The Voices


Mantle Cell Lymphoma

Today, Tuesday 26th October, James is in a hospital prepping for a stem cell transplant.

In the process, he will lose his immunity and be incapable of fighting off any bacteria or virus. He’ll be kept in isolation in a pressure room to make sure air can leave the room, but germs can’t filter in. 

Delta adds another layer of complexity to an already invasive procedure.

“It’s up to the doctors to keep me alive. Sadly, we’re living in a world with a virulent bug going around that’s trying to hurt us. It throws a bit of a spanner in the works.”

James isn’t sure how long he’ll be in hospital, but he’s been told it could be up to a month.

“How do I feel? Honestly? I’m terrified. Absolutely terrified,” he says.

James is 51 years old, married to Carlene with two teenage daughters. He’s a successful, well paid, highly regarded IT consultant and by his own admission he “lives well” on Auckland’s North Shore. He keeps fit playing squash and, when his health allows, he can usually squeeze in a few games a week.

“I love it, it’s a great game.”

In March, James felt a bit tired but otherwise life was going well. Really well. The following month, a phone call from a doctor turned his life on its head.

“It’s not until you get a diagnosis like this that you realise cancer isn’t a singular disease. It affects everyone around you. It’s been incredibly tough on my wife and when we told our two daughters…. well, that was a very tough day. Very tough.”

James says, in hindsight, he can now recognise the symptoms.

“I was struggling to keep up when I played squash. I thought it was probably because I was getting on a bit, so I put it down to age.”

James assumed the swollen lymph nodes under his jaw were the start of a newly acquired double chin, but it was a numb sensation in his bottom lip that ultimately led to a GP’s appointment, and a diagnosis.

“My bottom lip would go numb if I sat on the couch and leaned back. It was the weirdest thing. And if I went to sleep on my back, I would wake up with the same sensation.”

He began to get strong cramps in the upper part of his abdomen and, after a stint on Google, he thought he might have gallstones. His GP agreed and sent him for an ultrasound.

“That was when we started to find out what was going on.”

The sonographer couldn’t get a clear view of James’s gallbladder and sought a second opinion. Then a third specialist was called into the room.

“I knew at that stage the news probably wasn’t going to be good.”

They found a lump in James’s abdomen, later identified as a 13 x 8 x 11 cm mass of swollen lymph nodes. It was pressing on either nerves or his blood supply, causing the numbness in James’s face. His spleen was double its normal size, and tests showed that 80% of his bone marrow was cancerous.

James was diagnosed with Mantle Cell Lymphoma, a form of blood cancer that develops in the lymph nodes.

“I’m young to have this cancer and I guess I’m lucky because it’s the indolent form which means it grows and spreads slowly. It can switch to aggressive, but for the moment, it’s the slow version.”

Since his diagnosis in April, James has undergone surgery, and six long and taxing cycles of chemotherapy. Each session is around three to four weeks apart. Ultimately, it’s hoped the chemotherapy will destroy the cancer cells and this week, after months of treatment, a CT scan showed no evidence of disease.

James is optimistic but also realistic. There is no cure for Mantle Cell Lymphoma. It will come back.

“That’s why we do the stem cell transplant. It will get any cancer we’ve missed in the bone marrow, and hopefully put me into remission for somewhere between 2 and 10 years.”

Six weeks ago, in readiness for the transplant, James was hooked up to a machine for hours on end, and his blood was siphoned to remove his stem cells.

“It was a hard day. I came home that night and I cried. It broke me.”

This week will be a lot tougher.

James will start ‘consolidation therapy’ which means he will undergo six intensive sessions of chemotherapy, positioned 12 hours apart. He’ll suck on ice to ease the onset of an ulcerated mouth, and it will hopefully quell any nausea and gastro-intestinal upheaval.

“By the fourth day I’ll be feeling pretty average. The poison will be all through my system, but it should destroy any last cells of cancer.”

The following week, James’s stem cells will be defrosted and infused back into his body, eventually restoring his immune system and his body’s ability to produce blood cells and fight infection.

It is the standard treatment for Mantle Cell Lymphoma and is performed all over the world. Usually, when the cancer returns in the years ahead, patients are treated with what’s called a ‘second line’ treatment.

“…and this is sadly where the story takes a turn for the worse in New Zealand.”

New Zealand doesn’t fund a second line treatment.

For more than half a decade, a drug called a ‘BTK Inhibitor’ has been used to target and kill relapsed Mantle Cell Lymphoma. It targets cancer cells and inhibits their growth. In James’s case, it’s likely he would be treated with Ibrutinib which has proven highly effective at putting the cancer back into remission.

It’s a drug that is publicly funded all over the developed world, but it’s not funded in New Zealand.

The list price for Ibrutinib is almost $15k per month although Pharmac, New Zealand’s monopolistic drug-buying agency, is a good negotiator. It seldom, if ever, pays the list price for a drug.

In 2015, a funding application for Ibrutinib was lodged and approved for use by Medsafe, and was recommended for funding by Pharmac’s expert team of oncologists.

Six years on, Ibrutinib remains on Pharmac’s list of unfunded medicines. Tragically, New Zealand now sits at the bottom of the developed world for access to modern medicines, and has the lowest per capita pharmaceutical spend of the OECD.

Pharmac has been chronically underfunded by successive governments for more than a decade, and New Zealanders are now paying with their lives.

For Carlene, it has been the most brutal of realisations. She is concentrating on supporting James throughout his treatment but is fearful of the implications of a relapse.

“This is very raw to me. To put a price on a life in this way, it’s so distressing.”

“I struggle to describe the emotions I feel. On every single level this is wrong. When you see where the Government is putting money and yet they don’t fund modern medicines to treat New Zealanders, to help people… did we get here?”

Carlene says if she has to pack up her family and move to Brisbane, she will, but it will come at a huge emotional cost.

“If James relapses and we leave New Zealand, we lose a lot. Our friends, our family, our support. It’s immense. It’s overwhelming to think about packing up our lives when the cancer comes back.”

James, despite his diagnosis, describes himself as “lucky” because he has Australian citizenship. Across the Tasman, the second line treatments for this disease are fully funded, but he says moving to Australia would be the last resort. 

“I live here. I’ve raised my family here, I love it. I’ve paid a considerable amount of tax in this country, and I contribute to the economy. I don’t want to relocate to Australia. This is my home.”

It’s believed up to 90 New Zealanders suffer from Mantle Cell Lymphoma and while James is grateful that Australia provides him with a lifeline, he believes every New Zealander should be able to access modern treatments.

“You only find out how far behind we are when you’re staring down the barrel of a gun. Modern medicines are a part of everyday society. You have to look after your citizens.”

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New Zealand needs access now to modern medicines to treat Mantle Cell Lymphoma.

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Achieve a measurable, political commitment to reform Pharmac and create a fit-for-purpose drug-buying agency that supports and enables greatly improved access to modern medicines – and ensure a direct line of political accountability.




Introduce a globally accepted modern, cost-benefit analysis for medicines and medical devices which looks at the ‘value’ of a medicine, and considers the financial, economic, and social impact of untreated disease on our society.




Develop a Medicines Strategy to guide the decision-making process, create measurable targets to reduce Pharmac’s waiting list, and detail how the agency will respond to rapid developments in modern medicine to improve health outcomes for New Zealanders.

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