My husband was diagnosed with a GBMIV in May 2002 after some really bizarre symptoms. He had been to several doctors and all told him it was stress. I got tired of it all and went with him to the Dr. By then he had siginificant weakness on the left side and trouble with coordination and extreme fatigue.
The tumour they found was 7cm and a resection was done within 5 days of the CT scan that found the mass. By June he had started radiation 5 days per week for 6 weeks. That held off the tumour until February 2005 when the MRI showed regrowth.
They tried higher dose of temodal for 5 days per month for two months (375 mg) but that did not stop the tumour progression, so they switched to 100 mg 21 days on, 7 days off. They kept that up for 22 months. Each MRI showed slight progression.
The MRI in November 2007 showed more progression so they stopped the temodal all together. In December 2007 they tried high dose targeted radiation - 5 treatments. That seemed to slow it down.
His next two MRIs were good. Now he is due for another MRI (in June). He has had a grand mal seizure at least once a month since Dec. All with trips to ER because he lost consciousness. They never know what to do because he has been on Dilantin (usually 400mg per day) for the last 5 years (seizures post op, etc.). He is already at the maximum dose, so they take blood - tell me the results and send him home. He is usally wacked out for at least a week.
This time it was worse - he never really recovered his balance and coordination. He is so shaky and seems to be physically declining almost daily. He saw a Neuro yesterday who gave us adavan(?) to stop the seizures so we won't have to go to ER. He told us that his physical symptoms are definitely a sign that the tumour is progressing. He wants to wait until the end of the summer to start decadron, but we may to start sooner. He can't stay awake for more than 2 hours at a time.
It looks like the beginning of the end. I have lived with this black cloud for 6 years and many times just wanted to pretend that it wasn't really happening. We could still go out as a family (4 daughters) and we were happy that we had beat the odds, but it looks like it has caught up to us.
He can't go anywhere - gets too tired. He missed all of the high school graduations and is going to miss my daughter's University graduation this spring because the noise and confusion get too overwhelming for him and he freaks out.