The survival rates for someone with Stacey Gardner’s condition are between 22 and 50 per cent.
Right now, Gardner is winning.
She is in remission after more than a year of battling with a malignant brain tumour.
But if her cancer returns, Gardner worries there won’t be any funded treatments left to help her fight back. An expert says one such treatment could cost up to $40,000 in the first year.
Her story comes as Pharmac announced its supplier of the oral anti-cancer drug lomustine was discontinuing its production of the medicine and the agency has not been able to find an alternative supplier. Pharmac says it is aware this would lead to “a high unmet health need for the people affected”.
Gardner, a Mount Maunganui-based mother-of-two, was at an appointment to renew her migraine medication in March 2022 when her doctor suggested a “routine” CT scan of Gardner’s brain.
“I hadn’t had one since I was about 15,” the former Rerewhakaaitu resident told the Bay of Plenty Times.
“[The doctor] said she just wanted to make sure nothing more was going on.”
The scan found “quite a large” mass in Gardner’s brain.
“Initially they thought it was a benign tumour,” Gardner said.
“So to start with I wasn’t overly concerned.”
Gardner went in for a “debulking” surgery at the end of that month and 95 per cent of the tumour was removed.
However, on examining the tumour tissue, doctors found it was a malignant cancerous growth - a high-grade glioma known as Grade 3 Astrocytoma.
Gardner was told she might only have “a couple of years” to live.
“It was pretty terrible. I kind of went into a bit of shell shock and it took a bit for me to process,” Gardner said.
“What was running through my mind was that my kids were going to grow up without me. I was going to miss out on them learning to drive a car and going to their first school ball. That was what hit me the most.”
After six weeks of combined radiation and chemotherapy treatment followed by 12 rounds of oral chemotherapy drug temozolomide, Gardner is in remission.
But she fears her cancer could come back and if it does, she won’t be able to afford a non-funded chemotherapy treatment needed to maintain her quality of life.
According to the World Health Organisation, there are more than 130 types of brain tumours. Astrocytoma is the most common type of glioma and is graded from 1 to 4.
For a high-grade astrocytoma like Gardner’s, the five‐year median survival rate can range from 22 per cent to 50 per cent, depending on factors such as the person’s age or where the tumour is located.
Grade 3 Astrocytomas also can recur within five to 10 years of initial treatment and have the potential to transform to glioblastomas, a type of tumour with a 10 per cent survival rate.
If Gardner’s cancer returns she won’t be able to take temozolomide again. By then, the only other funded option for treatment in New Zealand, lomustine, will be discontinued.
Gardner said Pharmac had widened access to temozolomide but this did not provide an alternative treatment.
“It leaves everyone without options and having to scramble for loans and funds.”
Gardner said she wouldn’t be able to afford non-funded treatment.
“That makes me concerned. Obviously, it hasn’t affected me so far but it will if I need to go back on some kind of treatment.”
Pharmac director pharmaceuticals Geraldine MacGibbon said in a statement last week the agency was aware the discontinuation of lomustine would lead to “a high unmet health need for the people affected”.
MacGibbon said Pharmac had not been able to secure an alternative supply of lomustine and stock of the drug was expected to be used up by mid-2024 if current usage levels continued.
In her statement, MacGibbon said about 70 patients took lomustine each year.
“We have received clinical advice from our Cancer Treatments Advisory Committee that temozolomide, another oral anti-cancer medicine, would be an appropriate treatment for people with glioma, given the discontinuation.”
MacGibbon said temozolomide had been funded for some time but only for people with newly diagnosed high-grade gliomas.
“We are now proposing that funded access is widened to include people with low-grade or recurrent gliomas,” MacGibbon said.
“We acknowledge this may not address the full health need arising from this situation, so we welcome feedback on other potential options.”
Brain Tumour Support New Zealand chairman and founding trustee Chris Tse said while there is no cure for high-grade glioma, temozolomide was a standard treatment.
“Unfortunately a very high proportion of these patients will have their tumours recur,” Tse said.
“They would normally be prescribed lomustine next.”
Tse said the discontinuation of lomustine left some patients with no second-line treatment.
“There is another treatment which is not funded,” Tse said.
“That one is called is bevacizumab, commonly known by its brand name Avastin.”
Avastin has been a funded treatment for brain tumour patients in Australia since 2019 but is not funded in New Zealand.
“We have a lot of people who would like this drug but because they can’t afford it, they can’t get it.”
Tse said the cost of Avastin itself and the fact that it would need to be administered intravenously in a clinic meant the drug was out of financial reach for many.
“People could be paying $1800 every two or three weeks depending on their treatment plan. It could cost anywhere between $30,000 to $40,000 in the first year.”
According to Tse, if Pharmac could not find another treatment alternative for lomustine, some patients would have no option but to pay for Avastin.
“The main benefit of lomustine and Avastin is the much better quality of life,” Tse said.
“It basically allows the patient to get up, go for walks, ride bikes, go back to work.”
Tse said his organisation was continuing to petition Pharmac to fund Avastin.
“What our patients are telling us is that they want more funded treatment options, not less. They would like both lomustine and Avastin to be available if possible.”
Tse is also a senior adviser to the International Brain Tumour Alliance and a patient expert in central nervous system tumours for the European Medicines Agency.
His wife Lynda is a long-term survivor of glioblastoma.
Pharmac’s MacGibbon told the Bay of Plenty Times bevacizumab, branded as Avastin, for people with relapsed recurrent high-grade gliomas was considered by a committee meeting in April.
“The records of this meeting will be available soon.”
“We appreciate that temozolomide may not address the full health need arising from the discontinuation of lomustine for some people ... ‘‘
Maryana Garcia is a regional reporter writing for the Rotorua Daily Post and the Bay of Plenty Times. She covers local issues, health and crime.
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