Deb Fryers fondly remembers the life she lived as a film producer in Melbourne.
"I worked all my life in a fast-paced industry that I loved, travelling around the world, getting my first mortgage, a great love life, animals, friends," she said.
But after visiting the doctor with symptoms she thought were related to the flu, the 50-year-old was diagnosed with primary myelofibrosis in 2019.
The cancer causes extensive scarring of the bone marrow, leading to lowered production of platelets and increased risk of bleeding.
Fryers said the effects of the disease have been crippling.
"I've had to learn what bandages work and what bandages don't work, otherwise I tear my skin," she told SBS News.
"I get itchiness, night sweats, fatigue, brain fog. My eyesight's affected. Something people don't often talk about is my whole womanhood is gone."
Like many myelofibrosis patients, Fryers is being treated with ruxolitinib, which doctors say can exacerbate anaemia causing chronic fatigue.
"I can’t make plans … I've lost so many friendships because I'm not reliable," she said.
Deb describes Bhutan as one of her favourite countries she has travelled to. Source: Supplied
These days, she's mostly limited to Melbourne's west, living in a social housing apartment with her 9-year-old support dog, Bill.
"My death journey is completely fine, spiritually, whole-heartedly, completely fine. It's the living I find the hardest, because it's this," she said, pointing around her apartment.
'Patients will benefit enormously'
Professor Andrew Perkins from Melbourne's Alfred Hospital said it's a "common scenario".
When patients become anaemic, he said they commonly "need lots of transfusions".
"That interferes with their life, and there are complications from repeat transfusions," Perkins said.
Professor Andrew Perkins says momelotinib was developed from research in Melbourne Source: SBS News
Momelotinib is the culmination of 30 years of research by Melbourne scientists Andrew Wilks and Chris Burns.
Like ruxolitinib, the new drug controls the worst symptoms of myelofibrosis while helping prevent anaemia.
Their invention earned them the Prime Minister's Prize for Innovation last year.
"It genuinely feels like it's coming home. This is such an Australian story," Wilks told SBS News.
"The idea that patients like Deb and others will benefit enormously from taking this molecule, that's such a gratifying and rewarding thing to hear."
"My hope is it's not just going to be useful for this cancer, but also for a host of other inflammatory diseases."
Professor Andrew Wilks received a medal to commemorate his Prime Minister's Prize for Innovation last year. Source: SBS News
"Additional steps need to be completed before it can be listed on the PBS," a TGA spokesperson said.
"These steps will need to be completed for momelotinib. They include negotiation of listing arrangements with the sponsor, quality and availability checks, and consideration by government."
Still, Fryers said the approval alone is reason for optimism, saying she feels "really excited" and "very hopeful".
"It's probably the first time in a long time that I have something in my disease to look forward to," she said.
