My son is in the process right now, he is 19.. he just had some part of his tumor removed, they couldn't take out the whole thing due to location.. he had his first seizure and thats the time we found out on his mri that there is a tumor.. surgery June 03, we are in post surgical stage right now.. had another seizure June 21.. Mri shows swelling around the resection site.. its a roller coaster of emotions and process.. i just wanna get this done as soon as possible, the seizure in between are traumatic.. now the doctor wants another brain surgery for biopsy due to the first surgery failed to identify the specimen or lesion but my son refusing it.. what are our other options besides brain biopsy to identify what kind of tumor it is..

Hi all,

I was diagnosed with a grade 2 astrocytoma in October 2023 located in my right frontal lobe. The neurosurgeon shared to me he "almost" achieved a gross total resection. I remember the tumor was IDH1 Negative(Non Mutant). Now in my last MRI it was found it is coming back in the same location. I haven't gone through chemotherapy or radiotherapy yet. Most likely another surgery and additional treatment are coming. What is my prognosis? I am scared and worried after my last research on wildtype tumors, I thought I could forget about this nightmare but looks like I am not even gonna survive for as long as I thought. I am 29.

I have an MRI tomorrow, and I am unusually anxious. Since 2018, I have had 4 tumors, 3 craniotomies, and a ton of tmz + radiation. My brain looks like Swiss cheese. I haven't had a seizure in almost 5 years. All my scans have been clean since late 2022. However, I have been having frequent migraines for the last 4 months, and now my hair is starting to fall out. I have a feeling they're going to find new tumor growth, or my hormones are way off.

For giggles: I named my first brain tumor Pinky because of the kid's cartoon Pinky & The Brain. To continue the theme, my next three tumors were Blinky, Inky, and Clyde (Pac Man ghosts)

I live on a completely different continent to the rest of my family. Have done for almost half my life now. But now my mom has brain cancer/GBM and I feel so goddamn helpless. I was able to drop everything and fly to Indonesia when the initial diagnosis happened, but now that they're in the States the time difference and the 15 hour flight from Sydney and the World Cup fucking up air travel prices are really killing me.

I feel like most people would expect me to be distant from my family, but honestly I'm in touch with my parents more than some of my friends with local family are. We are extremely close, despite the geographical distance. And not being able to be there to provide practical support fucking hurts.

I can't exactly drop the life I've built here over the last 21 years and quit my job and rush to her bedside. I feel like such a bad kid even though I'm doing everything I can.

This is shit and I hate it.

Has anyone else been in a situation like this?

I made this server after getting fed up with losing my artistic skill set and not knowing where to turn. Paired with the vaugness of not having a concrete identity to fall back on. I made a more accessible means of connection for myself and anyone in similar positions.

Support groups for young adults with cancer focus heavily on things I can't really do anymore (horseback riding, hiking, etc) to get your mind off of cancer. The older ones account for the constraints of mobility but at the cost of being surrounded by well meaning but out of touch people quadruple your age.

If you’re disabled and still want to offer something creative despite it.

Tdlr: disabily discord server for typing based artistic interactions.

I (31f) don’t think my life has a point anyways. I’m in an abusive marriage where I constantly get cheated on. No one has ever picked me first in life. I was in foster care so I have no family and no one I can say ever truly loved me. I have an 8 year old I love very much so I’m going to “watch and wait” as long as I can and then go on hospice. My tumor is 1.9cm all the way around and they said it’s slow growing. I’m to scared to do surgery or biopsy and I hate the mri machine because I’m claustrophobic. I’m just going to enjoy the time I’m given with my daughter and that’s it. No point in fighting when there’s nothing on the other end anyways.

Has anyone had, or is currently having Proton Beam Therapy, instead of normal radiotherapy (also called, photons or x-rays) ?

I was very recently told that proton beam could be bad for oligodendrogliomas.

Hi all. I’ve posted before. To recap, I moved back to my home state at the end of Nov 2025 and away from my husband & kitty to care for my elderly parents & brother who has brain cancer. My brother has always lived with my parents due to another disability & was caring for them the best he could. His tumor was asymptomatic up until last year then he started falling and having seizures. He has either been in the hospital or the nursing home since the end of November. During my time here, I sold my parents house. They lived there for 60 years & it was falling apart and moved us all into a rental. I’m trying to also take care of their financial situation as mom has mild dementia and many bills were unpaid. My dad was put on hospice during this time and he sadly passed last month. Mom also has Parkinsonism and is on palliative care. I have had all safety bars and tools installed in the house. My husband came out at the end of April. He came out once for a visit before this & it was a disaster and he was horrible but he since has gone to a doctor and got on meds for his mental health so thankfully things are much better between us. Anyway, the hubby took a LOA from work for the past almost 3 months to help me. We attempted to get my brother out of the nursing home but he was only home for 1 week. He had 8 falls during his time here. He was incontinent and needs help with all ADLs. He ended up getting a UTI & was admitted and then sent back to the nursing home. He’s now on the long term care side as he wasn’t making any significant improvement with PT/OT. The nursing home isn’t fancy but it’s clean and the staff is amazing and they really seem to care for him. It’s also on the water and in a nice location. He has a wonderful older man as his roommate who is so kind and a minister. Currently we are awaiting approval for his Medicaid LTSS & my initial plan was to try and bring him home again with an in-home health aid. I am starting to think this isn’t the best idea. My husband has to go back to our home in Utah next week. He’s returning to work and while he is open to moving back to my home state, that will take some time as we have a home there & he needs to figure out his job situation. I’m living with my mom who does need help with bathing, meal prep, shopping, medications, cooking, & cleaning. I also work remotely as a nurse practitioner and while it’s only part-time, it’s a busy job. I can’t leave mom alone for long given her dementia. Oh she almost set the house on fire a few weeks ago! I’ve let my own health fall by the wayside over the last 7 months. I’ve been so consumed with caring for my dad who needed all my attention that I am not exercising or eating healthy. I have been sick for over a month due to my asthma and now have to have a hip MRI due to a new horrible pain (probably from having to lift both parents off the floor as they fall often and my brother in and out of the wheelchair). My brother has left sided weakness, incontinence, big fall risk, and worsening cognitive impairment. He also has lost a significant amount of weight which is affecting his ability to start a new treatment & has a new chronic pancreatitis diagnosis. I think I need to keep him in the nursing home, which sucks. He’s only 54. But I can’t keep doing all this and I hate to say this, I don’t want to. My mom is easy enough but still, I can barely get out to see friends and that will be worse once my husband leaves. I also feel my brother is safer being under 24 hour care being in a facility that truly seems to care for him. I feel like a terrible sister that I’m changing my mind about bringing him home but he also lacks insight into his illness and thinks he can walk and will get up and then fall. I guess I’m just looking for advice on how to navigate telling him and my mom that he has to stay at the nursing home. Thanks all for reading all this. This group has been such a help.

I just need to vent - how effing stupid is it that my love will die before he's eligible for medicare? I want out.

Hi everyone. I’m a grade 3 Astro idh mutant diagnosed in May of this year. 28 y/o female. I made a post a while ago asking about group chats or servers, to stay connected with others. But I didn’t get much of a response, which makes me think maybe we have a need for that?

Let me know if that’s something you might be interested in! If there’s a need I’ll make one myself, potentially open to having a couple moderators run it with me.

Bonus points if you have any ideas for a good server name lol!

Comment if you’re interested ❤️

I had an awake craniotomy June 2nd, but I still only have the initial microscopic result and my MGMT methylated results. This is the microscopic result:

- IDH1 p.R132H (D2): Positive

- ATRX (D2): Mosaic

- p53 Semi-quantitative (D2): Positive in rare cells, favor null

- Ki67 Semi-quantitative (D2): 3-5%

The current diagnosis is favored to be a Grade 2 Diffuse Astrocytoma, and they believe they were able to perform a gross total resection (based on the post-operative MRI). Because the ATRX was mosaic, they can't definitively say it's an Astrocytoma yet, but they believe it is.

For the MGMT, the reported values consists of:

1. A methylation index, ranging from 0 to 17 that reflects the number of methylated CpG sites.
2. A methylated fraction, ranging from > 0 to 1, that provides an estimation of methylation in the analyzed specimen (reported only for positive specimens).
3. An overall methylation score ranging from > 0 to 17 that combines the methylation index and the methylation fraction (reported only for positive specimens).

My result is:

Value: Postive
Methylation Fraction: 0.986
Methylation Score: 13.81

Interpretation:
CpG methylation was detected in the MGMT promoter region.
This result indicates the presence of CpG methylation at the queried CpG sites in the promoter region of the MGMT gene in DNA isolated from tumor-enriched tissue of this individual’s paraffin section.

This is all I have so far, and it's about to be a month. Is this typical for detailed pathology reports? I am still waiting to know the results for: TP53, CDKN2A/B, ATRX (definitive results), and any other mutations.

I have been having to practice patience (and sometimes compartmentalization) as I wait for the results, but because my prognosis and treatment plan hinges on it, it's getting tougher day by day.

Had a seizure out of nowhere a few months back. Turned out to be a tumour in my left frontal lobe. The first scan lit up so much with contrast that they actually thought it was lymphoma at first. Biopsy, then surgery, to get the real answer.

Came back as an IDH mutant astrocytoma, grade 2. Resection was complete and the first post op scan looked clean.

Here’s the part that messes with my head. I had a brain scan years ago for something unrelated, and it’s since been confirmed the tumour was already visible back then and got missed. Still trying to make peace with that one.

Mostly hoping to hear from people like me. IDH mutant, grade 2, resected, anyone on vorasidenib or further along. How are you doing?

I had a craniotomy June 4
Discharged from hospital 2 days later

Today and yesterday I have had a bad migraine. I am prescribed Naratriptan and Tizanidine for migraines since before I knew I had a tumor and usually they do something but not now.

I am also very nauseous and Zofran I am prescribed for that isn’t working.

Pathology report said my tumor was grade 3 astrocytoma but I don’t see a neuro-oncologist until July 15.

My head and eyes hurt so bad right now.
How do I know if this is a normal migraine I just have to tough out,
or if I need to go to the doctor?

Thanks

Hey guys,
Today I had pathology results back for a tumour in my right frontal lobe. It came back as a grade 2 astrocytoma although one of the doctors thinks it’s a grade 3.
I do however have another tumour in the other side of my brain which my neuro surgeon is pretty confident is an oligodendroglioma. He said it’s very rare to see 2 different types of cancer in the same brain but I’m wondering how rare it actually is? Has anyone else been through this?

Like a huge win.
After ten years, 2 brain surgeries, parenting on hard mode, my tumor is stable and retreating.
I was diagnosed when my daughter was starting kindergarten. This year she started Freshman year of high school and over winter break I started Vorasidenib. We were at the point where we needed to do something. I was honestly scared to start but then they brought in who I now refer to as Dr. Mommy 😂 (never to her face) and she explained it to me in a way that made sense and had me actually excited to start. I think she works with the Vora patients but I just adore her, she’s the most compassionate and helpful person I’ve ever met in a medical setting.

My last two scans showed that it had stopped growing and they could show me and say for sure that it is slowly shrinking on the second scan I had on Friday. A bit more definition in my lil brain wrinkles and the space between the wrinkles around my tumor is much more spacious.

Dr. Mommy couldn’t hold back her excitement, she was thrilled to show me my results and followed me chatting all the way to check out and then she gave me the best hug.

My initial diagnosing surgeon said a lot of things. He warned my husband that it would be hard on our marriage, he was wrong, it’s brought us closer. He said I was addicted to exercise when I asked him when I could start running again, he was wrong, I have a really great relationship with exercise and play. He told me to avoid animal protein and I lost way too much weight which he chastised me about as well. He said a lot of things that turned out to be not right or true for me. But he also said to hold out 10 years, a new targeted treatment would come out. I didn’t believe him really but here we are.

A day short of a decade with brain cancer, and I’ve never felt so lucky in my life. I’m probably going to get to see more Springs, my daughter finish high school. I’m also switching AEDs from clobazam to lamictal and feeling so much more motivation and clarity even while I’m waiting to start tapering off clobazam, excited to see how I feel when I’m not sedated by a benzo all the time.

I am not wanting to count my chickens before they hatch- by my doctor told me to go get a pap smear and a lipid panel because we need to be sure I’m going to be around for awhile now that my brain is stable.

I had a total resection surgery of a 6cm meningioma in June last year. It was located in right posterior fossa, mostly affecting cerebellum: lots of issues with balance, motor functions, and some visual. Almost all of the symptoms went away after surgery. Then, since around April, some of them started returning slowly and now I'm experiencing the pre-surgery symptoms much more often.

Last follow-up MRI was in March and the neurosurgeon said everything was fine. Next scheduled is Sept. I am not sure whether I should request another MRI now or wait until September. My insurance will cover it, so no issues financially. But between scheduling delays and summer holidays, I will likely need to wait until September anyway. The suspense is daunting.

Is regression like this normal? What shall I do?

I'm 7 months post craniotomy. Oligo 3 GTR.

We planned a much needed family vacay for next month after this horrific year.

Now that it's here I'm scared and not excited to go. Not like me.

Being far from my medical team scares me. My oncologist said to take a steroid before flying just in case. I still don't understand why.

And I don't drink anymore. So I'm adjusting to that which is hard. I never had a problem but being on cancer meds I am choosing to take care of my liver.

Has anyone flown? Were you ok?

Any advice?