the news that deeply shocked her and her family, that she had a brain tumour.

Rebecca said: “I had never come across anyone with a brain tumour before. I really didn’t know anything about them or what to expect. My surgeon said that the tumour was wrapped around my right optic nerve. He was confident he could remove if not all, most of it. He wanted to operate the next day. I barely had time to take it all in. The surgery itself was risky. I was told that I might not be able to walk or talk afterwards and that there was a risk of death. However, I felt I had to do it as I couldn’t carry on as I was. The morning of the operation I had a complete meltdown. I was terrified. Would I ever see my beautiful family and friends again? Would I come out of surgery with brain damage?”

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Thankfully the surgery was successful and all visible parts of the tumour had been removed. Rebecca said: “We all felt the relief and elation that I had survived. My recovery was remarkable, apart from partially losing the sight in my right eye. I could walk and talk and there were no cognitive issues.”

However, the elation was short lived. Rebecca met with her surgeon two weeks later. He explained that she had a grade 4 glioblastoma, a very aggressive form of brain cancer, with fewer than ten per cent of patients alive five years after diagnosis following standard treatment.

This was devastating news for Rebecca and Brian, who was with her at the appointment. She said: “I just couldn’t think straight, we both broke down in tears. I thought I was through the worst having survived brain surgery. All I could think was ‘I do not want to die young’.”

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The standard treatment for this is a six week course of radiotherapy and chemotherapy, which Rebecca started on 31 December 2018. Her consultant oncologist who was overseeing this treatment also mentioned the possibility of a clinical trial.

Two weeks before the end of her radiotherapy and chemotherapy, Rebecca met with consultant medical oncologist Dr Paul Mulholland who has designed and is leading the IPI-GLIO immunotherapy clinical trial for newly diagnosed glioblastoma brain cancer patients, part-funded by The National Brain Appeal charity. He discussed the trial with her and carried out tests that found that she was eligible.

Patients need to start receiving the IPI-GLIO infusions within seven days of completing radiotherapy. Rebecca received infusions of a drug called ipilimumab every three weeks, having four infusions in total.

Rebecca said: “Taking part in this clinical trial is something that I one hundred per cent wanted to do and I’m grateful for this opportunity and to The National Brain Appeal for fundraising to help Dr Paul Mulholland get it up and running. I had the treatment at Mount Vernon Hospital near Rickmansworth which is a long way from East Tilbury but one of my sisters, Lauren, lives ten minutes away from the hospital so I stayed with her. My partner Brian, my sisters Ruth and Simone and my best friend Lisa did the dropping off, picking up and looking after Ash. My mum, Maureen, Laura (my son’s partner) Ruth, Lisa and Lauren all took turns coming with me for all my treatments. They have all been amazing.”

Dr Mulholland has monthly follow up appointments with Rebecca and she has MRI scans every three months. She was told after her last scan that the area they were monitoring had reduced in size and there was nothing that they needed to act on. Apart from fatigue and losing some, but thankfully not all, of her hair, Rebecca has not experienced side effects from her treatment.

She said: “My hair is growing back thick and curly and I have to take 20 minute ‘power naps’ when tiredness is overwhelming. Other than that, I am doing well. I’d like to get a bit of normality back in my life and I am looking into whether I can return to work for a few hours a week. It is a shame that I have to have MRI scans every three months as you can’t help but feel anxious waiting for that and then to hear the results.”

“In spite of everything I have gone through this last year or so I am feeling stronger now both mentally and physically. I make sure I enjoy every day, surround myself with people that make me happy and most importantly, I try to stay positive. I am only able to do this because of my amazing family, friends and colleagues support. I am devoted to my family. They are what I live for.”

To donate to The National Brain Appeal’s Immunotherapy Fund go to:


A new immunotherapy clinical trial for brain cancer patients, available to NHS patients across the UK, opened on 21 December 2018 and started to recruit patients in January 2019, thanks to funding from The National Brain Appeal. With no new brain cancer drugs licensed for more than 15 years, the charity, dedicated to raising funds for The National Hospital for Neurology and Neurosurgery, part of University College London Hospitals NHS Foundation Trust (UCLH) and for the Institute of Neurology, has taken this significant step. The drug ipilimumab, that has seen significant improvements in survival rates for people with melanoma skin cancer, will be given to patients with glioblastoma, a very aggressive form of brain cancer.

Dr Paul Mulholland, consultant medical oncologist at UCLH, has designed the phase II clinical trial. He is the lead investigator for the trial which is sponsored and managed by the University of Oxford. Bristol-Myers Squibb has also contributed in part funding the study by providing the drug. The trial will also be supported by the National Institute for Health Research University College London Hospitals Biomedical Research Centre.

One hundred and twenty patients newly diagnosed with glioblastoma will be recruited to the trial. Following the current standard treatment, surgery (where possible) plus radiotherapy and chemotherapy, eighty of these will be given the drug ipilimumab in addition, with forty receiving standard treatment alone. This is a targeted immunotherapy cancer drug that blocks a key regulator in the immune system, making the immune system more active.

Glioblastoma is the most common type of primary, malignant and very aggressive brain tumour with around 2,200 cases diagnosed each year in England. The average survival is less than a year with fewer than 10% of patients alive five years after diagnosis following standard treatment.

The National Brain Appeal raises money for The National Hospital for Neurology and Neurosurgery and the Institute of Neurology in Queen Square, London − the UK’s leading centre of excellence for treating diseases of the brain, spine and the nervous system − such as brain tumours, epilepsy, stroke, dementia, Parkinson’s disease and motor neurone disease. The charity’s vision is to improve the outcome and quality of life for the one in six affected by a neurological condition by funding pioneering research, providing access to the best technology for expert diagnosis and treatment, and training tomorrow’s leading clinicians.
Twitter @BrainAppeal
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