Keytruda transforms Katikati cancer patient Roy Nugter’s days after community gives gift of life

Roy Nugter is “living life again” in spite of a rare cancer doctors warned could claim his life within a year.

The Katikati father attributes his recovery to the unfunded “miracle” drug Keytruda and the community donations that are helping to pay for it.

In 2018, he was diagnosed with stage 4 squamous cell carcinoma of the lungs, aged 55.

Doctors gave him less than a year, without treatment, to live or one to three years with chemotherapy.

For $100,000, Keytruda — a treatment that could help his immune system fight the cancer — was also an option, Roy says.

Except, financially it was not.

Pharmac funds Keytruda for some cancers, within certain eligibility criteria. Some skin and lung cancers are included, but not the type Roy has.

He used to take home more than $1000 a week as an industrial cleaner. Now he survives on a sickness benefit. Wife Debbie worked part-time until a family tragedy this year forced her to give up her job to look after her injured mother, in addition to the couple’s 10-year-old son Kobie and Roy. Together, they get by on $350 from the benefit and superannuation.

Roy spent four years on and off chemotherapy but in the past year, his lungs, brain, trachea and area near his spinal cord became riddled with tumours. He has since lost most of the use of his right hand and has limited use of that arm.

Four months ago, Roy now 60, put pride aside and shared his story in the Bay of Plenty Times, desperate to live long enough to watch Kobie grow up but fearing he would not make it to Christmas without Keytruda.

His plight captured the hearts of many, who contributed to his fundraising efforts, making it possible for him to finally access the “miracle” drug.

These days, he looks and feels “so much better”, he says.

“It’s working. I’m doing really good,” he told the Times.

“Since we last spoke and you did that story, the donations rolled in. I think $22,000 in a week — from that [May 13] story,” he said.

A Givealitte page had raised more than $61,000. Another $10,000 has been raised separately.

He said he was advised to wait until he had $100,000 to fund the recommended full course of 10 rounds of Keytruda, but deteriorating health prompted swifter action.

“[The doctor] said it was now or never,” Roy says.

“We don’t have all of the money but we will work on it.”

After three months of Keytruda, he says he feels like a different person. He has lost weight, regained his hair, and has more energy than before.

“Not a huge amount, but enough to start living life again.”

He had “extremely positive” results from the first three treatments, particularly for his brain tumours.

“There’s some bits that have shrunk, some quite dramatically.”

Roy Nugter, pictured in May, is fighting to stay alive for his son Kobie, 10. Photo / Alex Cairns

In his lungs, the cancerous “spots” have virtually gone, Roy says.

They are “incredible” results made possible by the kindness of others.

“I just want to thank people. I really do.

“It was a dream to think I would get it. In reality, I probably thought I’d never raise enough money. So to do that and actually have the drug is just amazing.”

Roy’s newfound energy has him back playing bowls, kicking a soccer ball around with Kobie again, walking the dog regularly, helping more with household tasks.

“When you have been ill as long as I have, you tend to go into a routine — get out of bed, and sit in the chair..

“I think the treatment has made me feel better physically and mentally. Mentally, I’m thinking I’ve got so much to live for, you know? I need to get back into doing stuff.”

“It’s hard to explain that for so long you think you are going to die and now all of a sudden I believe I’m going to live.”

He still needs $18,000 to fund the full course of treatment.

In addition to the Givealittle page and passing out leaflets about his situation, Roy has written letters to politicians and considered selling the house but did not want to leave his family potentially homeless. Health insurance helped but was not enough to fund Keytruda.

Despite all this, the family has been buoyed by the indefatigable Katikati community. A local gala event involving about 20 volunteers raised about $7000.

He says such support has “without a doubt” kept the family going and he owes his life to those who have donated.

“When you see people giving all of that support, you want to win for them. It’s not just yourself that you are fighting for anymore.

Roy Nugter, pictured in May, with a family photo (left to right) Glenda Hart, Roy, son Kobie, Debbie Nugter and Dave Hart. Photo / Alex Cairns

“I wouldn’t be here without them.

His voice quivers and suppressed tears spill over.

“You can thank people as much as you like but that doesn’t actually tell them how you actually are, how you actually feel. What they’ve done for us is mind-blowing.”

As Roy pauses to compose himself, Debbie adds: “For so long we’ve had bad news — ‘This is worse’, ‘that’s worse’, every scan.

“To actually be told you’re getting better, it’s like ‘really?’”

Debbie says she was shaking “waiting for the bad news” before seeing the scan results.

“I should not think like that but because we’ve had so much bad luck … I also think ‘what a wonderful thing that people have given us’.”

In January, Debbie’s father David Hart, 72, was killed in a horrific crash near Athenree. Her mother Glenda barely survived.

It came after other recent family deaths and Roy’s near-fatal brush with a sepsis infection.

He says doctors have told him the Keytruda “is the last option”.

“If this doesn’t work, there’s nothing else.

“I’m going to stay alive as long as I can.”

Kiri Gillespie is an assistant news director and a senior journalist for the Bay of Plenty Times and Rotorua Daily Post, specialising in local politics and city issues. She was a finalist for the Voyager Media Awards Regional Journalist of the Year in 2021.