I am also looking for long term survivors. My husband was diagnosed in October with GBM. He had the tumor removed in surgery, and is currently in middle of a focused radiation and Temedor regimin. he also takes Kytril to prevent nausea, and Keppra to control seizures. When he eats, sometimes he gets a little twitching, so he stops for a moment until it passes. He kept gettting smaller seizures, but found out that by spreading out his Keppra instead of just morning and evening, he can prevent them. We also discovered that he can stop one that is beginning to start by taking Keppra right away. He is also taking a low dose of Decadron. We were hoping to get on Avastin as well, but there were no cells left from the tumor, which were needed to be in the clinical trial. We also can't go off label, as the drug is apparently temporarily unavailable for off label for now (at UCLA)
He seems to be doing pretty well, but has fatigue and hair loss. He also seems a little weaker, as his hands aren't as steady. But he has a good attitude and we will fight this. He does occasionally get cranky, and is a little harder on me and our daughter, but is very friendly and courteous to everyone.
I am hoping things change and we can to take Avastin before the GBM reoccurs, as I hear this drug has been very beneficial to colon cancer patients.
A couple of things I have learned -
do your research - the first hospital said it was inoperable. We then went to UCLA and it was successfully removed.
Keep informed, and dont be afraid to ask a lot of questions. It is super important to have a patient advocate, ( I am for my husband) to keep an eye on what happens in the hospital, and keep things straight (ie - NO dilantin, if you want to be eligible for certain clinical trials. I had to be adamant about that with some doctors)
My husband yearns to be normal, and have fun watching football on TV with his friends, without getting grilled with tons of questions about his treatments. He prefers to leave that up to me. Dont know if other patients have those types of feelings or not.