"They said, 'terminal condition', 'there is no cure', 'we can offer you chemotherapy which has a 15 per cent success rate which would extend my life by about a month', I said 'yeah, is there anything else?'."
When the Tauranga woman was first diagnosed, in 2013, trials for Keytruda had just started.
Keytruda hit headlines recently with Kiwi cancer patients calling on Pharmac to fund the drug.
Read more: Petition targets access to life-saving drug
Mrs Speight did her homework and was fortunate to gain access to a trial for MK-475, now called Keytruda, through Merck Sharp and Dohme, but as a control on the drug Ipilimumab.
Mrs Speight flew to Wellington four times every three weeks yet her disease continued to progress. Ipilimumab did not work, she continued to get sicker and she was taken off the trial.
In August last year, another drug company, Bristol-Myers Squibb, released a similar product to Keytruda - Nivolumab, or Opdivo by its shelf name.
"It does exactly the same thing as Keytruda, different name, different company but same action in terms of the immune therapy."
Mrs Speight applied to take part in a compassionate access programme - a sort of trial paid for by the company
She has now been on the drug since September last year and credits it with keeping her alive today.
"The first six months there was huge progress, I am at a stage now where it is holding everything stable."
Mrs Speight said she could see all angles of the Keytruda debate.
Many people could not afford it but Pharmac had a limited budget and spent it where it was deemed most necessary.
"The only problem is it's blinking expensive. How do we get people access to the stuff that actually works?"
If she were to pay for the treatment it would cost her $10,000 every two weeks plus the administration fees, she said.
"As a country we need to think through, 'is there some kind of process by which we can ensure all New Zealanders have access to these drugs without bleeding the country dry?' It's a tough one, I would hate to be in Pharmac's shoes right now.
Pharmac operations director Sarah Fitt said the company understood the strong interest people had in getting access to medicines for melanoma.
"Pharmac has been looking at the class of medicines that Pembrolizumab (Keytruda) and Nivolumab (Opdivo) fall into, known as PD-1 inhibitors.
"However the data is, at present, not conclusive regarding the magnitude of benefit and whether these benefits are durable.
"Our role is to look carefully at the clinical evidence to see what the benefits of these medicines are and if they will deliver better health outcomes for New Zealanders."
No decision had been made yet as to whether Pembrolizumab would be funded or not and Pharmac had not received a funding application for Opdivo.
Bristol-Myers Squibb head of public affairs Karen Barfoot said the company had a broad, global development programme to study Opdivo. More than 8000 patients had been enrolled worldwide and the drug was now approved to treat several types of cancer in the US, Europe and Japan.
Bristol-Myers Squibb continued to hold constructive discussions with Pharmac, she said.
Medical director of the Cancer Society of New Zealand Dr Christopher Jackson said Keytruda and Opdivo were the same drugs, "Pepsi verses Coke really".
It was clear these drugs were more effective than anything he had ever seen before for advanced melanoma, he said.
However, there was not enough long-term information at this stage to say if the drugs could cure melanoma in the future.
A small number of people who took Ipilimumab had gone into very long-term remission. Dr Jackson said it could be the same for patients on Keytruda and Opdivo but there was not enough long-term data yet.
"Studies have showed 70 per cent of those who have the drug show some sort of response.
"The average improvement with the drugs is many, many additional months, and for some people longer than that. Some people have gone into remission and still are."
The drugs were expensive to buy because they were expensive to develop, he said. Studies could cost upwards of hundreds of millions of dollars and were high-risk endeavours for companies.
Sarah Speight was just one of 3000 people in New Zealand diagnosed with melanoma each year. Of the 3000 diagnosed, 350 of them would die of advanced melanoma every year, he said.
Sarah Speight said she was living proof the drugs showed results - "I'd be dead by now".
The tumours were still there but were a lot smaller. They were originally measured in centimetres but were now measured in millimetres, she said.
"I said to my oncologist, 'I need five years to get my children through school'. She said, 'I can't give you five years'.
"The average extra life span you get from these drugs is 22 months. If you compare it to chemo which is six weeks, that's huge.
"I would love for longer of course. That was my bottom line.
"I said to myself that day, 'Ok things are pretty grim I need to find a way to hold on for five years. I am not leaving my children without a mother until they have finished high school'. Hopefully by then there will be another drug... all I am doing is buying time."
-For more, see page 2
