More Australians dying of myeloma, a blood cancer that causes bones to weaken
Juggling study, raising four children, and moving house all sounded like reasons as to why Bernadette Savonoff was so tired.
She spent a year blaming fatigue on her busy life, before doctors diagnosed her with myeloma — a form of blood cancer that affects bone marrow.
“I had absolutely no idea what myeloma was,” she said.
“It was heartbreaking.
“We had to grapple with the thought that could have my name on it and take me away from my family.”
The now 48-year-old's condition is currently stable, thanks to years of treatment including chemotherapy, a stem cell transplant and daily medication.
She is one of the lucky ones. Six Australians a day are diagnosed with myeloma and about half will die from the disease within five years, according to the Cancer Council.
But the way the symptoms present means many people don't know they're sick until it's too late.
Some myeloma patients call the cancer the “wellness disease” because people's symptoms are often not visible.
But the deadly cancer can have severe impacts on the body.
The disease is known to weaken bones, causing them to break. Other symptoms include anaemia, infections, and kidney damage.
Before Wendy Pfeifer was diagnosed with myeloma in the 1990s, doctors didn't think she had the cancer because it was traditionally found in older men.
“I did look well enough. I did look as if I wasn't sick,” she said.
“The fatigue and the bone pain were bad, but that was all in my mind as far as I was being told by medicos.”
Instead, the mother of five was admitted to a psychiatric ward, wrongly treated for menopause and Ross River Fever, before being diagnosed with the blood cancer a year later.
“In 1996 when I was diagnosed there was no treatment because they used to treat over-70s, they didn't treat anyone under 70,” she said.
“The treatment you were [then] given was palliative … drugs have changed dramatically.”
Myeloma is a relatively rare disease. It accounts for approximately 1 per cent of all cancers and 10 per cent of all blood and bone marrow cancers.
And while treatments and medications have improved over the years, the mortality rate is worsening.
At the moment, about 1,000 people die from the disease each year.
The number of Australians killed by myeloma is expected to almost triple by 2035, but experts say that is in part likely because more cases are being identified.
Chris Tanti, the chief executive of the Leukemia Foundation, said it was unclear why the numbers were increasing.
“But it might be because of early detection because GPs are better at picking it up and the tests are more sophisticated,” he said.
“I think people confuse or conflate myeloma and melanoma. The Leukemia Foundation did a survey of people to see if they knew the signs of symptoms of the blood cancer and four out of five people didn't know.”
Last year, Nigel and Belinda Shedden got married and moved into their dream home. Today, the couple are living with Mr Shedden's mother in small apartment.
In most cases, people who are diagnosed with myeloma have no family history of the disease and the cause remains unknown.
The most common symptoms patients experience are bone pain, persistent tiredness and increased or unexplained bleeding or bruising.
Mr Tanti said the speed at which COVID-19 vaccines were developed has given patients hope a cure for their illness would eventually be found.
The Leukemia Foundation is hoping increased awareness of the disease will encourage more money to be spent on funding research and a potential cure.
“When you think about COVID … given the money was invested in COVID and when you think about how quickly we came up with a vaccine, I think if we invest the right amount of money in the right research, we can find a cure,” Mr Tanti said.
We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn, and work.
This service may include material from Agence France-Presse (AFP), APTN, Reuters, AAP, CNN and the BBC World Service which is copyright and cannot be reproduced.
AEST = Australian Eastern Standard Time which is 10 hours ahead of GMT (Greenwich Mean Time)