She went to Germany for a new brain cancer treatment. She wonders why she had to learn about it online

Before last summer, Aisha Uduman seemed perfectly healthy, living in Vancouver with her boyfriend and working as a federal fisheries biologist.

But in July 2022, she started experiencing short-term memory loss, double vision, headaches, nausea, and intense pressure on her skull.

By the fall, she was diagnosed with brain cancer: diffuse midline glioma, or DMG, with a rare H3 K27M mutation.

Even after surgery removed a portion of the tumour, she was told she'd likely only have eight to 11 months to live. She wasn't expected to make her 31st birthday.

"I would wake up every morning, ask [my boyfriend] if I had a tumour in my head, and start crying. So I don't remember this happening," Aisha told White Coat, Black Art.

Some new drugs, including ONC201 and ONC206, have shown early promise in fighting this specific type of cancer compared to the standard treatment that includes chemotherapy, radiation and surgery, but they're still being studied and not yet available in Canada. So Aisha went to Germany to get access.  

Aisha, her family and some experts say patients in Canada should be made aware of these novel or experimental treatments, so they can make the decision themselves on whether to take the risk, rather than find out about them through alternative channels.

"That is a big question of mine, like, why we weren't sort of told by them that this option that's more relevant for people like me exists, just not in Canada?" she said.

After surgery, Aisha began taking temozolomide, the standard chemotherapy drug for brain cancer, along with radiation treatment.

Her brother, Dmitry Uduman, who has a degree in cell biology and genetics, learned about ONC201 after doing research of his own online.

He found trial data where some patients saw tumours regress after treatment — including one that shrunk 96 per cent — and they had the same mutation as his sister. 

"So, you know, the chances are slim, but they're non-zero, which then makes it worthwhile trying to find how to be one of those outliers," Dmitry said.

Since January, Aisha has been travelling to Köningstein, Germany, to see cancer specialist Dr. Jurgen Arnhold for treatment with ONC201. She's returning there this month for cancer-fighting dendritic cell vaccines.

Arnhold also has plans to give her another drug called ONC206 in the future, as part of a three-pronged therapy program.