Ask HN: How to Find the Best Info on Cancer Treatments?
I went through this - I was a caregiver for my partner who was diagnosed with GBM. It's a terrible disease, and by terrible, I mean most people have no idea. It's one of the diseases with an extraordinarily poor outcome ratio (under 5% past 2 years, depending on age, young people might be at 25% two years 5% three years) and terrible end of life scenarios. I can only hope that your family member is fairly old, it's a heartbreaking disease for someone young.There is a standard treatment path for GBM. whole brain radiation with temodar, then a few other choices on recurrence. Any regional hospital / cancer center can do this.If your family wants to get more aggressive, they have to get into one of america's cancer centers. For GBM, I remember UCSF, UCLA, MD Anderson, Duke, Sloan Kettering, Boston Women's ( Mayo never came up for GBM in my research but maybe I'm misremembering ). My method for finding these centers is to scrub the clinical trials database and see who is offering what trials.In terms of how to ingest all the data --- I'll tell you what I did. I sat in UCSF's library for two days and read like a demon. I read all the articles on GBM going back 20 years, and when I didn't understand a term of concept, I pulled a textbook. As a "hacker" you'll find drilling down on one disease isn't _that_ much information. I was then capable of having realistic and high bandwidth discussions with all of the doctors involved, including some of the nations premiere neurooncologists.Right now, interesting clinical trials focus around immune system treatments (monoclonal antibodies). That wasn't around when I did my thing, and my info is all out of date.If you live in the bay area, you might have a friend at Genentech. You should scrub your linkedin friends. They're at the front of most oncology research, and main HQ is at the oyster point office.Your local doctor(s) won't like moving to a regional cancer center. It's a terrible fact, but they'll tend to drag their feet, tell you won't get personal service, make record transfer difficult, and claim they can do the same treatments at home. Part pride, part truth, part profit motive.