Heyy did anyone else here get diagnosed as a young adult and have to move back in w your parents for them to help you? How are you handling that?
Edit: adding my story
I got diagnosed with AA2 when I was 27. But I had to move home at 31 (2 months ago) bc my second craniotomy made me have a stroke and get paralyzed. My first craniotomy went well and my mom just had to stay w me for a couple weeks at my place. But I had a recurrence and the craniotomy for that one is what made me paralyzed/need help w daily activities. It feels super weird for me bc I haven’t lived at home/in my hometown since I went off to college at 18! Like I’d literally been living in different states for 14 years and then suddenly had to move home at 31. I’m on disability rn too/not working so I kinda have nothing to do either which sucks. I kinda just work on my pt and ot most of the day. I feel like if I wasn’t paralyzed, not working could have been sorta fun, but alas.

Hi everyone, I am 24F and I’ve gone through three brain surgeries so far (I have a fourth coming up). Long story short I was diagnosed with brain cancer when I was 21 and they are treating the tumor as a glioblastoma, although it was unable to be identified by WHO standards. My most recent surgery was to take out a tumor that grew back slightly above the original tumor. I had experienced the left side weakness before, but this time it is way worse than I remember. I’m able to walk but my left arm is very weak and floppy. I was in rehab for a week and was able to recover my walking, but I was told by an OT that my left shoulder is subluxed. I’m wearing a brace on my left wrist because it is floppy and cannot stand up on its own. Just looking for advice I guess or ways that you all have experienced differences in your body after brain surgery and how to recover from them.

I have a grade 3 astrocytoma and they mentioned something about Melina’s inhibitor curious if y’all know anything about this or have any wusses with this

Hi everyone 23 year old M here and I have a very rare and unique glioma called HPAP, which stands for high-grade glioma with pleomorphic and pseudopapillary features. In July 2025, I had a gross total resection and went with a watch-and-wait approach. Given how rare my tumor is, and the fact that it is considered a circumscribed glioma, my doctors felt this was a reasonable approach. However, in mid-April 2026, there appeared to be a very subtle recurrence within the resection cavity that has slowly grown since then. My August 2026 MRI showed the lesion to be slightly larger and confirmed that it is growing at a slow rate, more similar to a Grade 2 or “favorable” Grade 3 glioma. My neurosurgeon said it is too small to resect and recommended radiation therapy, so I am scheduled to begin proton radiation at the end of September. I obviously do not know exactly what to expect or how things will go, so I am curious to hear about other people’s experiences with radiation. What short- and long-term side effects did you have? Did anyone experience permanent hair loss? Did anyones glioma stay under control for years? I would also love to hear from any long-term glioma survivors who are 7–10+ years out from diagnosis. I appreciate all perspectives — thank you!

I am asking for my 5-year-old niece. She had Posterior Fossa anaplastic Ependymoma in 4th ventricle of her little brain. It that has come back after 3 years of clean scans. She had removal, chemo and radiation the first time when she was 1. Now the surgery is risky and it has spread deeper. The doctors will do the surgery and remove the most they safely can. She may have more than one surgery as they believe is safe to do for her. While this is being done, I am trying to find any other ways that have worked for this type of tumor. I have been reading about FECO, ivermectin, mebendazole/fenbendazole to shrink the tumor. Has anyone tried any of it and it worked for their child. Please tell me anything and everything. Need all the resources we can get that may help.

Necesito que alguien me opere para bajar el volumen de un oligodendroglioma difuso con IDH mutado y codeleccion 1p19q que me han diagnosticado hace casi 2 años . Los doctores dicen que no se puede ni operar ni dar radio,solo quimio. Ayer me enteré de que ocupa el 62%del volumen cerebral, asi q es más de la mitad del cerebro y sobre todo tengo afectado el lado izquierdo,cuerpo calloso y parte del tálamo. Llevaba con dolores de cabeza desde hace años pero tras 10 meses de pvc los dolores han remitido y está menos nuboso pero el contorno sigue siendo el mismo.

Me gustaría probar vorasidenib y que alguien me operase para resecar la mayor zona posible.creo que es mi última oportunidad . No tengo síntomas increíblemente, a parte del cansancio acumulado de la quimio Y me encuentro bien. La verdad que creo que los doctores flipan. Me han tenido en observación desde Noviembre del 2025 y ahora se observa un leve aumento.

Quería daros ánimos a todos los que pasáis por algo parecido, y Ojalá algún doctor lo lea y se atreva a operarme que hoy en día hay muchas técnicas increíbles. No tengo dinero porque no me dejan trabajar y encima no me han dado la incapacidad por haber cotizado más en Holanda ,en total han sido casi doce años...

Necesito ayuda por favor 😔

Привет, AA3 была операция в мае , потом лучевая с темзоломидрм . Сейчас началась адъювантная терапия темзоломида по схеме 5 дней по 300 мг / 23 дня отдых . Сегодня после приема четвертой дозы , произошли судороги с потерей сознания . У кого нибудь было так ? Это из за темзоломида или что то другое?

Hi everyone, I've been mostly lurking here for a while and wanted to introduce myself. I'm Tim and tomorrow will mark 2 weeks since my surgery to remove a 4cm oligo tumor from my right parietal lobe. I had surgery at Cleveland Clinic which is just a 2-hour drive from home. The team there is incredible. They achieved a near total resection. They left a little next to my visual pathways. I was up and walking around less than 24 hours after surgery. 48 hours post surgery I was discharged. Two days ago I went back to get the staples removed and meet with the oncology team. So far everything looks good with initial tests showing EGFR negative and positive for 1p/19q codeletion. They are recommending radiation but chemo may not be needed depending on the final pathology report. I have some issues with awareness of things on my left and knocking things over with my left hand. Typing is a real struggle as I no longer have the muscle memory to type without looking and focusing on every letter on the left. It's quite exhausting. The tumor was right in my brain's "GPS computer" for my left side. I will have to relearn typing and other things but thankfully the brain can be rewired. I am about to turn 57 so I hope to still live a normal lifespan and just learn to coexist with this cancer. So far I feel pretty lucky that we caught this and the pathology looks favorable for a good outcome.

Hey All,

I was diagnosed with Astrocytoma G2 IDH mutant. Had surgery, radio and then chemotherapy with Temozolomid. I was on chemo for about a year (maybe less) and ended it in November 2025 but I have noticed that since then stomach issues did not end even though my lab test are perfectly fine. No matter what I eat I am bloated, my stomach hurts and I don't feel comfortable. Going to the bathroom helps but it's not always possible. This does not happen everytime but I would say it's 8 out of 10 times. Did any of you have similar experience and maybe found a solution...

I am just really tired of worrying that if I will eat I will feel worse than before eating or thinking where the nearest bathroom is..

Pacienta de 38 ani cu astrocitom difuz grad IV, idh negativ, nemetilat, operat, radioterapie, temozolomida.. la 4 luni de la operație a apărut recidiva. Trebuie reinterventie chirurgicală. Exista vreun studiu de faza 3 cu rezultate bune potrivit diagnosticului?

Hi friends. I (27F) was dx with grade 3 oligodendroglioma when I was 21, no GTR because it was right in the middle of my left temporal lobe. Had 3 rounds of PCV which I tolerated very poorly and then switched to 24 rounds of TMZ.

Things have been stable since then and I’ve just been on monitoring scans for the last 4 years or so, obviously taking seizure meds which I assume I will do for the rest of my life! I know I have been incredibly fortunate in terms of my treatment journey, basically no sx intervention other than biopsy, no radiation, pretty limited chemo rounds and (thank goodness because I wouldn’t have been able to afford to live otherwise) I managed to work 90% of the way through treatment although it was pretty awful. All of this to say - I am grateful for how things have gone so far and aware of my privilege!

I just was hoping to connect and ask if anyone else with a similar tx history has struggled with ongoing fatigue challenges after finishing or pausing treatment? It’s been almost 5 years for me and I still am exhausted just doing a normal days worth of “stuff”, when I come home from work I have to get into bed, I can’t clean more than one room in my house without needing to lie down, going to a social gathering takes me a month to recover from, I used to do 20,000 steps a day and now I maybe do 5,000 on a big day and then can’t get out of bed the next. A lot of the time i try to just power through it but then it seems to sort of come crashing down and get really bad and I get sick on top of feeling exhausted. My bloods are all WNL and I’ve tried all sorts of different supplements and lifestyle changes but nothing seems to help and it’s hard because nobody around me really understands what it feels like. If you can relate in any way I would love to hear from you x

My dad ( 59 yo ) has been diagnosed with cerebellum tumor , he has been undergoing chemo for hodgkin's lymphoma for past 6 month , everything was going well for it. last week he changed in one day into different person , he couldnt ballance , vomited on food or water , hearing got worse , coordination got worse , had very severe headaches , couldn't talk clearly and it got progressively worse each day. we took him to hospital where he got CAT scan on head and they didn't see anything unusual , after 3 days when he just wasn't in his own mind we made an MRI and it showed 5.6cm tumor on cerebellum . for the last days we were looking for best possible neurosurgeon in Georgia ( country ), and after 3 days of MRI and 3 doses of 8mg dexamethasone everyday ( which drastically improved him , i almost thought it was a miracle, he doesn't remember last 7 days ) last night they removed it .

As the surgeon said removing went well , they removed most of the tumor , 90-95% , and he also said that it looked very aggressive , with a lot of blood vessels on it , extreme blood loss from it while removing , but they were happy with how they stopped it and how overall surgery went.

Our surgeon seemed very concerned , but he told us that we should be waiting for biopsy now to start treatment .

My dad had 8 years ago tuberculosis , which went well and was making checkups .

From february we started treating hodgkin's lymphoma and it was going also well with chemo

He has Diabetes for almost 25 years , without need for insulin , treated with tablets , recently we needed insulin because of treatment for cancer spiked it up.

Please share your experience if anyone has experienced anything similar to this, i'm very scared and confused right now.

Any advise , or sharing your story would be much appreciated

Thank you , and wish any of you healthy life

I’m looking for experiences from people who attempted to return to the standard 40 mg dose of vorasidenib after hepatotoxicity.

My course so far:

• ALT/GPT peaked at 226 U/L
• AST/GOT peaked at 120 U/L
• Vorasidenib was paused for 7 weeks
• I then took 20 mg for more than 4 months
• My oncologist has now approved another attempt at 40 mg
• For just over two months, I have also been taking a milk thistle extract providing 87 mg of silymarin three times daily. I do not know whether this contributed to the improvement in my liver enzymes.

Has anyone had a similar course and then been able to tolerate 40 mg long-term? I’m equally interested in cases where the re-escalation failed.

If possible, could you share:

1. Your peak ALT/AST levels
2. The duration of your treatment break
3. How long you took a reduced dose
4. Whether and how quickly your liver enzymes rose again at 40 mg
5. How long you have remained on 40 mg, if successful

For context, I have an IDH1-mutant grade 2 astrocytoma and my latest MRI showed mild, non-enhancing progression. I’m currently weighing two options: radiotherapy before a planned personalized peptide vaccine, or continuing vorasidenib at 40 mg with close monitoring in the hope that I can tolerate it and that it prevents further progression.

Because of the licensed indication and insurance situation in Germany, having radiotherapy would probably make it very difficult for me to continue receiving vorasidenib afterwards.

TL;DR: 2+ years after surgery, physically fine but still experiencing cognitive and emotional changes. Has anyone else experienced this long-term?

I had a colloid cyst causing obstructive hydrocephalus that was surgically removed on 5/3/2024. I had a right frontal mini-craniotomy with intraventricular microsurgical resection and a right frontal external ventricular drain.

I started therapy later than I should’ve about 10 months after surgery and have continued since. Physically I feel completely fine, but mentally I still have days where I feel more down than I did before. I used to be very happy and optimistic, and now I feel more stressed, negative, and have much more negative self-talk and lower confidence.

I had neuropsych testing about a year after surgery that showed difficulties with processing speed, attention, verbal memory, verbal fluency, and executive functioning. The evaluator attributed these changes to the cyst, hydrocephalus, and surgery.

The months after surgery were also extremely stressful. My niece had a seizure in front of me and was hospitalized for a month while I was alone caring for my 3-year-old nephew, my grandma later broke her hip, and returning to work was overwhelming.

I’ve also struggled with dating and feeling alone. Before surgery, becoming a mom was the one major thing I felt I hadn’t accomplished, and I had been planning to pursue becoming a single mom by choice with a sperm donor. Now I’m 34 years old and that still hasn’t happened.

I’m now 2 years and 3 months out. I’ve heard mental/emotional recovery can take around 2 years. Has anyone else experienced lingering depression, negative self-talk, cognitive changes, or just not feeling like themselves this far out from surgery? Thanks in advance for reading and commenting it means a lot to me.

Hey yall, I just have a few questions about this new medication I'm about to start taking daily. Quick history 1st. I had a GTR for a grade 2 Astrocytoma IDH Mutant type in the left temporal lobe. Im 38 now and was 30 then. It was done by Dr Friedman at Duke University and had no follow up treatment since then. I keep a check on it with MRIs through Winship at Emory in Atlanta, as we live up in Sautee Nacoochee near Helen, and Emory is main cancer hub and not too far away from us. Its been dead on 8 years ago since surgery and the last scan shows slow growth but still considered subtle and no jump in grade or aggression.

Ive been reading about this new med specifically for this kind of tumor at lower grade and not a wild type. It seems to have done really well at postponing the regular treatments that I will put off until an absolute necessity, especially the radiation on brain as Emory doc told me it would be bad idea in the future to attempt a 2nd resection because of the risk in damage. They're the same ones who before said its inoperable and thats why I went to Duke. We'll face that topic when its time and that kicked can comes to a halt.

They said main side effects were liver enzymes too high and fatigue, but that it differs for everyone and main one to watch is the liver and possible dosage change if necessary. Im not worried about that one, but the added fatigue makes me nervous. Ive battled Fibromyalgia for years and it comes in waves, but fatigue has been a battle more than pain sometimes. I already take Modafinil and my caffeine intake is much higher than 5 years ago, and some of those days are still so rough and I'm sure theres some of you who can relate with that phrase "chronic fatigue" and it gets exacerbated while playing Daddy to baby Luca at 10 months. Hardest but most beautiful thing Ive ever experienced. Whats yalls experience with this new drug and how many have gone through these side effects and have any of you battled chronic fatigue outside of the cancer diagnosis/treatment? Sorry for the short novel, but I didn't want to be too vague. I have many other questions, but I'll try to save for now.

My partner was diagnosed with a grade 2 astrocytoma three years ago after their first seizure. Since then they’ve been through proton beam radiation and chemo. Scans are clean right now, which we’re grateful for every day.

The thing we didn’t expect: the seizures came back anyway. Two more tonic-clonics in the last few months after a long stretch with nothing, the most recent in early August.

For those of you further out from treatment — did seizures stay part of the picture for you even with stable scans? Did they settle down over time, or is this the new baseline? Also curious how people handled the practical side. We both work and travel, and I’m not sleeping because I’m on alert all the time.

Would love any tips, experiences, advice on apps or wearables. Sorry if you’re going through this too — would love to find some community or a peer (40s male) to chat with.

Hello! Hope this is the right place to ask this.

After 2 brain operations in the last month, the kid age 5 still has 1 tumor left and some bits leftover and will start radiotherapy next week. I don't know the full details, but the last tumor extracted got back as ETMR and was growing like crazy.

How can I support the family that is going through this? I am a good family friend, been friends for years and I am at a loss on how to offer support. We do live in separate countries, but I can make a trip there.

Mask in the bag and heading home.

This is the term my wife uses to describe how she feels, post brain cancer surgery and chemo / radiation treatment in regard to understanding time itself (surgery 3 mo ago - partial resection at MSK). On the positive side , her short term memory encoding and recall of events is probably at 50% from 1-2% (luckily long term memories remained fully intact). The negative (aside from the obvious) is the concept of time doesn’t really exist anymore. Day vs Night, today vs yesterday vs a week ago. That said, these are things we can adjust too and I hope will improve. The journey is long and we are at the beginning. Living is the win, the rest can sort itself out.

Hello everyone

My husband is 35 and was originally diagnosed with a grade 2 IDH1-mutant astrocytoma in the right fronto-temporo-parietal region.

He underwent radiotherapy followed by Temodal (temozolomide). Despite treatment, the lesion has since increased significantly in size (around 10 cm, including the residual/tumoral area), and he is now having neurological symptoms.

His neurosurgeon has told us that another surgery may be possible, but they are waiting for the oncologist's opinion regarding the overall treatment plan.

There is also concern that the tumor may have become more aggressive / undergone malignant transformation compared with the original grade 2 diagnosis.

Has anyone here been in a similar situation?

Did you have surgery again after having radiotherapy?

Was the surgery considered safe despite the previous radiation?

Did pathology show that the tumor had transformed to a higher grade?

What happened after the second surgery?

If the tumor had grown substantially despite radiation + Temodal, what treatment did you receive afterward?

We are especially interested in hearing from people with IDH-mutant astrocytoma who had a recurrence after radiotherapy and temozolomide.

Thank you ❤️

what makes the cancer is the more likely the diagnosis (I know it’s not definitive yet)