MEDICINAL cannabis products should be more readily available, the partner of a brain cancer patient says.
Bendigo businesswoman Sonia Brit Tavener has been using medicinal cannabis oil as part of a clinical trial for Glioblastoma multiforme patients.
She is having to re-introduce the oil into her system, after several weeks of interruption to the supply.
Sonia's partner of more than 20 years, Brian O'Bree, says the Canadian company producing the oil used in the trial was taken over by a larger company at the start of the year.
Brian believes the company was caught up in red tape, affecting the Australian trial's supply of product.
An Australian medicinal cannabis oil has since been sourced. But, after several weeks of low to no intake, it's like starting over for Sonia. She has dubbed this 'phase two'.
"I'm very tired, can be very shaky, and I have to rest as much as I can," Sonia says.
"As soon as I get to the right level - I'm not sure how much that will take - then my body will get used to it slowly.
"At the moment I'm not feeling great but I'm still positive... I know I can get through this bit."
She expects it'll be a few more months yet before she's feeling better.
Sonia's supply of the Canadian oil started running low about midway through her involvement in the trial.
Brian says he and Sonia lowered the dosage to make the oil last as long as possible. But, after two weeks, it ran out. For 10 days, there was nothing.
"We were pretty stressed about that, to say the least," Brian says.
Sonia received her first bottle of Australian oil about the start of this month.
Federal and state laws provide eligible patients access to medicinal cannabis. But regulations remain stringent, particularly on importation.
'Kind support' enables trial participation
A BENDIGO business owner, artist and designer has credited community support with enabling her to access a clinical trial she hopes will save her life.
Sonia Brit Tavener - known to most by her brand, Sonia Brit - is doing battle with an aggressive form of brain cancer.
Close friend Lauren Mitchell established a Go Fund Me appeal in Sonia's name in February to help fund her cancer treatment.
The support that has since flowed Sonia's way has come in many forms - from donations via the website, to people popping by Bob Boutique in Bendigo to buy items and pass on kind words.
Sonia said friends and family working at the store had been overwhelmed by people's positivity and support.
"It has just been incredible," she said.
Sonia became involved in a clinical trial for Glioblastoma multiforme patients the same month the Go Fund Me appeal went live.
The trial involves the use of medicinal cannabis oil, and is run out of the Prince of Wales Private Hospital in New South Wales.
Sonia has had to spend most of the past three months interstate, to be close to the hospital.
"We wouldn't have been able to do it without the kind support of everybody," she said.
Her partner of more than 20 years, Brian O'Bree, put it more bluntly: "We would have been stuffed."
"I don't know what's going to happen in future, but at least we can do [the trial]."
He has had to purchase leave from work to support Sonia through the clinical trial.
"If we could have done the same trial here, we would have," Brian said.
But neither he nor Sonia are complaining. They have an opportunity to be involved in what's understood to be world-first research - research they are hoping will make all the difference, for them and for many others.
This is not Sonia's first battle with brain cancer. A tumor was first discovered in 2012.
Having found the tumors had grown back, Sonia was offered what she called 'conventional treatment' - a combination of surgery and chemotherapy.
She said she wasn't afraid of going down that path until she realised the risks involved in the surgery and how little time 'conventional treatment' might buy her.
"So Brian and I, I'd already done a lot of research for alternative treatments. Brian was tirelessly following up on everything," Sonia said.
They came across the particular trial in which she is now involved shortly before Sonia was due to undergo surgery.
"We were very lucky to get in the trial - there was a waiting list," Sonia said.
Brian said his partner's dedication to a healthy diet and exercise positively contributed to her selection for participation.
"She really, really wants to do this while she's strong enough to do it," he said.
Sonia's most recent tests showed the tumors had remained stable, compared with her scans about six months earlier. Even though her intake of cannabis oil was affected by difficulties accessing the product for several weeks.
"These tumors don't stand still, they're very aggressive," Sonia said.
"They basically told me it was good news."
She was hoping further scans would tell her the tumors were receding.
The test in which Sonia is involved is still underway - the results are not yet known.
Sonia believed the cannabis oil worked for some people and didn't work for others.
"The positive result from the MRI [scan] gives me hope," she said.
"The plan is to just rest and get as much good food in and as much light exercise as I can and just hit this as hard as I can.
"I'm just going to remain very positive and keep on the treatment."
Sonia said she wanted people to know how amazing the support she had received had been.
She asked that people keep their fingers crossed for her and thanked them for all they had already done.
"I hopefully will be back better than ever," Sonia said.
To support the Go Fund Me appeal, visit gofundme.com and search 'Sonia Brit Tavener's cancer treatment appeal'.
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