My brother in law was diagnosed with the same grade GBM, over a year ago. He was given 4 months to live & told his tumor was inoperable. He traveled to NYC the day after diagnosis trying to seek consultation with some of the top neuro-oncologists in the world at NYU, Penn, & Sloan Kettering (where the surgery was performed).

He was 32 at time of diagnosis, he's an inspiration to me every day to persevere through any of my struggles that I perceive as difficult.

My advice, which was my sisters strategy in keeping her husband alive, is to get as many opinions as possible about the most aggressive treatment strategies available (depending on tumor location, etc) and formulate a plan to try and eliminate as much of the tumor(s) as you can. The occurrence rate on these grade tumors is insane, try anything you can to get into an amino therapy clinical trial, or any other trials that they may be eligible for. My brother in law participated in the MK-1775 trial.

I built a little WordPress site for him: youcanthurtsteel.com

Please email me, or message me if you have any questions that I can answer from my perspective & I'll do my best to convey what my family has learned about this terrible disease.

Here's a youtube clip: https://www.youtube.com/watch?v=8Fo2uNqKMR8

Also, http://www.voicesagainstbraincancer.org/ is one of the best foundations that you can help raise awareness for. He's become an advocate for their cause, http://www.voicesagainstbraincancer.org/james-j-hanson-bio/

Your friend, Nick

user:	klufas
created:	August 30, 2015
karma:	15