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!

Liz Salmi 8/28/22 Liz Salmi 8/28/22

I am the population now: The tale of a brain cancer “n of 1”

There exists no population-level evidence that taking the drug for that length of time is beneficial to the overall survival of people living with my disease.

The diagnosis & plan: grade 2 astrocytoma, radiation & temozolomide

I still have a grade 2 astrocytoma. This is great news, however if the last few months tell us anything, despite pathology and all the science my tumor is not behaving like other grade 2 astrocytomas. This is what continues to worry us but we take the positive and move forward.