Cathy’s symptoms were fatigue, diarrhoea and anxiety.
Do you know the symptoms of neuroendocrine cancer?
Home » Patient Stories » Cathy, QLD
Cathy’s symptoms were fatigue, diarrhoea and anxiety.
Do you know the symptoms of neuroendocrine cancer?
Von Hippel-Lindau was explained. Genetic testing was sent to Western Australia. My mum Toni, 2 sisters and I all had VHL. I have two children, both Boys. They both have VHL, Belzutifan could change their future
I hope that Belzutifan will be easily accessible in Australia soon because if it does not, it would mean that eventually, my family would have to permanently live in America so that my son Billy, who also has VHL, could take this medication as well when he would need it.
I urge the Australian Government to place Belzutifan on the PBS. If we can minimise the tumour growth, if not reduce the size, that then reduces the chances of needing surgeries and that reduces the impacts of potentially more disabilities. I’m pretty stuffed as it is. I don’t really want to get any more.
If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.
NeuroEndocrine Cancer Australia is calling on our community to help improve the lives of Von Hippel-Lindau (VHL) patients in Australia.
VHL is a rare genetic form of neuroendocrine cancer.
We need the help of the Australian community to put Belzutifan onto the PBS list.