I have had the occasional focal seizure since I was diagnosed with brain cancer in 2004. I had a partial resection followed by radiation and TMZ in 2019.
Over the past nine months, the frequency has increased. Yesterday my neuro onc prescribed Vimpat (50 mg 2x/day). My pharmacy had to order the medication so I will be starting it in a few days.
Does anyone here have any experiences with Vimpat that they’d be willing to share?
hi there,
my partner had 12 cycles of TMZ, ending in April. it was for a grade 2, oligodendroglioma.
about two months into his treatment, I started reading in depth about TMZ and saw that it can affect men’s fertility. This was news to both of us as his oncologist never mentioned it, so two months in, it was too late to sperm bank.
my question to men out there that had TMZ - specifically 12 cycles. have you since conceived naturally and how long did it take?
note that NZ guidelines on his Temaccord said to wait 3 months to try (which we are now well into that timeline) international guidelines say 6 months.
this is just a curious question, I know sperm analysis testing is available but it costs an arm and a leg here so just wanted to hear from others first.
thank you
Hi Reddit,
I’m (23F) in the UK writing this post straight after the discussion with my dad’s neurosurgeon and his formal diagnosis of a stage 4 GBM in his left temporoparietal region. I am his primary caregiver in this circumstance alongside my mum supporting me. I’ve been reading posts within this community to understand others’ experiences to better support my dad, and it’s been greatly helpful for myself - so thank you in advance for this read and solidarity.
My dad (59) had a sub-total resection on August 7th and we are currently waiting on his MGMT methylation status and IDH mutation results. His speech, language and comprehension have declined rapidly, with initial word retrieval symptoms first appearing 1st-2nd week of July.
Following resection, his speech and comprehension has deteriorated significantly. We are a bilingual household (English and Gujarati), and his English been affected more. He has also developed right-hand dexterity problems affecting using utensils/cutlery, doing fiddly things and when cooking.
My mum and dad run a small newsagent together with minimal staff. I’ve taken a leave of absence from my job to step in, manage the household/business admin, and support them full-time.
His priority is preserving his function, dignity and quality of life. He is very worried that chemoradiotherapy may worsen his symptoms, especially as his recovery from surgery has been slow.
We would really appreciate hearing from anyone with experience of:
· Bilingual aphasia and whether one language recovered faster
· Speech or hand function improving as post-operative swelling settled
· Early speech therapy, OT/PT, home exercises or useful adaptive tools
· Subtotal resection and whether molecular results changed treatment
· Exploring clinical trials before radiotherapy
· Supporting a loved one’s independence while taking over practical responsibilities or a family business
· Someone who has had a GBM or brain tumour in a similar region
The current preliminary plan recommended by his team is 5–6 weeks of chemoradiotherapy, followed by 6 months of maintenance chemotherapy.
How did you balance the possibility of more time against preserving the person’s ability to live that time as they wanted?
Thank you for reading, any experiences or practical advice would mean a lot.
I just wanted to share bit of our journey. I know I was scrambling for information when she was first diagnosed at 40 years old in December of 2019, and I remember being terrified and scouring the internet for months. My wife was MGMT methylation-positive, IDH wildtype. Over the years she had 5 or 6 recurrences. Total of 4 craniotomies, 2 clinical trials, 2 radiation regimens. She took Temodar for the initial SoC for around 8 months. After that she took an NTRK inhibitor (larotrectinib) for a super rare gene mutation that is present in a very small number of gliomas. She took a metronomic dosage of Temodar again starting in 2024 that kept everything in check for around 1.5 years. She lost some peripheral vision and had a lot of mobility issues that last couple years but she always kept going. Not a single impact to her cognition right up until the last month in hospice. I am so grateful to her doctors and all the people that helped her last so long, to have the chance to get to know her kids and for them get to know their mom before she left us. Melissa never gave up and her glass was always half full. I know it's easier said than done, but if you are in Melissa's shoes or you are a caretaker for a Melissa of your own. . .Don't give up. Keep on living as best you can. Don't let your cancer define you. Don't let it change who you are.
Very odd thing, but I wanted to share because I’m curious what you all think. My husband has had a “tic” since he was about 5 or 6 years old. He would quickly nod his head “yes” three times in a row, especially when he was nervous or in an uncomfortable situation. Fast-forward to age 30, when he had surgery to remove a medulloblastoma. After the surgery, the tic completely disappeared. 😳
How weird is that?!
It makes me wonder, could his tumor somehow have been affecting the part of his brain or a nerve involved in that movement all those years? Or is it just a coincidence? His brain surgeon believes the medulloblastoma itself had only been there for about two years. Medulloblastoma is an embryonal tumor.
So I’m wondering if there could be any connection between the two, what do y’all think?
Hello, everyone.
My sister was recently diagnosed with a grade 3 oligodendroglioma. She has already had surgery to remove the tumor, and she is now about to start chemotherapy and radiation therapy.
However, my mom is really worried about the potential long-term effects of radiation therapy on my sister’s brain. We have heard that, in some cases, radiation can cause cognitive decline over time and may even affect a person’s ability to work.
Because of this, we are currently looking into other treatment options, including Voranigo (vorasidenib).
If you or someone you know has had radiation therapy for oligodendroglioma, I would really appreciate hearing about your experience.
How did radiation therapy affect you in the short term and long term? Were there any cognitive or other side effects? And if you have experience with Voranigo, how has that been?
I’m sorry if I’m asking something that may seem obvious. We are still learning about all of this, and any experiences or advice would mean a lot to us.
Thank you so much.
Hi everyone. I’m currently a 23-year-old male who recently graduated from university after being diagnosed at 22 with an extremely rare brain tumor called high-grade glioma with pleomorphic and pseudopapillary features (HPAP). Because this tumor is so rare and newly recognized, I wanted to share my story to bring some attention to it and hopefully hear from others who have lived with gliomas long-term.
(I have questions at the bottom, if you're not too interested in my long history but still have experience with gliomas. Please feel free to scroll down to where my question section is and answer freely -- thank you!)
Before February 2025, I was an active, healthy 22-year-old. I was studying at university, going to the gym almost every day, traveling, and doing pretty much everything you would consider normal for someone my age. That changed in mid-February when, shortly after finishing an interview for an internship, I suddenly felt one of the worst pains I had ever experienced on the right side of my head. I described it as feeling like a metal pole had pierced through my skull. I also lost coordination and spatial awareness on the left side of my body and started bumping into things around my apartment. I wasn’t sure what was happening, so I slept on it and felt mostly better the next day, but my parents, who were on vacation at the time, insisted that I go to the hospital. I reluctantly called an ambulance from campus outside my main academic hall—but only after going to class first because, apparently, academics still took priority while my brain was bleeding.
At the hospital, CT and MRI scans showed a brain hemorrhage associated with a right posterior parietal lesion (an abnormal area in the right rear portion of my brain with bleeding around it). Doctors couldn’t determine what had caused the bleed. Possibilities included an AVM (an abnormal connection between arteries and veins), cavernous malformation, tumor, or another vascular abnormality. Since there was no immediate danger and the blood products made the underlying lesion difficult to see clearly, the recommendation was to wait and repeat the imaging. About two months later, in April 2025, another MRI showed the lesion was essentially unchanged in size but easier to visualize as the blood resolved. There was no significant enhancement or surrounding edema. Doctors still had no idea what it was, and one possibility was a cavernous malformation that had bled during a period when I was under significant stress and using a lot of stimulants like caffeine and Adderall. Since the imaging was inconclusive and I had no ongoing symptoms, we continued watching it.
Then came June 2025. I was attending orientation for the same internship I had been interviewing for when the original bleed happened—apparently this company and my brain were not getting along. After the first day of orientation, I returned to my hotel room and began feeling the same left-sided wobbliness and altered perception I had experienced during the hemorrhage. I knew something was wrong. I managed to sit on my bed, call 911, tell the dispatcher my hotel and room number, and then started seeing flashing lights before falling to the floor. I had a seizure, which became the second major neurological event associated with the lesion. Another MRI now described a primarily cystic right parietal mass. Most of it contained complex cystic fluid, while along the posterior-medial portion there was a smaller solid soft-tissue component showing mild patchy enhancement and imaging changes corresponding to calcification on CT. In simpler terms, most of the lesion was cystic, with a smaller solid tumor-like component along one side. There still didn’t appear to be dramatic growth compared with April, although measuring the cystic portion complicated the comparison. At that point, surgery became the clear next step.
In July 2025, I underwent a right parietal/parieto-occipital craniotomy, and my neurosurgeon achieved a gross-total resection (GTR), meaning all visible tumor was removed. Before surgery, because the lesion was well circumscribed and had shown very little obvious growth over several months, some of my doctors thought it could potentially be a relatively low-grade tumor, possibly even around Grade 1. Then the pathology came back, and things became much more confusing. Initially there was concern for glioblastoma because the tumor was IDH-wildtype and H3-wildtype, and one early report raised concern for EGFR amplification. However, two additional pathology/molecular evaluations did not confirm EGFR amplification. Further testing showed no TERT promoter mutation, no classic +7/−10 glioblastoma-type copy-number signature, no CDKN2A/B homozygous deletion, no microvascular proliferation, no necrosis, and TP53/p53 was wild-type. Despite lacking many of those classic high-grade features, the tumor had high mitotic activity and an elevated Ki-67 index (both indicate that a significant proportion of the tumor cells were actively dividing), as well as a pathogenic RB1 alteration and a PTEN alteration reported at relatively low allelic frequency. So my doctors were calling it high-grade because of its proliferative activity, while at the same time many of the classical high-grade features were absent. It was also well circumscribed rather than obviously diffuse/infiltrative and had shown little radiographic growth for roughly six months before surgery. This created some very conflicting opinions, even among doctors at major brain tumor centers.
It wasn’t until the end of August 2025 that additional testing through the NIH, including DNA methylation profiling (a molecular test that identifies tumors based on patterns of gene regulation), finally gave us an answer: high-grade glioma with pleomorphic and pseudopapillary features (HPAP), with a methylation classifier confidence of approximately 0.99. After about seven months of uncertainty, a brain bleed, a seizure, surgery, multiple pathology reviews, and not knowing exactly what had been growing inside my head, we finally had a name for it. HPAP is an extremely rare and newly recognized glioma, with only a very small number of cases described in the medical literature. Newer research has even proposed dropping the “high-grade” wording and calling it glioma with pleomorphic and pseudopapillary features (GPAP), with the idea that some of these tumors may behave more like an intermediate-grade glioma. Because I had a gross-total resection and because of the unusual biology of the tumor, my doctors and I decided not to immediately pursue radiation or chemotherapy and instead continued close MRI surveillance.
I’ve had MRIs approximately every three months since surgery, and things initially looked good. However, my most recent MRI in August 2026, a little over a year after surgery, showed small nodular FLAIR-hyperintense areas along the resection cavity (areas that appear brighter on a particular MRI sequence and can represent abnormal tissue, gliosis/scarring, or tumor). Importantly, these areas are non-enhancing, do not show restricted diffusion, do not show convincing increased cerebral blood volume on perfusion imaging, do not show significant choline elevation on MR spectroscopy, and have no lipid or lactate peak. The radiologist did not definitively call this recurrence. The report said the abnormalities were not significantly changed from my June 2026 MRI but had slowly increased when compared with scans dating back to January 2026, and recommended continued follow-up imaging. My neuro-oncologist, however, is concerned that this could represent a very slowly growing recurrence. Based on the tumor’s overall behavior, my neurosurgeon has described it as behaving more like an intermediate Grade 2–3 glioma, possibly somewhere along that spectrum rather than like a conventional rapidly progressive Grade 4 glioma. At this point, some of my doctors are concerned enough about recurrence that radiation may be my next treatment. The abnormality is currently so small that my neurosurgeon does not favor another operation because there is a risk of not being able to reliably identify and remove something that tiny.
I honestly don’t know where this long road is taking me or where it ends. I wanted to share my story because my diagnosis is extraordinarily rare (I am 1 of maybe 60 confirmed cases) and because, at the end of the day, this is still a glioma and I’m dealing with many of the same questions and fears as everyone else in this community.
Question Section:
Are there any long-term survivors here—10, 15, 20+ years—after being diagnosed with a Grade 2, 3, or even Grade 4 glioma? Have any of you had a recurrence and then gone on to have many more years of stable disease? If you received radiation, was it proton or photon radiation? How did you handle treatment, what short- and long-term effects did you experience, and how do you feel about your long-term prognosis now?
I’m sitting here writing this after work at 23 years old, still kind of mind-blown by where my life has taken me. Not long ago I was mainly worrying about university, internships, going to the gym, traveling, and what I wanted to do after graduation. Now I know way more than I ever wanted to know about methylation profiling, Ki-67, perfusion, spectroscopy, and FLAIR hyperintensity. I don’t know what the future holds. I hope I make it well beyond 45, and I hope I have decades of life ahead of me. I hope everyone reading this does too. To everyone dealing with a brain tumor—whether you’re newly diagnosed, years into treatment, stable, dealing with recurrence, or supporting someone you love—I wish you the absolute best. Go live, go conquer, and accomplish everything you’re capable of. Thank you for reading my very long story.
I am writing this review with a heavy heart, after losing my mother following treatment at this hospital. I want to share our experience honestly so other families can make an informed decision.
My mother was diagnosed with a CPA meningioma (3.5 cm). Before this, she was completely fit and active — talking, laughing, living a normal life. We were told by Dr. S.N. Madhariya that without surgery she would not survive more than 6 months, and that surgery carried a risk of coma. We were also told that a specialist team from Mumbai would join for the craniotomy, for which we paid an additional amount to the staff. On the day of surgery, no team from Mumbai was present — the entire procedure, which lasted 8-9 hours, was performed by ramkrishna doctors including Dr. Madhariya.
After surgery, my mother regained consciousness within 24 hours and recognized all of us. However, she had visible difficulty swallowing and a persistent cough. We repeatedly requested the ICU team to perform a tracheostomy early to protect her airway. This request was not acted on in time. The cough progressed to her lungs and she developed pneumonia. When a tracheostomy was finally attempted, it failed, and a longer tube had to be ordered — this process took around 10 days in total. During this time, she developed a CSF leak and subsequently meningitis, which required a second surgery to correct.
Following this, her condition deteriorated significantly — her blood pressure dropped and she remained in the ICU for two and a half months. Despite everything, we lost her.
Throughout her ICU stay, we found the nursing and ICU staff support lacking. I personally witnessed staff being casual in the ICU environment, including handling patients without gloves. When we requested a transfer to another facility as her condition worsened, this was not approved.
The total cost of treatment came to approximately 38 lakh rupees. Despite the cost and the assurances given to us before surgery, we could not save her.
I am sharing this so other families going in for a craniotomy or similar major neurosurgery are fully aware of what to ask about in advance:
Confirm in writing who will actually be performing the surgery, especially if you're told outside specialists will be involved.
Ask about the hospital's post-operative ICU protocols, especially for airway management and tracheostomy timelines.
Understand the infrastructure and staffing available for post-surgical complications, not just the surgery itself.
Don't hesitate to push hard and early for a second opinion or transfer if you're not satisfied with post-op care.
My mother was my role model. She went into this surgery healthy, hopeful, and full of life. I would not want another family to go through what we did without knowing what questions to ask first.
Hi all,
Does anyone here suffer from gastrointestinal symptoms as a result of this tumor? Symptoms for us started a few months prior to diagnosis & are unrelated to surgery, treatment or medication.
Thank you all
has anybody been prescribed this as an add on to their other medication?
i've had .5 added
Any survivors? I barely see any posts 😨
Does anyone know how to make it cheaper? With my insurance it is still $1049. Being a teacher that amount is getting out of hand.
I had a craniotomy to remove a large right frontal lobe meningioma about 2 weeks ago. By post-op day 3, I felt amazing and seemed to have near complete resolution of most of my pre-op symptoms. Although, by post-op day 5, I did feel more headaches and fatigue. I got the green light to take some Motrin by day 7 for the headaches. I may have overexerted myself a bit or wasn’t elevated enough while sleeping and developed a Pseudomeningocele by my two week wound check appointment, and began to have some return of pre-op symptoms. Has anyone else experienced this type of back-and-forth during their recovery?
Hi I have a Left frontobasal meningioma, and I’m now about 3 months after craniotomy with complete removal, Also I’m undergoing RT and 20 out of 30 radiation sessions done till now.
Yesterday around my surgical part- left temple, cheek, eyelid- became swollen like bee sting or bad allergic reaction. I’m not allergic to anything and had no other symptoms so I just put some ice pack on it and it came back normal
And today after working out like walking a bit and light weights, same part got swollen again. After quick shower it became a bit better now
I can’t figure it out what caused it. Has anyone experienced those symptoms and figured out reasons?
Hello! My 32 year old sister was recently diagnosed with a grade 2 IDH- Mutant astrocytoma on her brainstem in the medulla, pons, and upper cervical spine. She had a shunt put in. It’s inoperable. She is on her final week of radiation and TMZ. She will have 4 weeks off of TMZ and begin again. Does anyone have or know of a similar diagnosis?
Hey hey,
New here, just joined Reddit as it was coming up a lot with answers to questions. Lovely to meet you all.
Diagnosed in march after brain surgery and then did radio and now just finishing my first round of chemo. 3 days pill free and still tired all the time :s
So far limited symptoms but don’t have many people to chat to about it in my life.
I’m 34, from London uk
So I guess that’s it, hi and nice to meet you.
Hello everyone,
I’m writing this with a lot of hope, desperation and determination on behalf of my sister.
She has been diagnosed with Glioblastoma with mesenchymal metaplasia (Gliosarcoma), CNS WHO Grade 4. She underwent surgery/biopsy and is currently undergoing the standard 6-week course of radiotherapy, 5 days a week, along with Axittem (temozolomide).
We understand how serious this diagnosis is. At the same time, we are not willing to simply accept that there are no options beyond the standard treatment.
We are actively researching clinical trials, immunotherapy, vaccines, CAR-T/T-cell therapies, targeted treatments, molecularly guided treatments and other promising approaches that could potentially be considered after or alongside standard therapy.
Her biopsy sample has also been sent for NGS/molecular profiling, because we want to understand whether there are any actionable mutations or biomarkers that could open additional treatment possibilities.
We are particularly looking for people who have been through something similar.
We would be incredibly grateful for your experiences:
* Has anyone here been diagnosed with GBM/gliosarcoma and remained stable or recovered significantly?
* What treatments did you receive after radiation and temozolomide?
* Did anyone pursue immunotherapy, cancer vaccines, CAR-T/T-cell therapy or a clinical trial?
* Has anyone accessed treatment in the US, Europe, China, India or elsewhere that made a meaningful difference?
* Did molecular/NGS testing actually lead to a different treatment?
* Are there particular GBM specialists, hospitals or clinical trials that you believe we should contact?
* If you or someone you know has had a similar diagnosis and is doing well today, we would genuinely love to hear your story and, if comfortable, connect privately.
We are not looking for false hope or miracle cures. We understand that GBM is extremely difficult to treat.
What we are looking for is information, experience and possibilities.
There are so many treatments being investigated, and sometimes finding the right trial or specialist depends on knowing where to look and who to contact.
If you have been through this journey, please tell us what you wish you had known at the beginning.
If there is something you would do differently, a doctor you would contact, a trial you would investigate, or a treatment you believe was worth pursuing, please share it.
We are prepared to travel anywhere and explore every scientifically credible option available to her.
Thank you to everyone who takes the time to read this and share their experience. Even one useful lead could make an enormous difference to our family.
This is true horror. He started his 2nd tier treatments this week and he has turned into a stranger to me. He won't talk to me, barely acknowledges me, I've asked what I've done and I get a very quick, nothing, or forget about it.
He literally said he was done having any conversation with me and proceeded to say he's just sitting here "wasting the time away" in the dark silence of the den.
He's now asleep on the sofa. I doubt he will come to bed tonight. I pray he's just mad at me. I want my man back!
В мае была операция , удалено 80-90 % опухоли размером 7.5 на 5.5 см. Потом была лучевая 30 процедур 60 гр. плюс темозоломид 160 мг каждый день. Через две недели после окончания лучевой сделано МРТ . Вроде неплохое , но напрягает что по контуру резекции есть накопление контраста , но кровотока в области нет . Что скажите ?
Клинический Основной
Астроцитома (WHO Grade 3, IDH-мутантная) теменной доли левого полушария головного мозга. Микрохирургическое удаление больших размеров новообразования теменной доли левого полушария головного мозга с применением нейрофизиологического мониторинга от 21.05.2026 г. Стереотаксическая радиотерапия СОД=60 Гр за 30 фракций с одновременным приемом Темозоломида 160 мг/сут 22.06.2026-31.07.2026 г. (C71.3); IV стадия;
Описание
04.0723T
На МР-томограммах головного мозга, выполненных в режимах Т2, T2-FLAIR, DWI, Т1 и FSPGR до и после в/в введения контрастного препарата в левой теменной доле парасагиттально сохраняется послеоперационная ликворная полость, распространяющаяся на левые отделы валика мозолистого тела, окружённая зоной перифокального гиперинтенсивного МР-сигнала на Т2 и T2-FLAIR. Масс-эффект отсутствует. Других изменений МР-сигнала в веществе мозга не определяется. Эпидурально на уровне оперативного доступа скопление жидкостного содержимого (изогипер- на Т2 и
FLAIR, изо- на Т1) толщиной слоя до 6 мм.
Субарахноидальное пространство в конвекситальных отделах выражено неравномерно, не расширено.
Желудочковая система не расширена, боковые желудочки асимметричны (D<S), задний рог левого бокового желудочка подтянут к зоне послеоперационных изменений.
Хиазмально-селлярная и пинеальная области не изменены.
Срединные структуры не смещены.
Внутренние слуховые проходы симметричны, не расширены.
Миндалины мозжечка расположены выше уровня большого затылочного отверстия.
Пневматизация придаточных пазух носа, ячеек сосцевидных отростков и пирамид височных костей не нарушена.
В режиме DWI патологического повышения МР-сигнала в веществе головного мозга не выявлено.
При проведении ASL-перифузии в области вышеописанного образования признаков повышения кровотока не отмечается.
При внутривенном введении контрастного препарат отмечается его накопление по контуру резекционного дефекта, оболочками в зоне хирургического доступа (п/о реакция). Иных участков патологического накопления не определяется.;
Заключение
Состояние после комбинированного лечения диффузной астроцитомы (grade 3) левой теменной доли.
Hi all,
Does anyone have any tips on helping to improve concentrating / focus?
My family member is unable to concentrate on anything and it's severely impacting their quality of life. We're only 1 month post op, however we really do need to improve their quality of life.
Thank you all