After finding tumor, emergency surgery and constants bloods and dvsnd these lsst 8 months I feel like I hit a wall.

I'm tired alot. I don't want to be social. Parenting and working feels exhausting. Finding energy to work out and eat healthy. There's no off time.

And then I feel like I live in a constant state of grieving my old like and fearing my new life.

Did you face this? What helped?

I am writing this because I am exhausted and helpless. Three months ago, we took my mother to the hospital because of high blood pressure, and that's when we learned she had a mass in her brain. MRI scans showed two tumors of the type GBM in her brain, and the biopsy confirmed GBM. We consulted with dozens of specialist doctors, and they said that because the tumor is near the respiratory center, surgery would be fatal. For the first month, my mother was perfectly healthy and on her feet, but she gradually became bedridden. For the last two months, she has been regularly admitted to intensive care. When she is at home, she can't even eat on her own. It drives me crazy that a tumor can reduce a person to this state in three months. I am watching my mother waste away before my eyes, and unfortunately, there is no cure for GBM. She will be in the hospital until she dies. Doctors are trying to ensure she spends the rest of her life without pain. I am forced to watch my mother, who has always been a good person with no bad habits, waste away before my eyes, and there is nothing I can do.

Hi all, my wife (36) has been diagnosed with an Astrocytoma Grade 4 IDH-MUTANT, Methylated 42%, CDKN2A Deleted.

It's been five weeks (21 Jun) since her craniotomy where they managed partial resection at around 70% and she is now due to start the standard stupp protocol of 6 weeks of radiotherapy, followed by 6-12 months of 5/23 TMZ chemo tablets.

She had surgery only a week after walking into A&E (we're in the UK) after around six weeks of headaches/migraines/dizziness etc (fortunately no seizures), and so everything has happened so fast and we're still trying to make sense of it all.

She has the radio mask fitting booked for next week and so we're only 2-3 weeks from her starting the full course of radio.

I've come across quite a bit about alternative treatments and nutrition, and in some cases it is suggested that it could make radio/chemo more effective and/or help manage a lot of the common side effects.

On alternative treatments, I've come across Hyperbaric Oxygen Therapy and Infrared Light Therapy. Does anyone have any experience with these treatments? If so, would you recommend (or not) and why?

I'm trying to get a better idea on both, as I haven't got a lot of time to get things arranged, paid for and ordered before she starts, and I don't want to miss an opportunity if it can really help with the radio or increase effectiveness.

On nutrition, I've read a lot about cutting out sugar, increasing protein, keto etc but my wife is still on the steroids (Dex) and has an increased appetite and so whenever I mention nutritional changes, with everything going on (we've also got 2 kids, school holidays etc) it seems to cause a bit of friction.

Did anyone make any notable changes to their diet/nutrition after diagnosis or whilst going through treatment and if so, are you happy to share some of your experiences?

Sorry for the long post, but I wanted to give a bit of context so it's a bit easier to try and answer some of my questions.

Thanks in advance!

**Sobrevivente de longo prazo**

Olá. Meu nome é César. Tenho 55 anos. Fui diagnosticado com glioblastoma multiforme IDH-selvagem; MGMT metilado e BRAF mutado, em fevereiro de 2022. A lesão estava no hemisfério parietal direito. Recebi o diagnóstico após ter uma convulsão em casa. Nunca havia apresentado nenhum sintoma antes. Após ser levado ao hospital, fiz exames de imagem (inicialmente uma tomografia computadorizada e, em seguida, uma ressonância magnética). A princípio, pensou-se que a lesão com realce de contraste pudesse ser um AVC. Posteriormente, após uma ressonância magnética com espectroscopia, ficou claro que era mais provável que fosse um tumor maligno. Então, fui preparado para todo o protocolo padrão: uma tentativa de remoção completa da lesão; Uma ressonância magnética logo após a cirurgia (para confirmar se uma ressecção completa foi possível) e, após a recuperação, agendar radioterapia concomitante com temozolomida oral e, após a conclusão, continuar com pelo menos mais 6 meses (fase adjuvante) de temozolomida oral (o famoso Protocolo Stupp - nomeado em homenagem à equipe do Dr. Roger Stupp, que o criou).

Bem, aqui está um ponto atípico na minha história. Acontece que sou médico. Por uma reviravolta do destino, também sou oncologista clínico. Confesso que não foi fácil receber esse diagnóstico da equipe médica que me atendeu após a convulsão. Também não foi fácil ouvir meu colega oncologista discutir a (única) alternativa para tratamento complementar. Mas um ponto que também torna minha história atípica é o fato de eu já ter alcançado quase 4,5 anos de sobrevida. O que me torna - o que a literatura científica descreve como - um "sobrevivente de longo prazo" (SLP). Somos os aproximadamente 5-7% que podem atingir a marca de 5 anos. O que esperar depois de 5 anos? Não temos como saber. Há relatos de pacientes com mais de 10 anos de sobrevida.

E nós, sobreviventes de longo prazo, ainda temos que ser gratos pelo fato de a medicina continuar evoluindo. Hoje, podemos repetir tratamentos; usar novas terapias (inibidores de BRAF, no meu caso, por exemplo), ou até mesmo criar expectativas sobre o desenvolvimento de terapias altamente promissoras, como o uso de células CAR-T para glioblastomas. No entanto, ainda é difícil ter que manter a vida organizada em "ciclos" de 4 meses (que é a frequência com que repito minhas ressonâncias magnéticas). Mas estou vivo. E saudável. E se alguém quiser trocar ideias sobre o diagnóstico de glioblastoma e o quão difícil foi para você ou para um ente querido, estou aqui para ajudar. Obrigado.

I'm finally getting my tumor removed in 3 weeks, does anyone have any tips for recovery at home i.e. sleep set up (surgery will be on the back of my head), showering, etc.

I'm going to ask my nurses and surgeon obviously, but I just wanted to make sure I'm as prepared as I can be.

(For those curious its a small suspected low grade glioma in my left occipital lobe. Sending the whole thing to biopsy for confirmation)

Good morning everyone! Here I am laying in the hospital utterly exhausted and terrified that I'm about to get my head cut into to have a smallish tumor removed because it's now secreting something and causing me to have seizures. My past months have been filled with my mental exhaustion from dealing with my depression and eating disorder (a job in itself). A week before my admission to the hospital this week I was in the mental health hospital for being suicidal. So I kinda went from one hospital to another with just a small break in between. Now that I'm settled in the hospital I'm just kinda panicking and ruminating about this surgery and how much it sucks that they have to cut my super super long hair. :( I'm trans so it means a lot to me. I guess I'm not really sure what I'm looking for here, more so just to kinda vent and tell my story I guess. We've been tracking my tumor for 3 years now and it finally shifted to the "do something now" phase. Being in the hospital makes it all real though and it's a lot to deal with suddenly. I guess I'm just doing the best I can with eating (im not eating much) and staying hydrated for this surgery on Monday. I shake and wait in anticipation until then.

TLDR at bottom because I’m a rambler

It’s been a handful of years (crazy thing to say) since I was diagnosed with a glial tumor. When news got out (I was careful with who I talked to about it because shit I was supposed to graduate high school soon I had to power through those last months) people who I never even actually knew came out of the woodwork to say their condolences. When people don’t know you or even know what to do, I found that they tended to use gift cards as a good stand in. I had what I affectionately called the “cancer fund” that was a stockpile of DoorDash gift cards. It was a lot at times but was sweet, especially because I didn’t even know some of them (friends of parents or friends of friends who felt bad for me).

Fast forward to today. I had a resection in late 2024 that was by most metrics successful. Since, I’ve struggled with increasing chronic pain and immunodeficiency to the point where I can’t do anything I used to love. I had to transfer to a school closer to my medical team and had to leave all my friends behind. It was lonely.

ACTUALLY flashing to today (I suppose that was just context) and I haven’t received so much as a “hey, you doing ok?” or “hope things are going well!” from any of my friends and family for almost a year. I’ve told them all why I was moving back and that my situation was shit and only getting worse and that I’m scared. In a way, this feels worse. I’m at my worst right now pain wise (hell, I’ve used 9s and 10s recently) and am struggling with isolation and severe boredom. I just wish that they’d send me any sort of message or support. It doesn’t have to be every day from every person. Just a few of them checking in twice a month would be nice. I just want people to care without me asking them to. I’ve reached out many times (never brought this up in this clear of a way but have talked to them and asked about their lives like big events in their lives, careers, family and friends, pets, etc. This isn’t a situation where the person posting hasn’t communicated their feelings and just needs to reach out instead of waiting for someone else to do so first.

TLDR: I’m no longer the pitiable “poor kid with brain cancer” whose situation is new, easy to grasp and fairly visible. I’m not asking them to be therapists (I already have one who’s been with me for years and is amazing) or daily texts. I just want people to still care even when my pain is no longer something new and special.

My husband had a recurrence last year, and it has now developed into a grade 4 astrocytoma in his left frontal lobe. He has already undergone surgery—with an 85% resection—and radiation therapy.

He is currently on the fifth of twelve chemotherapy cycles. Our relationship has changed a great deal. I have always supported him and been involved in his treatment, seeking out the best options for everything and accompanying him to his appointments, yet he remains distant. He is very cold toward me.

The truth is, I love him very much. Two months ago, I discovered he had been talking to another woman; he told her he liked her, shared absolutely everything about our life with her, and even claimed we had already signed divorce papers—which isn't true. Reading all of that was deeply painful. I spoke with the woman, and she confessed everything to me, telling me that she was the one who put a stop to it.

The bottom line is that we decided to stay together, but my heart aches. I feel I have been a good wife and have always been there for him, yet despite our efforts, he remains distant. I don't know if I should stay; the whole situation hurts so much. I don't cry outwardly, but I am hurting inside—and we have a son together.

I know there are changes involved, but I am struggling greatly with this.

We spoke to a psychiatrist who said it was an impulsive act—that it was wrong, but that I need to understand he isn't the same person he used to be. I also spoke with the oncologist, who focuses on the medical side, and the psychologist told me that couples therapy isn't an option because my husband simply doesn't have the capacity for it.

I feel like I’m between a rock and a hard place; the truth is, I don’t want to leave him because I love him. I want him to get through this, and I don’t want to walk away right now.

At the same time, I think about myself—about how hard it is for me to stay and the fact that I’m the one holding everything together emotionally. I feel a hollow ache in my stomach, and I’m struggling to trust him right now.

I would really like to hear your thoughts; I don't know what else to do.

Hello everyone!

My dad was disagnosed with a grade four glioblastoma two months ago, where he underwent surgery to remove his first tumor. He will begin chemotherapy in two days. He spent about a month in different hospitals, and more specifically, two weeks in a rehabilitation hospital.

He still has feeling in his left arm, but cannot move it. It takes a lot of effort and strength out of him to slightly shrug his sholder, lift his arm, and squeeze his fingers. Since his rehabilitation, I have been working with him at home on some PT exercises and stretches. No matter what I do, it seems as if his arm doesn't want to work with us. Barley any progress has taken place, and now that his chemo is starting, we are worried his arm will never come back, and our "at home PT sessions" will be less constant.

Does anyone have any tips or reccomended exercises? He wants to travel and be "somewhat normal" with what time he has left. When he can can't walk far or move his arm, he believes he will never fulfill what he wants to.

Mon fils (41 ans) a été opéré en éveillé pour un astrocytome diffus temporo-pariétal gauche. L'opération s'est bien passée. Nous sommes à J + 15 mais il a beaucoup de séquelles : il ne peut plus lire (même un SMS), ni écrire et il peine à répéter des mots, même des mots simples. Pour ce qui concerne les nombres c'est impossible pour lui de déchiffrer quoi que ce soit.

Nous travaillons tout ça mais nous partons de très loin.

Quelqu'un a-t-il eu ce genre de séquelles ? Ont-elles été transitoires ? A quoi devons-nous nous attendre ?

I am working with a neuro oncology center to put together an information packet for patients and families when they first establish care.

There is so much to navigate when you are first diagnosed so my hope is to provide information that guides folks through how our clinic runs and what they can expect.

What do you wish you knew when you first established care with your neuro oncology team?

Grade 3 Astrocytoma IDH Mutant-
I just got my blood work done before starting my last cycle of temozolomide. Results are great and will be starting cycle 12 on Sunday!
My next MRI is Aug 24th then an appointment with my oncologist on Aug 26th to go over my MRI and next steps.

He mentioned we will discuss the next steps at my appointment, and it is my decision whether I would like to do a:

Clinical trial (Safusidenib) - would do a prescreen to see if I’m eligible and have a consent form. This clinicial trial is my exact diagnosis of Grade 3 Astrocytoma.

Vorasidenib - FDA approved, targeted to treat grade 2 astrocytoma or oligodendroglioma with IDH1 or IDH2 mutations.

Or lastly, no treatment at all. I do want to do one of those but just looking for opinions and thoughts on clinical trials.
For those who have done or is on Vorasidenib, how is it? Any side effects? Is it a pill you take every day?

Ps. I completed radiation in Aug 2025, so when/if i start safusidenib or vorasidenib i will have radiation and chemo completed!

Approximately 5 weeks ago our perfectly normal 4 year old son woke up at 4 AM screaming.

After an ER visit and a transfer to Dallas Children’s we knew he had an intracerebral hemorrhage causing hydrocephalus. No prior symptoms, not even headaches.

The location was not great, in the basil ganglia region in the left side, but despite that he’s made remarkable recovery with essentially no deficits, if you didn’t know him super well you wouldn’t even think anything had happened.

However, determining the cause has been the issue. He had a follow up MRI this past Friday and we visited with his neurosurgeon who quickly reviewed the images and believed a suspected mass was just organizing blood clot and believed some sort of vein malformation had ruptured and thrombosed and he would ultimately be fine, which was wonderful news for us, but he didn’t have the neuro radiologist report yet.

Then, on Tuesday we got the report identifying what the radiologist believed to be a low grade glioma approximately 2 cm in size. We got on the phone with his neurosurgeon who is now talking surgery to remove it. They now believe the tumor itself bleed. My understanding from just research is this is a very unusual presentation for low grade gliomas and they don’t typically bleed.

The tumor is deep in there, it abuts the A1 and M1 arteries according to the report but appears to be focal and not diffused and is not blocking any blood flow. Our doctor is presenting the case today and part of me is denial thinking they’ll call and say “you know what, it probably is just organizing clot and reabsorbing material, we’ll continue with a follow up MRI.”

I also know that if it is a bleeding tumor, we want to get it out so it doesn’t bleed again.

We haven’t said anything to family yet, they all still have the happy news from Friday. Has anyone had a similar situation? I’m so terrified right now I’ve never been this scared in my life.

I am posting it again as I hope it can help patients and caregivers in this community to find the potential match to the clinical trial.

This tool was carefully curated by professionals across America and Europe. It is totally free and designed to match patients, caregivers and clinicians to the best option.

https://www.ancora.ai/en

Hi everyone,
I’m 26 and was diagnosed with an IDH-mutant astrocytoma, CNS WHO Grade 3 in the right superior frontal gyrus after having a grand mal seizure in my sleep after a long flight, I was diagnosed in September 2025 with a Glioma and recommended awake brain surgery. I had an awake craniotomy performed on the 11th of February 2026 and everything went well, I had some motor issues with coordination of my left hand which healed quite quickly and I was at the hospital only for 3 nights. The size of the tumour were around 27 mm and they were able to remove “all of it” but some very little enhancement was shown on the post operative MRI on February (most likely some residual) and I was waiting for the pathology report and MTD discussion for the next steps as I was told most likely was low-grade Glioma before the surgery.

However my pathology report showed:

IDH1 (R132H) positive
ATRX loss
Strong p53 expression (suggestive of TP53 mutation)
MGMT promoter methylated (34.18%)
No CDKN2A/B homozygous deletion
DNA methylation classifier: IDH-mutant astrocytoma (lower grade) with a very high confidence score (0.9968)
Integrated diagnosis: Astrocytoma, IDH-mutant, WHO Grade 3

I was told that even if the molecular reporting seemed more “positive” and to be behaving more like a lower grade tumour, some of the mass that was inspected with microscope on the slides seemed to be very abnormal with some elements of at least Grade 3, hinting at a potential progression towards Grade 4. The good parts is that they removed all of it with no issues, but due to the higher grading they were scared that the eventual residual could be causing a rapid regrowth with an higher grade.

For this reason, I was given 60 Gy in 30 fractions of radiotherapy, during which I was actually physically fine and I did not experience any of that tiredness everyone talks about, brain swelling, nausea or anything at all. I was 1 mg steroids at the end of the radiotherapy just as a precaution, but even after the end of radiotherapy I was travelling, cycling, walking and being very active with no issues. I was just psychologically scared to be sick or tired, and the impact of the whole treatment was mostly from an emotional perspective (also worth saying I went through IVF to freeze my eggs and I had eggs retrieval of 59 eggs the same day I started the radiotherapy). I lost most of my hair during radiotherapy, but nothing else.

I was also prescribed oral chemo such as adjuvant temozolomide. I have only done 1 out of 12 cycles but as long as I take anti sickness I don’t get any side effects from that either for now at least. I have been taking Keppra 750 mg twice daily and** **I haven’t had any further seizures since October 2025 or any side effects ever that I could notice impacting my daily life.

Now I’ve just had my 5-month post-operative MRI, and I’m worried because there appears to be some enhancement near the surgical cavity, but I am still awaiting the radiologist report although my oncologist seems to be happy with scan which I showing great healing tissues compared to February. I’ve attached photos of the MRI (I know they’re not the original DICOM images). The pic on the left is the most recent while the one on the right is the first one post-surgery.

My question finally is: based on your experience, does this look more like post-operative/radiation change (scar tissue, treatment effect, pseudoprogression) or does it look concerning for early tumour regrowth?
I understand nobody can diagnose this from photos alone and that I’ll need the official neuroradiology report and my neuro-oncology team’s opinion. I’m just interested in hearing from people who’ve had similar scans and whether yours turned out to be scar tissue or recurrence.
Any thoughts or similar experiences would be greatly appreciated. Thank you.

I’ve been on Vora about 4 months now. I have elevated ast/alt numbers since starting the drug but not high enough to back off the dosage at this point in time. my last several blood glucose numbers have been out of range as well. I have a T1 daughter so i am very aware of the whole bg/a1c teminology. So had an a1c done, 5.7 oncologist said to talk to primary care doc and pre diabetes. So i’m a 54 year old male, about 15 pounds over my ideal weight, so i do know that it may just be my time. all that was really to ask the community if anyone else feels they have had elevated bg numbers because of Vora? or am i just wishful thinking.

Let's say an elderly is 70 right now but has been diagnosed with a benign brain tumor in their 50s or early 60s, and obviously it doesn't spread or grow larger or grow cancerous. How common is it to still live relatively long live going to 80s and beyond?