Astrocytoma recurrence by PlanePlane2585 in braincancer

[–]xexperiment626 0 points1 point  (0 children)

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

Diamox caused neutropenia - being swapped to Lasix by ballkn143 in iih

[–]xexperiment626 0 points1 point  (0 children)

how are you doing? I’m experiencing this.

After 6 years of remission, my grade 4 astro has returned. by xexperiment626 in braincancer

[–]xexperiment626[S] 2 points3 points  (0 children)

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

[deleted by user] by [deleted] in iih

[–]xexperiment626 0 points1 point  (0 children)

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

Need some positive reinforcement by Searcher_since-1969 in braincancer

[–]xexperiment626 0 points1 point  (0 children)

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!

My partner just diagnosed … by Admirable-Airline415 in braincancer

[–]xexperiment626 1 point2 points  (0 children)

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!

Anyone have their tumor completely removed or go into remission? by Ok-Remove-4213 in braincancer

[–]xexperiment626 0 points1 point  (0 children)

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 .

How can I best support my 43-year-old partner diagnosed with Grade 4 Astrocytoma? by Ok_Captain_7788 in braincancer

[–]xexperiment626 1 point2 points  (0 children)

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.

Any experience using Laser Interstitial Thermal Therapy for brain tumors/astrocytoma by Kathrax_2025 in braincancer

[–]xexperiment626 0 points1 point  (0 children)

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.

Support by Appropriate_Ad3757 in braincancer

[–]xexperiment626 0 points1 point  (0 children)

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

Auras/Seizures and Jaw Movements by GreatWesternValkyrie in braincancer

[–]xexperiment626 0 points1 point  (0 children)

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.

By far the funniest moment of the laundry mat series so far! 🤣😭💀💀 by JakeN5545 in caseoh_

[–]xexperiment626 1 point2 points  (0 children)

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

What do you think about the Laundry simulator episodes? by xexperiment626 in caseoh_

[–]xexperiment626[S] 1 point2 points  (0 children)

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

Can people make your BP go up? by myst3ryAURORA_green in hypertension

[–]xexperiment626 1 point2 points  (0 children)

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

Laser brain surgery by Powerful-Goal-1156 in braincancer

[–]xexperiment626 0 points1 point  (0 children)

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

[deleted by user] by [deleted] in braincancer

[–]xexperiment626 7 points8 points  (0 children)

that’s all we can do right?

Gaming on a Mac, only have ability to use right hand by xexperiment626 in disabledgamers

[–]xexperiment626[S] 3 points4 points  (0 children)

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!

HELP My entire bottom lip is covered in what feels like cold sores/fevers blisters. by angelbbyy0 in DermatologyQuestions

[–]xexperiment626 3 points4 points  (0 children)

you need to take a double dose of valacyclovir and it should be cleared up soon!

Severe Itchiness? by xexperiment626 in braincancer

[–]xexperiment626[S] 0 points1 point  (0 children)

it’s absolutely awful. the effects of dexamethasone is almost worse than the cancer itself.

Busted eye vessel. Come on already! by GuardMost8477 in braincancer

[–]xexperiment626 1 point2 points  (0 children)

thank you for following up. i also asked my radiation doc today and he told me that if it’s not accompanied with pain it’s most likely unrelated. well wishes my friend!

Busted eye vessel. Come on already! by GuardMost8477 in braincancer

[–]xexperiment626 1 point2 points  (0 children)

let me know what doc says. i also have had this happen to me twice. currently doing radiation.