'I was given a terminal diagnosis – and then a new therapy cured my leukaemia'

Harry de Quetteville
Sophie Wheldon received Car-T therapy, a pioneering new cancer treatment

On April 6 Sophie Wheldon, 21, was given the worst news any cancer patient can receive.

She had been expecting just another meeting with her doctors, one of her innumerable consultations since first being diagnosed with leukaemia. But as soon as she walked in with her sister, Amie, 29, she knew something was up. 

“My doctor said, ‘Where are your Mum and Dad?’" She would need the support. He told her: "You’ve relapsed."

Sophie didn’t quite realise the implications at first, and asked if she would have to undergo more chemotherapy. But the doctor said no. “Chemotherapy won’t work anymore.” His team had run through all the usual options to treat her. 

“I thought ‘What’s happening?’" says Sophie. Amid the trickling realisation of a terminal diagnosis, she heroically kept her composure. “I didn’t want to cry in front of my sister.”

In just 10 months her life had been horrifically upended; she had gone from being a thriving, happy, second-year biology student at Chester University to a full-time patient, subjecting her body to round after round of gruelling treatment, only to find it was for naught. And it had all started so innocuously, with stiffness and a headache at the start of the summer holidays the previous year. 

“When my GP assessed me, he just couldn’t explain it,” she recalls. Referred to Heartlands Hospital, Sophie was given a blood test. “By then I was sitting on a ward. Everyone else was 60-plus and had leukaemia and I thought ‘Well, I haven’t got that’. I was 20.”

Finally she was called into a tiny consultation room. The doctor had his head in his hands. “I literally don’t believe it,” he told Sophie. “It’s leukaemia.”

In the blink of an eye, Sophie’s old life ended. She called her parents (“You better hurry up because it’s not good”) and was immediately admitted to hospital. Diagnosed on Friday, treatment began on Monday. So swiftly did it begin that there was no time to think about side-effects. “No time for saving fertility or anything like that,” she recalls matter-of-factly, her bright Chelmsley Wood accent belying the astonishing gravity of her experience.

Her hair started falling out. She had Acute lymphoblastic leukaemia (ALL), one of the four types of life-threatening, acute leukaemia. (Other non-curable but largely non-fatal forms of the disease are known as chronic leukaemia.) Of the 10,000 or so people diagnosed with leukaemia in the UK each year, about 350 have ALL. 

There are no official statistics but estimates suggest that five-year ALL survival rates for 15-24 year-olds are about 70pc. One of the key factors affecting that survival, however, is early diagnosis. To put it bluntly, if any cancer has progressed so far that patients walk straight in to A&E, bypassing their GP, it bodes poorly.

Leukaemia Care, which The Telegraph is supporting in this year’s Christmas Appeal, is desperate to change that, to help patients and GPs think about leukaemia when confronted with symptoms that may initially seem vague. The fact that a third of those eventually diagnosed with leukaemia visit their GP several times before being referred to hospital shows how hard it can be to identify. 

“It’s really important to stress that we aren’t blaming GPs,” says Charlotte Martin, from Leukaemia Care. Instead, she says, the charity wants to “raise the bar of suspicion” – especially given that all that is needed to rule out the disease is a simple blood test. 

It has drawn up a list of six symptoms to look out for. On their own, they may be nothing to worry about. But with one or more, says the charity, don’t delay, visit your GP.

A quick look at cancers diagnosed in A&E shows how serious the leukaemia situation is. For all cancers, only a fifth (22pc) are diagnosed through “emergency presentations” at hospital. With blood cancers (leukaemia, lymphoma, myeloma) that rises to 30pc. For leukaemia alone, it rises again, to 37pc. With acute myeloid leukaemia (AML) more than half (53pc) of cases are diagnosed in emergency wings, and with ALL it is 65pc – the highest rate of any cancer.

In a sense, Sophie was lucky: she was referred, not rushed in, to Heartlands Hospital. She underwent two five-week rounds of chemo, and still vividly recalls the worst of the side effects: ulcers all down her throat, turning  anything she swallowed into slivers of glass. “The only thing I could eat was chipped ice.” Yet all to no avail. So she was prepared for a stem-cell transplant. 

“These two treatments – chemo and stem cell – are the treatments we have had for decades,” said Dr Amit Patel, one of the country’s most eminent experts in the disease. “That’s been the paradigm.”

The transplant took place last November. “I remember being so ill,” Sophie says. She had to wait 100 days to see if the transplant would help her get better. In those 100 days she lost three stone. On April 6, amid short delays and double-checks, she went in for an apparently innocuous appointment. And the doctor asked: “Where are your Mum and Dad?”

But – of course there is a but. Because Sophie Wheldon is still alive to talk about her experience. Unlike the countless leukaemia patients who have gone before her, unlike the 4,700 who die each year (13 each day), Sophie was offered an alternative. Chemotherapy and stem cell transplants were not the end of the road. There is a new treatment in town.

Sophie in hospital on her 21st birthday

It is called chimeric antigen receptor T-cell therapy, known as Car-T. It sounds complicated. And while the science behind it has been fantastically challenging to perfect, the principle is devastatingly simple: the patient’s own T-cells, which play a key part in the body’s immune response, are modified to become hunter-killers of the cancer.

“Fundamentally your immune system should not allow cancer to occur in the first place,” says Dr Patel. “Cancer cells should be detected and killed. But that function fails, and the immune system doesn’t spot the cancer. If you can take those blinkers off, the body cures itself. You’re waking up the immune system that is already there.” 

The process currently requires a patient’s white blood cells to be collected and sent to America, where the technique was developed. The cells are then genetically modified to latch on to the very cancer cells they were previously failing to spot. “It’s beautiful – direct killing of these cancer cells,” says Patel. 

He is quick to caution that Car-T doesn’t always work, and patients can suffer relapses. But for some, it offers an almost miraculous escape. 

“You are able to rescue patients who would not have survived,” he says. “Patients who would have been dead can not only achieve a prolongation of life, but can be cured. That’s what’s so exciting.”

Sophie’s white blood cells were collected at the end of April and took four weeks to come back. She was admitted to hospital on June 9, her 21st birthday. The following day the modified cells were reinfused into her bloodstream. “Then you wait for the storm to hit.”

The process of killing the cancer cells is so dramatic, so quick, that it can trigger a high temperature, the shakes, low blood pressure. The body appears to be purging itself. But after only 10 days Sophie was allowed home. And after 28 days, she had a biopsy to see if there was any leukaemia left. 

“It felt like a very long wait,” says Sophie. Then came the result. “They told me I was in complete remission.” Three months after facing a fatal diagnosis, her cancer was gone.

For doctors like Patel the implications of CAR-T are also thrilling. For it represents one of the first tangible applications of an entirely new, revolutionary form of medicine.

Personalised therapies, which tweak treatments to match the unique genetic profile of individual patients, are a radical step forward from the one-size fits all approach we all know today.

“Car-T represents a paradigm shift,” says Patel. “The rest of my career is going to this kind of therapy – immune-based, personalised or genetically-modified cell therapy. This is just the beginning – the horse and carriage age. Soon we will be in the motor car era and beyond.”

Today, Car-T is available only for ALL. But researchers are already working to extend that to AML. And, breathtakingly, trials are underway to use it on solid cancers too. 

“For those cancers, the main treatment is surgery. Cut the lump out. Typically it’s not curative,” says Patel. “Renal, brain tumors, breast cancers are being trialled with Car-T. If one of those become available, it will be transformative. Car-T will completely change the way we deliver cancer care in decades to come.” 

It’s not cheap. Car-T currently costs the NHS more than a quarter of a million pounds per patient. But costs are likely to come down as treatment become mainstream. 

Sophie Wheldon went back to university in September, having missed just one year. Her dissertation is about leukaemia. But in a way she’s ahead of her lecturers. “When I started, I couldn’t find anyone who’d had Car-T,” she says. “Now I feel like a pioneer.” 

Leukaemia Care, which provides support to individuals and families affected by blood cancer, is one of three charities supported by this year’s Telegraph Christmas Charity Appeal.

Our two other charities are Wooden Spoon, which works with Britain’s rugby community to raise money for sick, disabled and disadvantaged children; and The Silver Line, a 24-hour helpline and support service for lonely elderly people.

To make a donation, visit telegraph.co.uk/charity or call 0151 284 1927

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