Looking for Others with Brain Tumors

@terrancedalecasino
I had an astrocytoma grade I back when I was only (11) years old in 1970. It was removed and thank GOD it was BENIGN. I also had a
PNEUMOENCEPHLOGRAM VENTRICULARGRAM ANGIOGRAM AND RIGHT SIDE POSTERIOR TEMPORAL PARIETAL OCCIPITAL LOBE CRANIOTOMY. However, I did develop PETIT MAL TEMPRE LOBE PSYCHOMOTOR COMPLEX PARTIAL SEIZURES for the rest of my life up until 1978
when I went to Mayo Clinic and had an E.M.I. scan done. Also known as CAT scan.
COMPUTERIZED AXIAL TOMOGRAPHY SCAN.
My last seizure was around October 2013.
But thanks to the neurologist at Mayo my seizures went from having (6-8) a week to maybe (1) a month and then (0).
I hope this was helpful to you.
Good Luck 🤞 and GOD bless you and your family and friends and colleagues and may he watch over you and protect you always.

I forgot to tell you.
I just celebrated my (66th) 28december24.

I have recently been diagnosed with a frontal brain tumor and an aneurysm on left midline. I was diagnosed in March of this year. I went to a second opinion Dr and decided to go with him. He has also referred me to a radiologist for an angiogram before I would have surgery. I’m scheduled to have that on October 27. I have to say I am scared to death. Can anyone tell me what to expect? Best, Elizabeth

Glioblastoma grade 4. Diagnosed 1/23/2026. Had surgery, radiation + chemo. Completing 6th cycle of chemo 5 days on 23 days off.

That’s wonderful for you. I pray you continue to heal. My sister just past sept 6 from glioblastoma. She was diagnosed august 30 and past 7 days later. Had she been able to get the mri sooner maybe she could have survived.

My sister is struggling right now she was diagnosed in April and didn’t get surgery for at least a month and had already lost the use of her right leg because of the site of the tumor. Yes it is glioblatoma. She did the 5 wks of chemotherapy and radiation and just did her first round of the 5 days and she was just like a zombie. She has seizures in that leg and is on medication for that but the new thing that has come about is the extreme outburst of anger. She has thrown things and gotten a light bulb out of her bedside lamp and wanted to cut herself. She was in a nursing home. They just weren’t able to safely care for her at home. So as of two days ago they admitted her from the nursing home to the hospital for IV sedation. She also has soft restraints on her wrist . Horrible situation and they can’t figure her out. This is not like her at all. I’m just wondering if other patients have these outbursts. The MRI didn’t show the tumor back but some fluid. Prayers please and oh if you saw my first post weeks ago about her not having any faith she did allow the priest that baptized her two kids as babies (long time ago) to do the blessings of the sick. Surprised all of us but doesn’t want him coming back. 🙏 thoughts.

My husband was diagnosed in late March after no symptoms but a sudden seizure, with the worst type, grade 3 Gliblastoma on the left side of his brain. He had to be sedated and both arms and legs restrained until he finally came out of it. After he became himself again, the surgeon agreed to do surgery while he was awake. However he was never the same after surgery. 18 days later he again woke up non verbal and had a stroke. Back to the hospital with restraints and sedation. His MRI also showed fluid but never recovered and passed after 10 days. He was scheduled for 5 weeks of daily radiation and chemo but never made it to either. I am SO sorry .

@cherij52 sorry for your loss.

Thankyou. She was my other half. It’s going to be awhile. My blessing for you.

I’m so sorry for your loss. This glioblastomas do not care. So update they have weaned my sister from some of the steroids and feel like it was what they call a steroid rage. She still doesn’t have any mobility per se and doesn’t want to go back the nursing facility where she was because they literally just let her lay in bed all day waiting for her to pass. She is set to do another round of chemo her second of the 5 days in and so many off. But that last round just about did her in but it is her choice. Honestly I did t know which way to pray since I realize it is terminal I just what her not to have to struggle so much. 🙏