I wanted to give an update on my wife's battle with GBM. My wife had fallen on Nov 23 while outdoors with some family members on Thanksgiving. She scraped her chin, but no broken bones. Then she fell again the night of Nov 26 while in her closet undressing. She got some nasty welts on her back and rear hitting a shelf on the way down.

She started cycle 2 of the 5/23 on the evening of Nov 26. On the evening of the 28th she was sitting on the sofa and went into some bizarre behavior. She lost cognitive ability for the most part, although she could answer some questions briefly. She also had a fever of 101.7, tremors in her hands, and was very tired. I decided to skip the temodar dose for that night. I gave her tylenol and she went to bed about 8 pm.

I figured I should run this by the oncologist and got the on call doc. She recommended I take her to ER immediately. When I got her out of bed her temp had gone up to 102.7. It was difficult dressing her as she was still out of it. She also had to pee about every 10 minutes, including on the drive to ER. She had a CT scan and was diagnosed with a brain bleed, which they said was probably from the falls. I was concerned that maybe the temodar was a factor in the bleed, but they said no. They were afraid she would need surgery, but decided to wait 6 hours and take another CT. Fortunately, it showed the bleeding stopped, as did a third CT the next day. A test for UTI was negative and strangely her temp returned to normal shortly after arriving at ER. She spent two nights in the hospital.

When we got home on Nov 30 she began day 3 of the temodar (as authorized) and completed day five Sat night Dec 2. On Sunday she was wiped out tired, and went into and out of cognition a couple times. About 6 pm she again went into the same bizarre behavior as several days prior. This lasted several hours, but she came out of that after about 3 hours. I am very concerned about the bizarre behavior and wonder if that is caused by the temodar, or tumors. If it is the temodar I have to wonder if the risk of that drug out weighs the benefit.

She had 3 CT's in the hospital, but I couldn't get any of the docs to comment on the tumor status. They kept saying they were more concerned with the bleed, and that an MRI would be more informative. This was frustrating to say the least. Any comments from current GBM patients or caregivers on this series of events?
Thanks,
Dan