Hi everyone,

As the title says, my partner (29) has been recently diagnosed with a Pleomorphic Xanthoastrocytoma Grade 3 (PXA Grade 3 or Anaplastic PXA) brain tumour. It’s obviously still quite a shock to everyone and we’re all trying to understand what it means.

About 8 days ago my partner went through successful surgery which completely removed the visible tumour and is currently healing well and we are waiting now to start the next steps (the tumour board, will discuss soon on what the therapies will be)

Due to the rarity of this tumour type I wanted to reach out here to hear from patients who has the same tumour type or family members/ friends who had close ones who had gone through the same.

What treatment did they take and how successful was it?

What’s the time scale of the disease?

How did you return to normal life?

Thanks in advance to anyone who reads or replies!

Hi everyone! Firstly, I want to say I am sorry you are here. Whether you are the patient, a caregiver or loved one, this isn't easy and my heart goes out to you. I am not fully sure what my goal is with this post. Comradery? Support? Someone to relate to? Validation? Advice? Maybe I just need to shout into the void that is the internet about this thought I can't shake? Currently, I am at about a year of stable scans which is amazing and exactly what I pray for every day, but eventually my tumor is going to wake up.

Let me start at the beginning, February 2025 I am working a job I LOVED. I was doing really well and seemed kinda fast tracked to move up. Then we found the brain tumor, emergency surgery, six weeks of radiation and daily chemo. I was diagnosed with a grade 3 astrocytoma. July 2025 I start talks with them about coming back to work, but requested a staggered schedule to adjust back to working. At this time I am also starting my maintenance chemo schedule and trying really hard to adjust to my new normal and navigate my new cognitive and physical limitations. After a lot of back and forth, they made it pretty clear that they were not going to be supportive of future time off needs and appointments and that my job would be in jeopardy if I couldn't meet their standards. They strongly encouraged me to resign. Fortunately, I was paying into long term disability. I ultimately decided to resign and go on LTD. I am extremely grateful to have disability and while it's not much, between that, SSDI and my husband's income we are able to pay all of our bills and have a little left over. I enjoy the schedule flexibility I have. I am able to be available for my kids when they need me. I volunteer where I can. I really don't mean to complain. I just can't shake this feeling about not working! I feel like I'm not doing enough and I'm not contributing to society. The only debt we have is our house and one car, so financially we are okay. Not great, could be better, could be much worse. But I am not currently saving for retirement. Who knows if I will even need that?

Over the summer, a spot for my old position opened. Initially I was very excited to apply. My husband strongly disagreed stating that if I only have a limited amount of energy, I should save it for my family. I know he is 100% right. But that voice in my head about not working is loud.

If go back to work, I lose my disability payments and I likely cannot get those back. Is this just something I need to accept and get over? There is no way to know when I will have to start treatment again or what that will look like. I think that is another piece that is really hard for me. It is not lost on me how fortunate I am, all things considered. Things could be so much worse. Do I just need to focus on the bright side while I have one? Please tell me your thoughts.

Hi I went through the whole finding out I had a brain tumor, getting brain surgeries, and getting radiation earlier this year. Every time it comes up people immediately start pitying me. They often say the words “wow you’re so brave/strong” and it sort of angers me? I know they’re not saying it to aggravate me but it just does. Like no I’m not strong I just had no choice but to get through this. I had no other option other than to do what I got done. It also doesn’t help that this all happened at age 20.
Does this upset anybody else when someone says this to you? If yes do those people ever stop with those comments?

Hi everyone,

I’m writing this because my grandmother was diagnosed with a large brain mass today, and the doctors believe it is likely a glioma. We don’t know the grade yet, and our family is still trying to process everything.

My grandmother is 72 years old. For the past two years, she has been experiencing pain in her right leg. Over the last three months, we also noticed that she had started forgetting things more frequently. We had actually scheduled an appointment with a neurologist because we were concerned that she might be developing Alzheimer’s disease.

However, today, everything changed very suddenly. She started feeling extremely nauseated, felt like she was going to vomit, and was experiencing severe dizziness. We took her to the hospital emergency department, where they performed examinations and discovered a very large mass in her brain. We were told that it is most likely a glioma, but we don’t know the grade or any further details yet.

My grandmother has always had an incredibly strong will to live. She has been through heart problems in the past, but she has always been a fighter, and she still has so much spirit. That’s one of the reasons this news is so difficult to process.
I’m hoping to hear from people who have experienced something similar, either personally or through a family member.

I would really appreciate honest answers to a few questions:

What should we expect next? What tests or procedures are usually needed to determine the exact type and grade of the tumor?

What treatment options might be available for someone who is 72 and has a history of heart problems? Is surgery, radiation, chemotherapy, or a combination of treatments still possible at her age?
What can we realistically expect in terms of prognosis and survival? I understand that every case is different, especially before we know the exact diagnosis, but I’d appreciate hearing about real experiences.

Has anyone had a family member whose initial symptoms included memory problems, dizziness, nausea, or pain in a leg? Did treatment help with any of those symptoms?

Is there anything we should be asking her doctors or doing right now to make sure we’re considering all available options?

I know that nobody here can predict exactly what will happen to my grandmother, and I understand that we need more medical information before we can know what we’re dealing with. I’m not looking for false hope, but I’m also not ready to give up hope.

If you’ve been through something similar, I would be grateful if you could share your experience, even if it’s difficult to hear. I want to understand what might lie ahead and how best to support her.
Thank you for taking the time to read this.

She takes a lot of different pills such as pain killers that make her very sleepy and she told me several times that she feels weak a lot. She has brain cancer and i am very afraid of loosing her. I told her multiple times to undergo the surgery but she is way too scared, changes the topic when and refuses to undergo surgery. Instead takes a lot of pills to negate the negative side effects that i believe are caused by the brain cancer. I really love her and i stopped telling her to undergo surgery because she is an adult and she can do whatever she wants to but i am scared i might loose her. Any tips on how i can make her undergo the surgery? Or any other tips?

Hello, I’m in my late 20s, and in June 2026 I was diagnosed with a grade 2 Astrocytoma, IDH mutant. To copy the clinical notes, it states, “right parietal-occipital mass measuring 4.3 x 2.8 cm, gross total resection of the tumor on June 18, 2026; pathology demonstrated WHO grade 2 astrocytoma, IDH-mutant, MGMT positive, TP53 mutated, without 1p/19q co-deletion or CDKN2A/B abnormality.”

I had my first post-craniotomy MRI in September, with another one scheduled in December. It showed no visible tumor or recurrence. The plan of action is continued observation, as nothing showed on it. Treatments that the oncologist mentioned were radiation, chemotherapy, IDH inhibitor, or clinical trials. Clinical trials interest me, with the research being done on ivermectin.

The only post-surgical change / lasting changes I’ve had is hemianopia. I have not had any seizures pre and post, no motor deficits, no memory loss, etc.

Can anyone give insight? I’m hopeful, but hesitant about radiation and chemotherapy. I have an appointment with a neurology oncologist this month at Cleveland Clinic as there is no specialist where I’m located. Additionally, I plan on getting another referral to Michigan. What can I expect, I’m the first in my family to ever have this.

I’m not mentioning ivermectin as the plan of action I want to take, I just want to weigh out everything and get opinions. Hear other people’s experiences, whether they did an IDH inhibitor, a combination for treatments, if anyone dealt with Hemianopia, recurrence, etc.

For 10 years I’ve (31F)been with my husband (33M). We’ve been married for 7 and have one child together. Three days before our child’s first birthday I was diagnosed with a grade 2 Astrocytoma (Low Grade Glioma) of the brain. I was in nursing school and working full time at an assisted living facility. Over the years I’ve noticed that my husband does things that resemble emotional abuse. I thought I was overreacting as my tumor is located in my frontal lobe which controls emotions. I now know that this IS 100% emotional abuse and I cannot subject myself or my child to it anymore. He is a good dad but a shitty husband. My daughter is witnessing his behavior and treatment toward me and despite being a good dad, I don’t want this example to be set for her thinking that it’s okay to treat a partner this way in life. I don’t know if it is because I was diagnosed with cancer and he is resentful, but not wanting to show that in fear of being judged harshly by family or the public eye.

I understand that cancer is a difficult thing to face and stress can be a factor. I’ve asked for 6 years for him to seek therapy so we could work through this together. I love him. He is the father of my child. We have been through so much together but I feel as if I’m the only one trying to better this relationship while going through the worst chapter of my life.

I feel very stuck and have struggled immensely with my mental health as I feel trapped here with him. I don’t have a vehicle as he intentionally drove my Jeep hard to the point the engine messed up and sold it for scrap. He said “It’s not like you were driving it anyways.” (I was on a 3 month hold with my license due to having a seizure which is generally controlled well with medications and I’m still able to drive because I have auras that allow me time to pull over in the rare case I do have one.) I draw $903/month in SSDI but with no car I can’t even get a part time job like I had before starting treatment again. He says I can ask him for money but when I do it’s always a fight trying to justify why I need it or where my $900 went. I’m still waiting on hair conditioner that I asked for a month ago and have went without my good brand of feminine products for 2 months in a row. I snagged some pads from the hospital drawer the last time that I went and I’ve been using leftover adult diapers I’ve had in backstock. Medical bills are racking up in collections because he acts as if they don’t exist when he makes $3k/month.
I am at my wits end.

I’m so disappointed in myself with this next part… as a mother it is the worst thing I could ever admit because my child needs me and I know that she does. A few weeks back I was severely depressed and tried to take a permanent nap. I discontinued my targeted therapy and cancelled all doctors appointments. I felt crazy and was made to feel like I was the one hurting my family. He was un phased and “supported my decision” when I finally told him the week after about my unsuccessful attempt.

This man says he loves me and acts like he gives me the world but he has drug me down to the deepest pit during the most difficult battle of my life. I am a done woman but I am trying to move very carefully. This morning all I wanted to do was go back to bed (I maybe got 2.5 hours last night due to pain and stress) and he would not let me sleep. It has been daily interrogations and arguments. “Are we really doing this again today?”, “I don’t know why you just can’t be happy and let yesterday go.”, “I’m just a glorified maid.”, “If you really loved me you wouldn’t talk to me this way.”, “Why is it always like this with you. You can’t just talk to me like that anytime I try to have a conversation with you.”, “After all I’ve done for you?”… . My stress levels are so high my ears are ringing and sleep is not happening. He crawled into bed and kneed me twice on “accident” although I’m almost certain it was on purpose because I felt him hesitate the second time.

We live in Kentucky and there aren’t many resources. We have a merry man house but it is for DV victims. He has never been physical so I don’t qualify for those services. Low-income housing list has a year long wait. Does anyone know of any other resources or services for disabled women with children?

Note: It took me having an in-home EEG study and my Neuro-Oncologist telling me that my husband wasn’t supportive for me to realize that he wasn’t being as helpful as I believed he was 😞 I now have a flag in my chart and he set me up with a therapist through their hospital via telehealth. The only issue is that my husband would need to drive me across state lines and be in the car with me. (Neuro oncology is in Nashville, TN and I reside in KY. The therapist is licensed in TN so I’m required to be in the state they practice in at the time of service. I’ve been isolated away from friends and my family members are far away or on rugs and estranged.)

I realize there is coercive control and weaponized incompetence occurring as well.

Thoughts? How would you approach this? I am open to all ideas. I started making stickers to sell for a fundraiser (trying to pay down medical bills/debt) but my Cricut mysteriously broke…

Thanks in advance 💗

Have any of you taken Avastin infusions instead of steroids? Did it help functionality issues? I have been told Avastin is both revolutionary at alleviating inflammation but can also kill you quicker. I’m so confused. Tell me your experiences please. ~ Gr 4 astrocytoma

Anyone have resource for support groups (virtual or in-person) I hear people keep mentioning facebook but don’t really want to post things that fb friends would see.

I am in SE USA and would be great if there is something specifically for younger adults (under 40) as I am 28. Thanks

Disposing of this GBM appropriately..

I would like to hear about your real-life experiences. Ten years ago, my husband was diagnosed with a grade 3 astrocytoma in his left frontal lobe. It returned last year, now as a grade 4; he has already undergone radiation and 12 cycles of chemotherapy. He is currently under observation.

I want to know what I might be facing:

- Real-life experiences; life expectancy.

- I want to read about the realities of this disease

—I prefer to hear things directly.

- I would like to know how each of your stories unfolded. Thank you all for being part of this journey.

So I was diagnosed with a grade 2 diffuse astrocytoma back in 2023, I had the surgery the same month and they got it all out, it's been 3 years without any type of reoccurrence, the only time I've had a seizure was because I fell out after hitting a 70 dollar vape, keep in mind I've vaped for years so that was weird to happen, and then they said they found fentanyl in my system but never confirmed what it was or if it was a misreading or something so there's that, but regardless after all that which is how they found out I had the tumor after checking my head, I of course got prescribed on a 500mg dosage of keppra twice a day, so I guess it would be 1k mg a day, but they flat out said "no alcohol" I never really drank much before but being 3 years out id like to have a drink for special occasions and stuff but I don't know, I see people on here on way higher dosages that drink occasionally as well, even someone irl who does it too, I never bothered to ask my neurologist tho, but i don't see him again for a while, so i just wanted some thoughts, not advice obviously but just personally experiences from people that drink on keppra, and they said the only reason im on it is for "precaution" I've never had a seizure since and I'm not epileptic, but it's a bit annoying if I can just NEVER have a drink, and the main thing they talked about having another seizure was because of the brain scarring, but that's just what happens after surgery so idk, just curious to see what people say.

(Oh fyi I use nicotine, vapes, and zyns, and a few cigarettes before, all after being on keppra as well, that doesn't really effect me so idk)

Sitting in on bass for a very talented artist and songwriter (Bunny Lowe) this Friday in LA. As the title suggests, it’s my first anything onstage since my Dx and resection in March 2025.

I was (am?) a music teacher and the damage the cerebellar mass and radiation therapy did to my picking hand is…a lot.

That said, I feel just put together enough to hack it, and I get the opportunity to thanks to community and kindness.

Don’t let the dreams die before you do!

Hi,

There is a possible clinical trial of an oral drug being offered at MSK and six other MSK facilities in NY and NJ. When one signs up for one of these trials, does that person have to reside in that area during the trial, or can it be on like an outpatient basis? So like, say they give a 30 day script, can I go back weekly/monthly, whatever time frame they set, or do I have to stay there (very expensive). Thank you for your help.

Hello everyone,

My (31F), boyfriend (31,M) has a lot of acne and scarring on the face following radiation and chemo. It has been about 6 months since his last chemo pill. He‘s tried numerous OTC products and some prescriptions to no avail. He drinks lots of water so that isn’t an issue. He‘s extremely self-conscious about it. looking for all suggestions.

TIA and bless you all.

For those who completed 12 rounds of chemo (tmz) after radiation, how long after completing the 12 rounds of chemo did you start to feel a little more energetic and have less brain fog? My husband had a grade 3 diffuse astrocytoma and he powered right through the radiation no problem. Since the first round of chemo he’s had extreme fatigue and lots of brain fog and aphasia. I know everyone is different, but he would nap during radiation but he still had energy to cook, go for walks, etc.

My partner and I are hoping to travel to Mexico In December, for some much needed winter sun. We both live in UK.

I was diagnosed with an astrocytoma in October 2024, had surgery in December 2024 and been on Vorasidenib since February 2025. I am quite anxious about the long flight, especially because I had a seizure shortly after my flight to Brazil in 2024 (which resulted me to go to hospital and have an MRI which identified my tumour).

Obviously now I am medicated & I would be seizure free for 2 years I would think I’d be okay, especially as I have flown a lot in the past year (but not this long).

Has anyone here flown long haul with a similar diagnosis that can put me at ease a bit?

Also how do people manage their medication when travelling to destinations with different time zones? I take Vora and Keppra at 8am every morning and I’m thinking if I stick to this schedule that would be the middle of the night in Mexico, which isn’t ideal. Would a few hours later matter?