I just found this site and I am very excited to start reading what everyone is talking about.
I wanted to encourage people to try and not give up. This is a devastating disease for the whole family and friends. I hope my husband's journey so far might help someone.
My husband was diagnosed with a GBM in his right front lobe 4-1/2 years ago. He had to crainiotomies in 36 hours and had 2 strokes during the surgeries which effected his eyesight. He doesn't see very well and wears sunglasses in the house. We
were told he wouldn't make it through the end of the week. He also developed Hydrocephelus 2 months later and a blood clot in his lung. After all this he did radiation and then 16 rounds of Temodar. The cancer disappeared for 1 year and then recurred. He then went on Avastin/CPT 11 through a clinical trial. After 6 months he was so sick from the CPT 11 that he stopped it but they kept him on the Avastin for an additional 11 months for a total Avastin trial of 16 months. He developed high blood pressure when he went off the CPT 11 and almost had to stop the Avastin. We eventually got it under control with 3 high blood pressure medicines. We are now slowly weaning him off. It took over 4 years to get him off the decadron but we never stopped trying with the help of his doctors.
I don't know what will happen next but I am glad he has kept fighting so far because I think he will get to see our last child graduate from High School in June.