r/braincancer

Hi,

a close family member has a grade 3 tumor located in the thalamus near the brain stem. he had surgery to remove what the could early last year, followed by radiation and TMZ. Tumor progression noted last summer, and was put on Lomustine. Lomustine resulted in some reduction initially, but has been stable the past few months. he is getting to the end of the max Lomustine cycles. I need to start considering next steps, but not sure where to start researching. where would you start? another surgery? Is more radiation possible? other chemo options? I’m not sure where to look. Parient can travel. Where are the best surgeons? MD Anderson? Thanks for your help, I want to be prepared with questions at the next appt.

Hey hey, I hope this kind of post is okay.

Today I learned I may have Vestibular Schwannoma and this is my first encounter ever with tumors or anything like that. To say the least, Im scared as hell.

Does anyone have any experiences they would like to share about this type of tumor? I feel like hearing from other people with this condition, may give me some comfort or at least make me feel less alone.

I am not asking to be diagnosed, I know thats impossible haha. Just feel free to share and talk about it. I would love to hear about how yall handled it. Especially thinking back before getting your certain diagnosis. Any tips on how to push through the fear and uncertainty as I wait for my MRI scan? (Which is gonna be in 3 months 🥲)

Thank you so much for reading and I wish you all well 🫂

My wife is starting Vora tomorrow for her Astrocytoma grade 2. Remaining tumor after resection is in the insula. Would love some tips to pass along to her for expectations getting started on the med. She’s 35 and in great health otherwise.

Her pathology showed very rare mitoses and overall super slow growth, despite her original tumor being very large. I’m nervous that she isn’t being put on watch and wait and that Vora will somehow speed things up.

Our daughter is 18 months old and was diagnosed with DMG with an EGFR mutation.

We are trying to understand whether targeting EGFR in combination with ONC201 could help restore or improve its effectiveness (as EGFR may contribute to resistance to ONC201).

Does anyone have experience using EGFR inhibitors together with ONC201? Which EGFR inhibitors have been used?

We are also wondering whether ONC206 shows similar resistance mechanisms related to EGFR, or if it may behave differently in this context.

If anyone is able or willing to share insights on this, it would mean a great deal to us. Thank you very much in advance.

I’m moving to stl soon, so I need to find all new drs there! Does anyone know a good neurosurgeon and oncologist?

Hello!

I just got the final results from my brain biopsy and have an official diagnosis: Grade 2 IDH-mutant Astrocytoma.

My disease presentation is multifocal with 2 separate tumors - one in the bilateral frontal lobe and one in the right parietal lobe. I am not currently a candidate for resection of either tumor. We know my tumors are actively growing (8 months ago my MRI showed 2 lesions but they thought it might be demyelination - 2nd MRI 2 months ago showed growth and that it was likely tumor activity).

I met with the radiation oncologist and the neuro oncologist today and they have given me two options

1. vorasidenib initially, and if there is continued growth or when it becomes ineffective, do the standard 6 week TMZ/radiation combo with 12 cycles of TMZ after (5 days on 23 day off)

or

2. The TMZ/radiation combo followed by 12 rounds of TMZ initially, followed by vorasidenib in the event that I have a recurrence.

I am torn. I am only 27, but I’m not otherwise healthy. I have hEDS and a slew of other health issues including an autoimmune disease, which put me at a higher risk of not tolerating chemo/radiation well. On the other hand, sometimes chemo/radiation can give you years without recurrence (according to my doctor). There isn’t much long term data about vorasidenib which kind of scares me, but the data we have does look promising. I also worry that if my tumors continue to grow while on vorasidenib that I could end up with more deficits after radiation. At the same time, the younger I am the longer I potentially would have to live with the side effects of radiation and any long term issues it causes, so it might be better to wait on radiation as long as possible.

My team says there isn’t any evidence that doing one approach before the other is better or worse for overall survival or outcomes. I think the easier thing to do would be start with vorasidenib and then do chemo/radiation after if needed, but at the same time my tumors are quite large and very close to, if not in, very important regions of the brain, and I don’t want the tumor to infiltrate any more than it already has. I also just want the tumors gone, but my team said even with chemo and radiation it won’t be completely gone, and we might not even see much shrinkage, it might just stop growing.

Does anyone have any thoughts/opinions about what you might do in my situation? Thanks!

Nov 2024.

My mom had a seizure. We rushed her to the hospital. We were told there was some 'mass' in her brain. Post MRI, we were told it is a tumor.

Our world was shattered. We proceeded with the surgery and we were told post biopsy that it was malignant.

Grade 3 astrocytoma - IDH wildtype.

Meaning it wasn't brain tumor anymore. It was cancer.

We went on with radiotherapy and chemotherapy. She began to recover. Initial scans didnt show any improvement.

Dec 2025.

Scans showed a reduction in the size of the tumor. We were happy. Like really happy. But it didnt last long. She started to have mild seizures 3 months later and we learnt that the tumor size had doubled out of nowhere.

Surgery was the only option. Risky, but the only option.

The doctor said even if the surgery is successful, it could buy her 6 more months. And if there is even a small error, she could be paralyzed or lose her speech.

My mother herself doesn't want the surgery.

We've been having relatives come over, cry and leave. I see my Dad losing sleep everyday. I see my mother crying out of headache sometimes and I feel helpless.

She vomits everyday. Has focal seizures almost everyday. Sometimes the medicines mess with her head and she says some really bad things to us and my Dad.

I know she doesn't mean it, but the look on my Dad's face when he sees his wife saying things she wouldn't even think of before breaks me.

Why is life so unfair ?

My Mom is the purest soul I know. Never wished ill on anyone. Always been helpful to everyone. Avoided unnecessary fights. She sacrificed her career for me and my brother, and now this.

I haven't been able to process this. I never imagined I'd have to live without my mother. I mean, I knew there will come a time, but not so soon. There is no single person in this world that I love more than my mother. Ever since I was a kid, she was the one I'd always go to.

I haven't shed a lot of tears. Because I haven't been able to process this.

Can anyone tell me how to deal with this ?

I’ve had a tumour for over a year now and haven’t had surgery yet. I’m expecting a date very soon. I need to just put my thoughts somewhere since I don’t want to tell anyone around me how I feel. I’ve changed hospitals and last week was the first time I saw my new neurosurgeon.

All this time for the last year I’d been focusing on having an astrocytoma 2 (referred to at several previous appts) which made me feel slightly better but was told by my new doctor last week there’s a good probability the tumour is actually mixed 2/3 (impression from latest MRI) so there’s some high grade.

Just hearing that was enough to make me burst into tears during the consult. I couldn’t ask questions for the rest of the appt as I couldn’t think properly. I know that having a grade 2 doesn’t mean you’re safe from recurrence but I don’t know, it was used as one of my crutches to help me stay positive.

This morning I got another doctor’s impression of my recent scans and they said the same mixed 2/3. It just sucks. I may need 2 surgeries depending on how the first one goes.

So yeah I just feel a little bit down but never giving up and not hopeless. I do believe in God so I put my burdens on Him and I’m practising not to worry about the future.

Has anyone had or do you have an astrocystoma that is affecting your eye sight? I’m on the fence whether to do the surgery and risk my left eyesight being taken away and want to know which option to take whether to do surgery or just chemo and radiation?

Hey all,

looks like in a month i will be having my Hemangioblastoma removed. i made a post a few days ago discussing the symptoms and my misgivings, but the TL;DR is it is symptomatic, but doesnt fully express like normal hemangioblastomas. nausea, ataxia, and vertigo, but no headaches, and sypmtoms are very positional, with rapid onset of symptoms.

regardless, the topic of this post is - im fucking terrified of brain surgery. my main fear is that it wont improve my symptoms, or it will make them worse.

the first 2 months after they found the tumor, only a few people believed it was causing the symptoms, due to them being abnormal in presentation. eventually it seems people began to believe it was, but it does not fill me with confidence that the removal will cure them.

not really sure what to expect from the surgery, though still waiting on a pre-op visit with my surgeon.

My dad is about to have his first MRI after completing concurrent radiation and chemotherapy, and I’m feeling a lot of scan anxiety. His tumor was only partially resected (mostly biopsy tissue was taken), and it’s IDH-wildtype, MGMT methylated, with multiple lesions in the right hemisphere.

Right now, he’s dealing with left-side weakness/immobility, vision issues, memory problems, and some agitation. He’s currently on levetiracetam, dexamethasone, lacosamide, acetazolamide, and co-trimoxazole.

I’m hoping someone can help me understand what to expect from this first post-treatment scan—what kinds of results are common, what might be reassuring vs concerning, and how you coped with the waiting and uncertainty. My heart has been racing constantly and I’m finding it really hard to focus on anything.

Any insights or shared experiences would mean a lot. Thank you for your time!

i cant use either on my left side for the past 2 weeks. its been making life so much harder for me

My cousin was recently diagnosed with DIPG and hopes to qualify for CAR-T, especially in Seattle. He is almost done with radiation. Does anyone know what kind of “washout” periods are required before starting CAR-T therapies for DIPG? Is there a washout period for ONC201? CBD and CBG? Steroids? Avastin? Other supplements? Etc.. are the washouts before cell collection or just before infusions? Thanks for all your help.

Do you know of any platform that is more specific for cancer patients? I can’t find a platform that is also closely connected to clinical care and caregivers, with divisions by cancer type, country, etc.

Has anyone been diagnosed with ADHD or other behavioral issues post diagnosis/surgery/radiation that they don’t think they had before?

I had a craniotomy in Oct 2020 to remove a grade 3 tumour which ended up being around half of my left frontal lobe. I’d always been focussed, organised, and generally pretty easy going. Since I began noticing symptoms (headaches due to intracranial pressure, partial seizures) I can’t sit still, my emotional regulation is shot to shit, I have difficulty concentrating and sticking to tasks, and I’m messy with crap all over the place. I ask because I’m wondering if I’d benefit from some sort of medication, I hate living like this!

Hi,

My younger brother (27 years old) suffered a brain hemorrhage in December 2025. In early March this year, we were told that the hemorrhage was caused by a brain tumor located in the left frontal lobe.

He had surgery four weeks ago, and the surgeons were able to remove what they believe is the entire tumor. Last Thursday, we received the pathology results, and it turned out to be a Pleomorphic Xanthoastrocytoma (PXA), grade 3.

These past few months have been the hardest our family has ever gone through. My brother is incredibly strong, but of course he’s worried about what this diagnosis means for his future. He is scheduled to begin radiation therapy next week.

I’m reaching out here in the hope of connecting with anyone who has experience with this type of tumor—either personally or through a loved one. I understand that PXA is very rare, which makes it difficult to find others who truly understand what he’s going through.

As his big sister, I love and admire him more than anything, and all I want is for him to be okay. I know it would mean a lot to him to talk to someone who has been in a similar situation or who truly understands.

For additional context, his tumor also has a TERT promoter mutation and is MGMT unmethylated. If you or someone you know has had a similar profile, it would mean so much to hear from you.

Thank you for reading ❤️

It’s not even new information. I know I was told once that I had a seizure when I was coming out of anesthesia from my craniotomy almost five years ago. I was in a critical state for more than 24 hours and there’s a note from *two* days after surgery started that they were decision making with my parents.

I can appreciate how stable I am five years later, and I don’t miss my time in the hospital. I just can’t wrap my head around how close of a call that was.

Had a brain Tumour removed 6 years ago. Just finished 6 weeks of chemo and radiotherapy and feel the worst I've ever felt. The treatment is brutal on the body. I've been taking all the meds and they have helped. Been self medication with full spectrum oil thats has helped with a lot of the side effects. I wouldn't want to wish this on my worst enemy. I have an amazing supportive partner who I couldn't of got through this otherwise and everyone in oncology is so kind and caring. I just feel a bit lost now. Have 4 weeks off before going back on Chemo in 3 weeks.

Her journey was incredibly exhausting, from the tumor removal to normal treatments like radiation.

And Ttalking to her has become exhausting because sometimes she doesn't understand what we're saying. It's as if her brain receives different messages and she responds to them.

For example, when she asked my brother a question, he gave her the answer, but her brain didn't accept it(It seems as though her brain did not receive or hear the answer.). She repeated the same question, and my brother repeated the same answer, even raising his voice to try and convince her. She needs to receive an answer in a different way, or for someone else to answer her.

My father asked her, annoyed, why she had washed his clothes, even though he had repeatedly told her not to, but she didn't understand and gave him a different answer.

I was wondering: If she recovers from brain cancer, will her cognitive function improve?