Yorkshire dad with terminal cancer launches fundraiser for £50k treatment abroad

Yorkshire dad-of-two Adam Gray, 36, underwent extensive surgery and chemotherapy in the UK after being diagnosed with stage four Neuroendocrine cancer. And despite being given a terminal diagnosis in 2019, he was left tumour-free last year after receiving four rounds of peptide receptor radionuclide therapy (PRRT).

But just three months later, he was given the “devasating” news that he had 12 new lumps in his liver. And in a further blow, he claims NHS guidelines in England prevent cancer patients from accessing more rounds of PRRT, meaning he needs to go abroad.

Now he's desperately trying to raise the money to fund his trip to India for the treatment, which he hopes to complete by the end of this year.

Adam, of Harrogate, said: “It came as a shock to my oncologist, and then it became clear that under the NHS guidelines, I was not allowed more than four rounds.But the thing that makes me mad is if I had a Welsh or Scottish postcode, I could have accessed the treatment.

“It doesn’t make sense between the three countries that because I’m in England I’m having to fund this myself. It doesn’t sit with me very well. It’s bizarre that in this day and age a treatment that is so effective for my kind of cancer isn’t available in a first-world country - but I can access it if I’m willing to pay for it in India."

Adam visited doctors in July 2019 with a stomach ache, before he learned 48 hours later that he had a rare, often incurable form of cancer, producing dozens of tumours. At the time, his childhood sweetheart Christine, 35, who he'd recently married, was expecting their daughter, Amelie, leaving his perfect life “flipped upside down”.

Adam, who previously cycled nine miles to work each morning, endured four types of chemotherapy, where he lost all his hair and shrunk down to 9-stone (57kg). Surgeons also removed half of his liver and part of his pancreas, before they found lots of new tumours, with some in his chest and lymph nodes.

Specialists then introduced him to PRRT, an internal radiotherapy treatment, and in September last year, scans revealed he was free of the growths, to his amazement. The news was made sweeter by the remarkable birth of his son, Wilfred, in August - even though Adam believed his years of treatment had made him infertile.

But in December, his world "fell apart again" when doctors shockingly found 12 new tumours in his liver.

Adam said: “It was absolutely devastating. I didn’t stop crying for a long time. I’d gone back to work while I was on radiotherapy to support the family. And I called my boss when it happened and sobbed down the phone to her.

“Usually when we’d have a call with the oncologist, I’d arrange for the kids out, as one is only three and the other is seven months. We didn’t want them to know what’s going on with daddy at the moment. But because it had been three months, we thought it was going to be positive news.

“We had a Zoom call on the laptop in the kitchen, and that’s when he told me I had 12 new tumours, and my world fell apart again.”

Adam said he was ready to undergo further rounds of PRRT radiotherapy but was told he could not qualify for any more doses under NHS guidelines in England. And after looking into the different options, he has now decided to fly out to India on April 25 for his first treatment, as he tries to raise the cash for three further rounds.

He said: “We were put in touch with a doctor in Germany, who can administer the Alpha PRRT, but for one round of treatment it was £30,000.

“So we looked elsewhere and found that it cost about £15,000 in India per round. I’ll need to be there for two weeks, and I’ll be radio-active following the treatment. I’ll be flying out to Delhi on my own and I’ll be missing my wife’s birthday. So I won’t be around my kids or family.”

A spokesperson from NICE (the National Institute for Health and Care Excellence) said they followed European Medicines Agency regarding the drug's usage.

They said: "When deciding the recommended dosage and treatment plan, our committee has followed the drug’s licence with the European Medicines Agency. It is important to point out the drug’s manufacturer said in its submission to NICE that retreatment with lutetium was not recommended clinical practice.

"Our guidance is reviewed when new evidence becomes available which might change the committee’s recommendation. NICE produces medicines guidance for England and Wales. Scotland’s medicines are approved by the Scottish Medicines Consortium."