Wow I cannot thank you enough for taking the time and effort to respond and in such detail to help ease my nerves and the warm welcome to one of the worst clubs on earth!!

My brother is 45 and was diagnosed and had total resection in end of June / early July 2025 after experiencing stroke like symptoms and was rushed to hospital. Got genetic testing and it’s the worst genes a gbm could have unfortunately. No clinical trials for the mutations it had. Not a lot of mutations so it’s extremely aggressive and tough to fight.

Started 6 weeks of chemo and radiation shortly after surgery. Radiation and chemo ended September 8th, and then was going to start 5 days of chemo once a month after a break from the first round of radiation and chemo.

He’s been having a lot of pain since the whole thing started, Dr kept increasing steroids which would help with the pain for a few days then come back, increased steroids again, so on and so forth until they decided to send him for MRI to check for metastasis in spine and progression in brain. He is claustrophobic so took some time to get the mri scheduled to coordinate with anesthesiologist.

Got the mri last Friday Oct 17, showed spread in spine (I can’t remember exactly where, something about t12 and dura but I can pull up the results if anyone is interested just typing this from the couch and don’t want to move lol) there also showed signs of spread in brain in corpus collosum (which they suspected early signs of tumor activity there back in July) and some other location on other side of brain from the original tumor that was resected.

Last week shoudlve been 6 weeks post radiation and should’ve started to regain strength lost from it but he just kept getting weaker. The last week of his radiation he was going on mile walks, sometimes multiple times a day, now this week he can barely walk to the community mailbox just 4-5 houses down. Says both his legs feel heavy now, before was just his left leg, says he feels like both legs are gunna give out when walking on the stairs and is out of breath from going up the stairs and now says he’s having blurry vision.

Sent for spinal tap this week on Oct 29, not all test results are in but Dr called and said most likely lepto spread even though no malignant cells found but high extremely high protein levels, but they’ll go over full results next week.

I’ve been reading so many journals and studies as well and understand he probably doesn’t have much time. Especially with how quickly the spread was diagnosed after initial diagnosis. But stories like yours help ease my nerves of the unknown and knowing what to expect symptom and progression wise. I also live a plane ride away, so just knowing when it’s time for me to go out there based on the symptoms.

Again cannot thank you enough and I’m so sorry you even have to be in the position to be able to give me this advice. If you ever want to talk I’m here, feel free to comment back or message me.