Besides my new status of joining here, after dealing with MBC in my bones for 3 years, I’m PISSED, and ANGRY, and MAD AS FUCK at this disease for just continuing to take bits and pieces of my soul away from me.

In a nutshell, things I LOVED to do and planned have been cancelled, fucked up, lost money, and in the process taking parts of me along.

The latest (which I ABSOLUTELY will be getting my Dr’s opinions) issue is I bought tickets to the IMAX Screening of the Led Zeppelin documentary called Becoming Led Zeppelin for this Friday. While a tad before my time, they were my favorite band ever, but sadly I never saw the group as a whole perform before Bonzo died. This is probably the closest I’d get. It’s limited in IMAX which of course would be the ultimate way to see it. But am I putting my brain through too much by going? LOUD, Lots of lights so on. My Radiology Oncologist before my set up this week, told me (before I remembered this!), my brain is bruised (sent to ER with MASSIVE headache Sunday), and it needs to rest.

HA! So, do I let cancer take this away from me too (I’ll get over it), or do I go and rock out? Kind of.

WWYD?

TIA♥️

Hi all,

I was recently diagnosed with a meningioma tumor measuring 3 x 1.8 cm, pressing against left cerebellum and left occipital lobe. The neurosurgeon has suggested surgery. I’m still struggling to cope with my diagnosis - it feels like my life is in standstill now until the surgery (date TBC).

I’m in my early 30s and currently not working since Q4 2024. I was wondering if I should disclose to future employers about the brain surgery when applying for jobs after I’ve recovered. They’ll ask about the career gap.

I’m worried it will affect my chances of getting a job as employers may have perceived biases and make assumptions about my cognitive abilities since the surgery is on the brain. I know I’m thinking far ahead but I just want to have some template answers ready so I don’t have to think/worry about this post surgery.

For more background info, I’m also quite a high achiever and have been working incorporate for several years now.

Hi, mostly just want to know for myself. I've have been so extremely blessed for 20 years. Surgery 20 yrs ago and 16 years later reoccurrence followed up w RT and chemo. Now on Voranigo for precaution even though the Dr says my scans are good. I have not seen anyone talk about dealing with their cancer 20+ years later. I want to know what life is like for you What your prognosis is Have u had 3rd reoccurrence Please only 20 yr plus patients. Thx yall 💓

(Title mistake I'm getting proton therapy)

I've had a benign brain tumor since 14 but my tumor evolved to an astrocytoma grade 3 tumor.

I'm getting proton therapy for 6 weeks and then will get chemo after 10 weeks what kinda side effects should I be expecting?

I’ve been dealing with Metastatic Breast Cancer after being NEAD from original IIIc diagnosis for 13 years. Mets in bones only for almost 3 years now, until a BAD headache, overnight hospitalization, MRI show innumerable small lesions in brain. One is pressing on a speech nerve making me slur S’s.

Just trying to not go to the darkest of places, but I know this is bad. They have me set up for WHR beginning Wed.

I’ve dealt with cancer for so long, but this brain shit (apologizes if cursing not allowed) scare me.

Any words of hope from anyone is greatly appreciated.

Hi all,

I’m 21F and I think I need a service dog. I’ve recently got my license back for 3 weeks then boom I had a seizure THAT night of my neurosurgeon appointment where I had told him that all my symptoms were being managed and I haven’t had anymore seizures. Since that night I’ve had 2 more seizures and one of them was really scary because I felt no “aura” and I hit my head really hard. I get seizure rescue medication and I’m getting a medical ID bracelet with my emergency contacts but I’ve been feeling dizzy frequently. My neurosurgeon told me that it can’t be my tumor because it hasn’t grown so he just wants to wait and watch which I don’t want to do. Granted, my surgeon is Dr. Manuel Ferreira, the chief of neurosurgery at UW and Fred Hutch so I take his opinion seriously.

My 6 year old golden retriever died in September also from a brain tumor (we were diagnosed the same week in July) and I need a companion but more importantly I need a companion that can alert my family if I have a seizure when no one’s around. The problem is that I can’t afford a $40,000 dog. I’m unemployed, live with my family and I’m in nursing school at Bellevue College in Washington. If anyone lives in the Seattle area, are there organizations or companies that will train epilepsy service dogs? Does anyone have any recourses / foundations I can apply to to get a reduced price/free service dog? I need the help of Reddit.

I’m open to any and all ideas

Anyone had intermittent spine pain during radiation? My husband is half way through radiation and complains of spine pain at night or mostly lying down. Is this something to worry about? All his RO said was to take some painkillers. Any other symptoms we should be monitoring to ensure it doesn’t progress into something more serious?

Does anyone know anyway of accessing Vorasidenib in the UK?

Oncology doctor has said they don’t have access to it, but online it appears some trusts/centres can?

Is it accessible privately? If so does anyone know how much it costs and how to go about getting it?

Cheers

Hi there, To the ones that got radiation necrosis, what it looked like in your MRI. My gf has a micro area with contrast enhancement that very looks like radiation necrosis but who really knows... We are a bit scared. It is very small and the neuro is not worry.

Hi everyone My husband (29) was diagnosed with a grade 4 diffuse midline glioma only this week following needing surgery for intracranial pressure 2 weeks ago Surgeon has said it is inoperable and so we are starting radiotherapy and chemotherapy

I wonder if anyone has had surgery for this type of tumour? Particularly after getting a second opinion?

I (33M) was diagnosed with a grade 3 anaplastic astrocytoma in my insula between frontal and temporal lobes (non-dominant, right side and I'm right handed) in November. 65-70 percent of tumor (about the size of a quarter or very large blueberry) was removed Nov. 18 during a craniotomy, leaving behind several "tentacles."

Initial onset symptom was complete numbness on left side followed by a minor myoclonic seizure (jerky movements on left side of body but no loss of consciousness) that only lasted about 45 seconds.

Two weeks after resection I developed left side peripheral neuropathy. Intermittent initially but it has become nearly constant and almost feels as if it worsens as the day progresses (mornings it's basically non-existent).

After catching MSSA in early December and dehiscence of my surgical incision right after Christmas I went from having a titanium mesh plate put in to it being removed and now I'll be wearing a helmet for about six months because I'm missing the bone flap altogether.

I'm set to begin six weeks of daily chemo (temodar) and 33 straight business days of radiation followed by 12 cycles (months) of five days on chemo 23 days off.

My radiologist said my neuropathy could worsen, stay the same or improve.

I'm looking for anyone who may have experienced something similar and what happened to your neuropathy symptoms.

I had a grade 3 astro removed in 2015. It came back and I just had surgery Friday to remove it. Luckily the surgeon was able to remove 95% of the tumor. I got my pathology results back today and it’s a grade 4. I’m really struggling with this.

Hello, This is my first post in here. Long story short I was diagnosed with an inoperable low grade Oligodendrglioma In the left parietal lobe after a ER visit on 9/1/24. I had a seizure that morning for the first time and my life changed. Since then I have been prescribed Keppra starting at 1000 mg a day and now at 3000 mg a day and just started Vimpat at 200 mg a day. Additionally I take voraingo which is suppposed to target the type of tumor I have and prevent it from growing and give me a buffer before I have to start radiation and chemo. However since my seizures have been increasing in frequency going from every 6 weeks to 5 and then 4 and then 3ish weeks to now 7 days in between the last two. My most recent MRI a few weeks ago showed no tumor growth since sept. All my seizures tend to happen in the evening and while watching tv or playing video games. I am also overweight which I wonder if that could cause me to need more medication. Can a tolerance be built up to keepra? Unfortunately it is going to be several more weeks until I can speak to a neurologist so I figured I’d check in here first Thanks.

Hello everyone. On the 19th of December my wonderful partner (42/m) had a tonic clonic seizure. They thought it was encephalitis as he had a bad viral infection for a week but 2 MRIs later it was confirmed as astrocytoma grade 2. Supposedly he’s had this minimum 5 years by the words of his wonderful NO. Craniotomy is on Wednesday. I am scared shitless. I am barely holding it together. However this subreddit has been first incredibly informative and to be honest I feel a different person reading about all of you strong amazing people on here thriving and living your lives after your initial diagnosis. I will stick around. I wish you all the absolute best.

41M, Stage 3 Recurrent Glioma

Been fighting this stubborn guy since 2014. I've had a few craniotomies and I've done Temodar for about 2 years. This time I'm doing PCV. I'm approaching day 28 of my 42 day cycles. I'm curious, for anyone who was been down this road, how often did you feel like 75% or better? The Vincristine injection whooped me for a couple days, I get those every 3 weeks. But the Procarbazine, that's 2 straight weeks of pills.

I've been done with those for a few days and I get my next injection on Monday. Fortunately I work from home, however I'm on LOA and praising the gods I'm not working right now. I've been with my company 13 years, this isn't a humble brag but I've risen to the top in every role I've had there. I've been honest with my boss and peers that the guy they're used to seeing won't be online until at least Halloween. I guess I'm just wondering how hard this might be to work 120ish hours a month. And, more importantly, I'm very curious what reasonable expectations are.

Had my surgery on Monday, was discharged on Wednesday! Feeling pretty cogent, and it sounds like my doc was able to achieve gross total resection.

Recuperating at home and waiting on pathology. Thanks for everyone’s advice and encouragement when I first posted about a month ago!

Kinda lost here…

I had a CT scan yesterday as my family doctor wanted to rule some things out. I’ve been having cough induced headaches off and on for the last year — coughing, laughing, or getting out of bed quickly would cause these really sharp headaches. We both thought it was related to how tense my neck is. Anyway, the scan revealed a 5.3x4.1x5.3cm mass. Doctor told me to go to the emergency right away so I could escalate it with the on-call neurosurgeon, which I did, and should be getting an MRI within 72 hours.

CT scan revealed that my brain stem is compressed, 4th ventricle is also compressed and shifted, obstructing hydrocephalus, possible large meningioma due to dural base. It also mentions possible necrosis due to areas of low central density.

Based on my quick internet searching, despite it being scary, it doesn’t sound like the worst scenario for a tumour. Oddly enough, my mother was diagnosed with (probably) a different kind of tumour last year. She had two surgeries, the second one leaving her somewhat impaired on her one side, although it is continuously improving, and some minor cognitive issues. I can’t read into that as every tumor and surgery is different.

That being said… just hoping others could provide some context if they’re familiar with what the scan said. I’m kinda distressed as my career is taking off and I’m on the verge of going back to school. Really in the dark, and some context would be amazing.

Hi all, I realize everyone's tumors and brains are different and I will speak to my neuro - but he is unavailable for a while.

I have oglio difuse in my left frontal lobe. 3cm

After surgery were you able to drive and fly?

I go crazy without exercise and the gym. How long did it take for you to be able to workout again?

My mother 55 years old started with temodar 120 mg pills for olig2 grade 3 idh mutant left parietal lobe today and has been puking a lot. She has her radiation session in sometime. What can I do to help her keep her food down or give her for strength. Overthinking and feeling anxious. Any advice pls

Hi everyone. I get awful migraines that are paired with a multitude of symptoms. I got a repeat MRI done and the following was shown…

“There is a T1 hypointense and T2 hyperintense lesion in the right frontal bone measuring up to 1.4 cm in anterior to posterior dimension, stable since MRI of August 2021, probably benign given the stability. Bones and extracranial soft tissues are otherwise unremarkable.”

I’m waiting to hear back from my doctor. Does anyone have any experience with a similar lesion? What does this mean? Do I potentially have cancer?

Scared and would love to know your thoughts!

Can people share their experiences of having one of these please? I have daily headaches and am feeling more tired than usual, guessing this is common although it’s only a small tumour. Only recently diagnosed and yet to see a neurosurgeon.

Just to talk, support one another, let me know if interested ill send ya link

eastern 630-730 pm

hope all is well 🙏🏻

Last night, we hosted a webinar on Using Ultrasound Technology To Open The Blood-Brain Barrier—a promising technique that may help improve drug delivery to brain tumors.

If you missed it, you can watch the recording here:
🎥 Watch Now: https://virtualtrials.org/video2025.cfm?video=202501

While still in the early stages, this approach has the potential to make treatments more effective. Check it out and let us know your thoughts! #BrainTumor #GBM #BloodBrainBarrier #FocusedUltrasound

Hey gang 54M GBM on vimpat. I’ve lasted almost two years (so far!!) and had four pretty brutal breakthrough seizures. Had one today and was reminded that after each, once I’ve calmed down, I feel super happy. I had that after surgery too. Just an adrenaline thing? Anyone else? Love y’all!

https://clinicaltrials.gov/study/NCT06254326?cond=Oligodendroglioma&term=Adagio&rank=1

Just wanted to share in case anyone here is considering a second+ surgery. Found out about this via Oligo Nation.

Hi, 24M here. I've had a cranio last july (Astro Gr2 IDH) and i was wondering if it's time for me to start excersising. I've never been at gym, but now after all this mayhem in my life i've decided to try. What are your thoughts and suggestions about this? What should i do and what i should not? Cheers.

I'm a 38-year-old male with an oligodendroglioma and was trying to be optimistic about new research but I'm watching Youtube videos from 15 years ago talking about trails and possible vaccines, but we still seem to be so far away from greatly extending our lives yet alone finding a cure. What do you guys think? Any thoughts?

Doctor has suggested Temospan 120mg everyday in the morning for about 42 days with radiation 4-5 times a week for about 6 weeks after GTR of oligdendroglioma left parietal lobe grade 3 IDH mutation for my mother 55 years old. She had an excellent recovery after surgery and doesn’t have any co morbidities Any advice or suggestions?

Hello everyone, long time no see! Today on my kinda stupid questions list is- How did you guys handle the first common sickness after your surgery?

I am 4 months post frontal lobe craniotomy, been battling really bad cold since Friday. Honestly, this might be the worst one I had since 2020. Explosive near violent sneezing, endless blowing of my nose, constant cough and ugh the pressure in my face all made me wonder- how does this affect the hole in my brain? Can’t be much more harmful than hitting my head on the car trunk like month post surgery- or at least that is what I keep telling myself. I know they say in the early weeks to not raise head pressure much but I think at this point I should be safe. It’s not like I can stop it regardless haha.