Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Breaking down the barriers to clinical trials
We have a problem with clinical trials for people with brain tumors: Not enough people are enrolling in clinical trials, and many trial sites fail to meet enrollment needs required to conduct trials.
Spoiler alert, I'm still alive: 10 years later
I have had a brain tumor for one quarter of my life. I am the same person I was before but I am completely changed.
Precision medicine and brain cancer
The big question is, which trial is the right one? Will I be that unicorn patient who might live a life that is statistically longer than the current patient population? And with the cognitive decline that comes with brain cancer, would this be a kind of life I’d want to live?
Gliogene: Studying people who have two or more family members with glioma brain tumors
If you and another person in your family have been diagnosed with a malignant brain tumor (e.g. glioblastoma, astrocytoma), you might be eligible for the Gliogene study.