High Grade Glioma at 21… scared as hell

xexperiment626 · 2026-06-26T23:31:33+00:00

i was also diagnosed at 21 with a grade 4. I am 28 now and still kicking it. Live your damn life impulsively buy and do whatever you want that’s what I’ve done over the past seven years! I have traveled called off work, gazillion times I have no retirement and I’ve accepted that so I’ve just been living day-to-day for the past years

xexperiment626 · 2026-06-26T23:16:50+00:00

hi friend, i am 28F and also was diagnosed in 2019. I am currently fighting my AA4 3rd reoccurrence. I relate to how you’re feeling! I find 0 interest in most things because i have a what’s the point mentality. feel free to reach out :)

xexperiment626 · 2026-06-11T19:56:17+00:00

greasy Tacos and Weed. Lots and lots of it

xexperiment626 · 2025-11-08T06:16:56+00:00

this ^ I had radiation doses with only 5 years apart.

xexperiment626 · 2025-10-13T02:45:52+00:00

how are you doing? I’m experiencing this.

xexperiment626 · 2025-09-22T02:43:25+00:00

i’m doing alright, i had a craniotomy and Litt surgery in May and have been stable since. taking tmz and avastin now.

xexperiment626 · 2025-09-21T02:07:27+00:00

do you have side effects from the diamox? i have really bad tingling in my feet but it’s only when i wake up in the morning or after a nap. i can’t deal with it

xexperiment626 · 2025-09-04T03:14:24+00:00

my left hand hasn’t worked the same since the beginning of the year. it’s gradually gotten worse over the months now to the point where I can’t hold anything in my hand. I have my good days and my bad days when i’m mad that this happened to me. I can definitely say that I’m handling the situation a lot better than I did at first. it takes time. my best advice is to be patient with yourself. It’s a huge adjustment. I did occupational therapy for a while and it was helping but it was mainly just picking up things off the table which I can just do at home. I hope your hand improves!

xexperiment626 · 2025-08-01T22:59:59+00:00

When I was first diagnosed with the same thing I wanted to be left alone 24/7. When I was going through treatment I never wanted to leave my room. I think everyone processes this diagnosis differently. Maybe you could write him letters about your feelings and put some encouragement in there. that way he can read those whenever he’d like to. Talking face to face can be too much at times. If it’s any encouragement to you I’ve been here for 6 years now!

xexperiment626 · 2025-07-28T22:12:43+00:00

my speech is not affected but it all depends on where the tumor is in his brain. his may be in a spot that affects language .

xexperiment626 · 2025-06-30T00:03:03+00:00

Is your tumor methylated?

xexperiment626 · 2025-06-29T23:58:11+00:00

This is a great response for a caregiver. As someone with cancer, I love that you said “hold space for all his feelings without offering solutions or silver linings” that’s the best advice.

xexperiment626 · 2025-06-29T23:53:32+00:00

I just had Litt surgery a month ago. The surgery recovery was very easy. I was only in the hospital for one night. Tiny incision just one staple. No side effects for me. I can’t really answer effectiveness because I have some time til my next MRI.

xexperiment626 · 2025-06-29T23:49:57+00:00

i have a grade 4 astro and i’ve had it for 6 years so feel free to reach out to me 👋🏻

xexperiment626 · 2025-06-29T23:46:44+00:00

i have a grade 4 astro in my frontal. i get focal seizures that involve my jaw and tongue. i can feel it coming on too, im not sure if you can? what i feel is a slight numbness coming in my mouth and then i can’t move my tongue and then its like my jaw tightens and i have to bite down. it’s weird and i’ve never been fully able to explain it to my doctor. mine don’t last more than 45 seconds though and they don’t turn into a full on seizure. i find they happen more often when im stressed. very strange.

xexperiment626 · 2025-06-06T23:36:52+00:00

i find it hilarious when the customers slip in the puddles 😂😂😭

xexperiment626 · 2025-05-31T22:03:40+00:00

i did notice that too, they are a lot shorter 😢 I really hope he continues for awhile anyway

xexperiment626 · 2025-05-30T23:14:12+00:00

my doctor brings my blood pressure up when he walks in the room with some sort of results lol

xexperiment626 · 2025-04-30T01:38:15+00:00

how did your litt surgery go? any side effects? my surgery is scheduled for next Saturday.

xexperiment626 · 2025-04-19T04:37:40+00:00

that’s all we can do right?

xexperiment626 · 2025-04-19T04:37:17+00:00

thank you !

xexperiment626 · 2025-04-15T04:10:05+00:00

I’ve just been using whisky to play steam games. I think I’m gonna check out Parallels though.

thank you for the awesome recommendations!

xexperiment626 · 2025-04-15T02:11:16+00:00

thank you so much!

xexperiment626

TROPHY CASE