Sarona Rameka outside Nukuhau Marae. Photo / Supplied
Sarona Rameka wanted to know: would chemo save her life? The oncologist's answer was a very blunt 'no'.
The Taupō woman had stage four cancer - an untreatable tumour the size of a small rugby ball occupied her chest.
Sarona and husband Vernon Rameka were joyfully anticipating the arrival of their baby Pepe Lili. But the couple's world was shattered when, at 37.5 weeks pregnant, Sarona was told the bleak news - a 19cm tumour was growing in her chest, lung and heart.
Vernon's mind went straight to thinking about what life would look like without his wife. He says it was one of the scariest times in his life.
"We found out just before our baby was born. Everything was thrown at us at once."
Sarona could have opted for the chemotherapy, and it might have prolonged her life.
But, the self-confessed lover of chocolates and lollies instead chose to try a strict keto diet and fasting.
"The only ending with palliative chemo was death. If I had six months left, I couldn't have my children's last memory of me suffering the side effects of chemo."
Roll forward three years: today the tumour had shrunk to 96 per cent of its original size and Sarona's remarkable case notes have been viewed more 18,000 times in online medical journal Frontiers in Oncology.
It is not a cure. While some oncologists are supportive, others remain sceptical.
And Cancer Society medical director Dr Chris Jackson has misgivings, saying extreme dieting and starvation can be harmful for people with cancer and that diet strategies to treat cancer remain experimental and not recommended without specialist input and oversight.
The suggestion that Sarona try a ketogenic diet and fasting to boost her immune system to help fight the cancer came from Sarona's Waikato Hospital neurologist, Dr Matthew Phillips.
Sarona was already under Dr Phillips' care due to an underlying autoimmune condition, myasthenia gravis. Not long after her cancer diagnosis, Sarona thought there was no point in going to a scheduled appointment with Dr Phillips, but went anyway at Vernon's urging.
"I have a very strong Christian faith and was certain that doors would start opening for me," said Sarona.
Dr Phillips has led two world-first studies to investigate the effects of a ketogenic diet for Alzheimer's and Parkinson's patients. Sarona was willing to try a keto diet too, and working with nutritionist Deborah Murtagh, she began her first fast. It did not go well.
"I wound up in hospital because the fasting set off the myasthenia gravis. In hindsight, this was a visible marker that the fasting was boosting my immune system."
It was decided to treat the myasthenia gravis with regular blood transfusions, and that meant spending all day in hospital.
"The nurses there are so lovely. My beautiful friends."
As well as the keto diet and fasting, Sarona was having blood transfusions every three weeks. Then it dropped to every six weeks, then every eight weeks. By the end of the first year transfusions were needed only every three months.
The first year was rough on the family. Sarona was so sick that her parents had to travel up from Christchurch to tag team looking after Pepe while Vernon cared for Sarona and their other children Arahia Kahura and Mack Rameka.
But two years after her diagnosis, Sarona's tumour had not grown. She was mainly well in the second year and she and Vernon were able to look after their children.
Then disaster struck. The myasthenia gravis returned with a vengeance and Sarona spent three months in intensive care. Vernon says Sarona was so sick in May last year that she spent weeks on a ventilator and couldn't move.
"Our first position is always that we will hold with our faith that Sarona will get better. And this is what we told the kids."
Sarona rallied. A month after getting out of hospital, she had a chest X-ray as she was feeling a rattle in her chest. The results were unexpected.
"We were all pretty shocked when we found out the tumour had 96 per cent gone.
"Everyone was asking how this had happened? It could have been the combination of fasting with the octreotide and prednisone drugs I was on while in intensive care."
In his case notes, Dr Phillips said Sarona was diagnosed with an inoperable type AB, stage IV A thymoma cancer.
"For two years Sarona pursued a metabolic intervention of fasting combined with a keto diet. This was the primary management strategy for a metastatic cancer in the absence of surgery, chemotherapy, or radiotherapy."
The fasting and the keto diet caused two relapses of Sarona's autoimmune condition, however, after each relapse it was found her tumour had shrunk.
"The first relapse was followed by a 32 per cent decrease in tumour volume over four months, the second relapse by a dramatic 96 per cent decrease in tumour volume over four months."
Dr Phillips hypothesises that two years of fasting and ketogenic diet therapy metabolically weakened the cancer, setting the stage for immune activation and extreme energy restriction to destroy the majority of cancer cells.
Dr Phillips noted that prednisone-induced apoptosis (programmed cell death) also played a role during the second relapse.
"The culmination is a near-complete regression. Nearly three years after being diagnosed with inoperable metastatic cancer, our patient shows no signs of disease and leads a full and active life."
The past year has been like a miracle for Sarona and her family, although she says she has been enjoying herself a bit too much and not going hard enough on the fasting as the tumour has grown 15 per cent. She fasts for seven days each month and says it's like running on 70 per cent energy.
"I still cook for the family and drive them around. I go to bed early and don't do strenuous exercise."
Vernon says Sarona's treatment is a lifetime strategy and even if the cancer is gone he and Sarona will continue with a keto diet and fasting.
"For us, keto is not a diet, it's a lifestyle. My fasts are for just a few days but after a fast I feel so refreshed."
Sarona says it is not her goal to turn other cancer patients away from what they are doing.
She simply wants to share her experience of alternative management of cancer to those who have no option other than palliative treatment.
From the outset, Sarona said she had a prophetic vision she would live. Now she wants to share her story and give others hope. A website followed, www.saronarameka.com, and she and Dr Phillips have a public speaking engagement at Taupō's Great Lake Centre on October 22.
"I have faced scepticism, that's fine. People should do their own research. We did ours."
As for goals for the future, Sarona says things are different for her and her family now.
"Having your life expectancy challenged has been an eye-opener. Now our focus is very much on family. I also want to share this experience."
The big question is whether a keto diet and fasting can be beneficial to other cancer patients. Cancer Society medical director Dr Chris Jackson says cancer and its treatment places extra demands on a cancer patient for energy, protein and nutrients, and eating well is even more important at this time.
"The Cancer Society would be concerned if there was wide adoption of restrictive dieting while undergoing cancer therapy as this could impede recovery and worsen outcomes," said Dr Jackson.
Dr Phillips said the reaction from other health professionals, particularly oncologists, has been mixed.
"Several oncologists in the DHB are supportive of this approach, and a few strongly so, as it is low-risk and potentially high-benefit for other cancer patients.
"Several oncologists are more cautious, and a few may be sceptical; however, given the low-risk nature of fasting and a diet alteration, to my knowledge none are opposed."
He says it's good that some people are sceptical.
"If you had shown me the paper five or 10 years ago, I myself would have been sceptical," said Dr Phillips.
Fasting, Keto & Cancer will be held on Thursday, October 22, at the Great Lake Centre Taupō at 6.30pm with speakers Sarona Rameka and Dr Matthew Phillips. Tickets are $5 at Taupō Medical Centre, Kefi, Great Lake Physio, Bin Inn, Health 2000, Raw Balance, and He Akina. Taupō Medical Centre has donated tickets for those who want to come but cannot afford it, please inquire at Taupō Medical Centre.
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