A virtual breast cancer community, Inspire, which I joined last year, has been very helpful. There women come with advanced breast cancer like me or their family members – from all over the world, and share their experiences, new drugs and trials they learned, or payers and encouragements.
Regarding Afinitor, which I will start next week, I learned that if the dose is over 5mg, the ladies can’t handle the side-effects, but the effectiveness doesn’t change even if it increases once it hits 5mg. Also I learned that if you take Afinitor putting it into a gel capsule with lots of water, it prevents mouth sores. That is great information and I got encouraged.
Today I read about a woman, who has been on Haraven, which will be one of a few my future medicines, saying that her big metastasized tumor in her liver shrunk into a half size and almost all tumors in her bones disappeared. She is in NY and her cancer is hormone positive and HER2 negative, which is different from mine. So her regimen with Haraven must be different from mine, but it is still hopeful and encouraging.
In the internet, there is too much information including many shady ones, but I can trust the information from the experienced cancer patients. They also give me something a doctor can’t give.
Since there are still a lot we don’t know about, but also the medicine is improving everyday, getting the right information is vital to fight against cancer. And I am thankful that I can get the hottest ones from all over the world through Inspire.