EXCLUSIVE: NHS worker bowel cancer patient ‘desperate’ for help to fund £1000 a month trial drug

The family of an NHS worker suffering from bowel cancer is desperately trying to find the money to fund a “promising” drug treatment, that costs between £1,000 and £2,000 to administer each month.

Londoner Tim was diagnosed with stage four bowel cancer three years ago at the age of 27, after initially being told he was “too young” to have the disease.

Tim’s sister Ann, who did not want their last names to be published, said her brother was rushed to A&E one day in August 2019 after becoming “seriously ill” at work. He was diagnosed with bowel cancer soon after.

Tim, an secretary at an NHS hospital, underwent emergency surgery a few days later, with doctors removing two tumours from his bowel and inserting a stoma.

However, the cancer had already spread to his lungs. Tim has now had three rounds of chemotherapy and several operations but is still in need of treatment.

Ann, 34, who lives in Cornwall with her partner and three children, said she felt like her heart “stopped” upon hearing the diagnosis.

“I couldn’t speak for a second. I literally never thought this would be the outcome,” she said.

Doctors removed what they could of the cancer, but a few nodules remained.

Tim had another round of chemotherapy scheduled while the family tried to fundraise what they needed for the trial drug, as he hadn’t had any treatment for two months.

Tim has been offered zanidatamab, a trial breast cancer treatment which is now being tested for effectiveness on other cancers.

While the drug has been offered to him free of charge, the NHS can’t fund a treatment programme so this would need to be privately funded by the family.

Ann said the family had been told the drug had “worked wonders” for the few people who had been lucky enough to be able to fund its administration.

“It will be given to him on a compassionate basis,” Ann said, “which because they have looked at his story and his cancer and they think it could work well for him.

“So the drug is free, but that is kind of the only thing that is free. The NHS can’t provide the administration or provide a nurse to do it so we’ve got to fund that, and all the scans he needs and that kind of thing that go with the treatment.

“He needs to fund all of that privately himself.”

Ann said the family had been told the treatment would cost between £1,000 to £2,000 a month, depending on whether it was deemed necessary to run scans or blood tests.

“Generally at the start it’s more expensive because they’re doing more scans and more tests to check how his body is reacting,” she said.

Ann subsequently has started a GoFundMe page with the aim of raising £10,000, explaining that her brother had “a couple of grand” saved but not a lot more.

“None of us really have a lot, so everything we’ve got spare is going towards funding this treatment. We just can’t do it on our own, we’re pretty desperate to be honest.”

“I know Tim is really overwhelmed at the moment.”

Ann described her brother as a “really decent person” who was always doing what he could to help other people.

As much of Tim’s treatment had taken place during the coronavirus pandemic, he had gone through the majority of it on his own without his family or girlfriend able to attend appointments or be there for him after surgeries.

“I can’t imagine how scared he must have been at times, to go through major lung surgery and not have anyone there when he woke up,” Ann said.

Ann also wanted to raise awareness that bowel cancer wasn’t just an older person’s disease and encourage young males to get a check-up if they had an inkling that something was wrong.

While the majority of cases occur in older adults – with 94 per cent of people diagnosed over the over of 50 and 59 per cent of those over 70-years-old, the illness can impact people of all ages.

The trial drug Tim has been offered – Trastuzumab – is a targeted cancer drug used to treat cancers that have large amounts of protein called human epidermal growth factor receptor 2 (HER2).

Though the drug, which is still in its trial stage, is most commonly used to treat early-stage breast cancer, it is also being trialled to treat other cancers that have spread to another part of the body (advanced or metastatic cancer).