Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from glioblastoma multiforme, or know someone who is, join this support group.

Mom was diagnosed May2018 and everything just seems to be more difficult.

Deleon51390
Posted by

Hello everyone my mother is now on her 10th month after she had surgery to remove GBM. Surgery was a success and the Neurosurgeon said he was able to remove as much as possible, she waited about a month to start chemo since the inside of her brain was still swollen, but everything went back to normal. My mom didn't want to stop working since she was determined that everything was fine. She has been doing everything from Chemo to MRIs every month, she did declined this hat form type of radiotherapy that she was approved for because she refused to shave her hair off and ever since the surgery she has been slowly getting more bipolar and continues to bring up bad memories from the past, repeats her self a lot and forgets easily. My mom didn't have a good child hood and most of the time she found her self struggling so it's hard for all of us to watch her suffer even more now. We have been trying to help and give as much advise as we can but my mother can be stubborn in many ways so she makes everything very difficult for us. And just today she when to her follow up appointment with the Oncologist just to find out that there is something different on the results from the last time and that it seems like the inside of the area where the tumor was removed originally is getting swollen. Has anybody experienced about the same from us and is the mental state of a GBM patient always like that? and does it mean that the tumor is progressing?. Any advice is highly appreciated

Thank you.

lthenderson
Posted by

At least on this side of the pond, there is a term often referred to as "chemo brain". Chemotherapy, in order to do a good job, often affects living cells and this can affect everything from moods, to speech, to many other things. In my mother, it affected her decision making process. It would start up within a few days after she took her oral chemo and last a week to a week and a half before slowly getting better as the month wore on. We learned to just monitor her closely after taking the chemo but we did always inform her oncologist just to make sure these things were normal.

Hopefully this is your case.

Best wishes

sk1359116
Posted by

Hey Deleon,

If you're anything like me, these personality changes are driving you up the wall. My mom is the same way after her chemo, and especially right now because the doctor lowered her steroid dose. I think this is causing more swelling in the brain, which in addition to the chemo, makes her less intelligent and more disagreeable. It's highly frustrating and I have a hard time not losing my temper on her, and this is mostly because she often "played dumb" with me over the years regarding how she was treating me or behaving, so it's a big trigger for me. Our doctor has tried to prescribe Provigil/modafinil, but the insurance company denied it (apparently they deny it for everyone). 

I'm in the same boat wondering exactly what the tumor site and activity there has to do with her personality. Can't wait for the MRI next month. Just know that someone else is somewhere in the world going through almost exactly what you're going through, and I'm thinking of you and hoping it gets better for you!

Aliciazoe
Posted by

My mum is no longer here 

but she had swelling At the surgery site. Due to the increase and decrease constantly of steroids. 

GBM came back within a couple of months unfortunately. 

My mums personality changed, she became rather nasty and extremely confused  at times. 

I took it with a pinch of salt. I knew it wasn’t mum. I knew it was the cancer, steroids and other meds that she was on that was frustrating her. I can only imagine what was going on in her head. 

Make the most of the time you have when your loved one is acting themselves. 

My dad shouted at my mum rather badly one day, because of mums utter confusion and we had a huge row about his care for her as I felt incredibly bad for my mum as she had no mobility. 

and now she is no longer here, he regrets the day he shouted at her and thinks about things he could have changed. 

It’s hard but I advise holding your tongue when this is going on. 

Good luck