Cancer drug trial success after being given eight weeks to live

More than 300 people a year are diagnosed with the blood cancer myeloma. Patutahi woman Kelly Tamanui-Koia received the life-changing news while studying to become a midwife. Kaupapa Māori reporter Matai O’Connor shares her story. 

Kelly Tamanui-Koia never knew what myeloma was until she found out she had it. 

The 45-year-old Patutahi mother of four girls, who has been married to Shaun Koia for 13 years, was diagnosed with myeloma in 2021 after doing a good deed. 

She had always been a blood donor but after not giving blood for a few years due to getting tattoos, she decided to donate in 2021. 

While giving blood, she saw posters on the wall about donating plasma, asked about it and learned it was only collected in major centres. 

“I travel to Hamilton for my midwifery courses, so I thought it was the perfect opportunity to donate.” 

After her donation, NZ Blood Service did standard testing, but some unusual results came back. 

Kelly was asked to retest and was then referred to her doctor to discuss the results. 

“That’s when I found out I had myeloma.” 

She recalls feeling numb. 

“I was busy doing my stuff with midwifery in my first year and I didn’t want anything to impede on that. I didn’t feel sick,” she said. 

Myeloma, also known as multiple myeloma or plasma cell myeloma, is a cancer of plasma cells that arises in bone marrow. 

It develops when plasma cells undergo a malignant (cancerous) change and become myeloma cells. 

The doctor classed it as “smouldering” — meaning that it’s there but hasn’t quite “activated”, so no treatment was needed. 

Kelly carried on with life and finished her first year of study. 

In her second year, she received a call and was told her blood was showing the myeloma was active. 

She didn’t let that stop her from finishing her first semester exams. 

“I had to. With my four daughters, I had to show them resilience. Just because something happens of this nature, even if it’s life-altering, don’t let it stop you from doing what you actually want to do. 

“It was a tough time, though, and I felt numb to it all really as it was so unknown what was going to happen.” 

When she was diagnosed, her haematologist advised her to do an induction course of the drug lenalidomide for five months. 

Problem was that it wasn’t government-funded, meaning Kelly had to stump up the $1000-a-month treatment herself. 

Kelly’s husband was the only one of them bringing in an income. They had a bit of savings but not enough to cover it. 

But she wanted to go down the best route. 

“I decided to do it because I wanted to live.” 

Whānau and friends were quick to help. 

Kelly has a group of Hawke’s Bay midwifery friends, who told her they were going to organise a hāngī to raise money for her treatment. 

“They were amazing and helped without hesitation. It was really cool because if you couldn’t be there physically to purchase one, they would forward it on to those in need and the homeless. It was helping in two different ways.” 

They managed to raise enough money and Kelly began her treatment. 

However, before the last month of treatment began, doctors were concerned about the progress of the myeloma. 

She was sent to Waikato and stayed at the Cancer Society Lodge in Hamilton. 

Kelly had more intense treatment, which included high-dose chemotherapy, followed by stem cell transplants. 

“The chemo just totally obliterates you. I was just so lethargic and tired all the time.” 

She tried to keep active, even if it meant just a walk to the dining room and back to bed. 

The stem cell transplanting was “nuts”. 

A machine took blood from her, the stem cells were extracted from it and the blood put back into her. 

It required tubes being inserted into a main artery and she did it three times. 

“My husband would call them my bagpipes.” 

Kelly was in the oncology department of the hospital for 21 days — locked down in isolation as she had “no immune system.” 

She returned home and six weeks later had to do it all over again. 

“Mentally, it was so tough to even fathom that I would have to do that again.” 

Enough stem cells are harvested for three transfers and Kelly has used two lots. The other remains “on ice”. 

Kelly carried on with her life. But one day, after helping bring a pēpi into the world, she was informed her treatment had not worked and was given eight weeks to live. 

She can’t remember much about what happened after getting the news. She recalls going blank and somehow getting to her parents’ house in Makaraka. 

She told them and her brother — who was there for his birthday — before heading home to her husband and youngest daughter. 

Kelly was not ready to give in and when her doctor told her there was a clinical trial he thought was suitable for her — involving a six-week screening process — she replied: “Right, let’s get cracking then”. 

The following week she was back in Waikato and going through the screening, not knowing if she would get on the trial (known as magnetisMM-5). 

In September, she was accepted. 

The treatment involved a “subcutaneous injection” every week in Waikato. 

Less than 12 months into the trial, there has been no trace of myeloma cells in Kelly. 

She is back finishing her last year of studies and is excited to be nearing completion after such a long journey. 

“If this hadn’t happened to me, I wouldn’t believe it.” 

She is planning to visit her eldest daughter in Brisbane for Christmas. 

“You have those little things to look forward to, but you don’t plan too much or too far forward.” 

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