My Husband's journey with Glioblastoma

This result sounds encouraging. May I ask when were you first diagnosed with GBM, and did you have surgery for tumor removal? Was the surgery deemed successful? Finally, when did you complete the SOC? What were your reasons for quitting SOC? I am trying to evaluate your situation for correlation to my wife's GBM.
Thanks,

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

Hi everyone, my husband just had a surgery of GBM. We are waiting for the pathology, but it doesn’t look good. I’m overwhelmed by this I have 3 kids and my husband was the only household income. I’m happy that I found you guys here, and can talk to you. I live in Orange County California. Do you guys know what is our next step. Should I look for clinical trials around us. Obviously I can’t travel with 3 kids. I’m lost and heartbroken.

Judging by your post you must be younger with 3 kids. In that case you should inquire to your doctor and go on line about clinical trials. Your husband may be a candidate for something promising. In my wife's case she was not eligible for any clinical trials because of her age. Hopefully they were able to get most of the cancer out which will increase his chances. Our prayers are with you and your family. Please keep us posted on the progress.
Dan

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

My husband is 54. He had 3 tumors. 2 in frontal lobe and a small one in his left side that they didn’t touch because it was in critical location. We have to go back in two weeks to find about the pathology but based on the spread of the tumor the doctor is not hopeful

@manty54, I'm glad you found us too. You must feel very alone. The waiting is so hard. How are you doing?

@djw, what an ordeal. This must've been scary for you. The bizarre behavior you describe could be an number of things, like the tumor, a urinary tract infection, the fall, other...? Has she had the MRI in the meantime? Do you have any answers?