The great hope

As Tessa Jowell and Nicola Mendelsohn speak out about their need for immunotherapy, Ross Lydall

WHEN Molly Lane Fox was diagnosed with brain cancer aged four, it was almost impossible for her parents to accept. “You cannot and will not believe that nothing can be done,” her father Oliver Lane Fox recalled. “You search for clinical trials, for new approaches that could save or extend your child’s life.” Molly (pictured right), who had a Diffuse Pontine Glioma tumour, died in 2011, just after her fifth birthday. But her legacy has been profound. Her family channelled their grief into raising £1 million to establish the UK’s first dedicated brain tumour ward at the National Hospital for Neurology and Neurosurgery near Russell Square.

Last week it announced the first NHS trials of an immunotherapy drug for patients with the same type of brain tumour as Baroness Tessa Jowell. It was, said lead oncologist Dr Paul Mulholland, “the most important trial for brain cancer patients in the last 15 years”.

Brain tumours and immunotherapy have received overdue attention since Baroness Jowell brought the House of Lords to its feet last month in recognition of her bravery.

weekend Facebook’s vice-president for Europe Nicola Mendelsohn revealed that she has incurable cancer. The 46-year-old was diagnosed with follicular lymphoma in November 2016 and is taking a “watch and wait” approach. She will start treatment — a combination of chemotherapy and immunotherapy — if symptoms worsen.

Immunotherapies are the great hope in cancer medicine. These are drugs that harness the body’s own ability to kill cancer cells. Baroness Jowell sought them out in Germany after running out of options in London. It is her hope that patients be given greater access to clinical trials — and be able to switch drugs within a trial if one fails to work.

But immunotherapies are not without problems. First is their cost. Some are available on the NHS, but not for all cancers. Second is their usefulness. They work well, but normally only on a minority of patients. Third is the “game” that is often played between drugs firms and the NHS rationing body Nice, which denies patients the treatment for many months while a price deal is struck.

More than £500 million is spent on cancer research in the UK each year, but less than two per cent is spent on brain tumours. Molly Lane Fox’s legacy is helping to change this.

The patient

FATHER-of-two Ryan Cox was diagnosed with bowel cancer last May at the age of 29. He is trying to raise at least £100,000 via crowdfunding to pay for an immunotherapy called pembrolizumab, which is available on the NHS — but not for his type of cancer.

Mr Cox and his partner Lauren Foy have a six-year-old son, Alfie, and a 15month-old daughter, Grace. He was declared “cancer-free” after chemotherapy and an operation last September at St Mary’s Hospital, Paddington. Last November he was told the cancer had in fact spread to his liver and lymph nodes.

“It just doesn’t feel fair,” he said. “They knew I would benefit more from immunotherapy. They are telling me there are no more trials. If I want it, I will have to win the lottery or pay for it.”

Mr Cox heard about pembrolizumab, also known by the brand name Keytruda, and went to see oncologist Dr Tobias Arkenau at the private Sarah Cannon Research Institute, which carries out 35 clinical trials a year.

Dr Arkenau told him his unusual genetic make-up — he has a mismatch repair-deficient tumour — made him perfectly suited to pembrolizumab.

Pembrolizumab is already approved for use on the NHS for lung cancer and melanoma. With bowel cancer, it is likely to work on only the five per cent of bowel cancer patients with Mr Cox’s unusual biology. Dr Arkenau believes exceptions have to be made for such patients. “We see so many patients who come in and say ‘I want to have immunotherapy’, compared to chemotherapy or targeted drugs,” he said. “Immunotherapy does make sense but it is not for everyone. It’s expensive, but these patients are in their 20s and early 30s. You can’t just see the cost. You need to see the return to society.”

The doctor

JAMES Spicer, a consultant oncologist at Guy’s and St Thomas’ hospitals and professor of experimental cancer medicine at King’s College London, welcomed the “huge tidal wave” of immunotherapies coming forward, describing them as “fantastic drugs”.

In his speciality of lung cancer, they have extended survival, often significantly, and have fewer side-effects than chemotherapy. However, only about a quarter of lung cancer patients are likely to have a tumour “target” that could benefit from immunotherapy.

“With this immunotherapy, we can now expect 20-25 per cent of patients will be alive and well many years from now,” Professor Spicer said. “That is a scenario we have not seen before.” He said there had been a “sea change” in the approval rate, and NHS funding of, immunotherapy drugs in the past five years.

Early advances were made in malignant melanoma. The challenge was now to improve the treatment of the “big four” cancers: breast, lung, prostate and colorectal. “These are the ones that kill more than any others, certainly in the West,” Professor Spicer said. “If the patient has one of these diseases and it’s already spread around the body, the chance of offering them a cure has been, until recently, a hypothetical one.

“These are better-tolerated drugs than chemotherapy. That is one advantage.” However, he added, “they have dramatic effects on some patients but they’re not a miracle cure for everybody.”

He welcomed the use of adaptive trials, as sought by Baroness Jowell. “Patients are desperate to try as many potential therapies as possible in the time available,” he said. “There are many trials to be done and not enough patients to try them on.

The science

THE first generation of immunotheraThis