I am now one month post-craniotomy, and the testing came back. Grade 2 Astrocytoma. I had a full resection (which Surgeon says is the optimal treatment) which was successful, although we all know that you can’t guarantee to remove 100% of the cells, so I have a lifetime of regular MRIs to look forward to.

Surgeon is pleased with the diagnosis, no further treatment at this stage, and I am so relieved it was operable.

Still on keppra, because temporal lobe tumours/surgery have a higher seizure risk. Which sucks because the keppra rage is so very real. Hopefully can discontinue in another month or so.

I do however have a small nasal drip, which might be CSF. So that’s fun. I have a CT scan coming up for further investigation, and am trying to get a sample large enough to test. I don’t love the idea of having another op to find and seal that leak!

Also, my jaw still hurts if I spend too much time talking, or try to open my mouth too wide. Stupid jaw muscles running over the craniotomy site.

Thinking of going back to work the week after next, at least part-time.

I had a large tumor that has effected my left side of my body. The resection of pulled out 90% but my left hand is still having a tough time with working correctly. I am above ground with my family but it’s still a pain dropping everything in that hand. Any words of encouragement m?

I had a craniotomy (subtotal resection) back in April. I have super sensitive skin-had rashes from tape and adhesives in the hospital, but those went away quickly.

Ever since then, I've had a super itchy nose (surgeon said it's nerve related) and have had constant red patches near my eyes. I've also twice developed an itchy rash all over my body. Has anyone else had this after surgery? I haven't used anything different-makeup, soap, etc

Exciting Announcement:

Finally pregnant! It’s a Girl! Yay!

Ladies freeze your eggs before treatments it is so worth it!

I’m finally pregnant after wanting to be for 9 years! It was just one trauma after another for awhile. When my hubby and I first wanted a bab, my sister tragically died by suicide and I got PTSD because I found her with my mom and was in no healthy mental state to take care of a baby. Then I got brain cancer after that, and obviously wasn’t healthy then. Did IVF before treatments, and the 1st one didn’t implant and I was devastated because we only had 2 more chances (2 embryos left) and my husband didn’t want to adopt for silly reasons, so I was so devastated and depressed. Then I started doing my prayers and devotion everyday. Had two churches and family and friends pray for me, then I started having dreams from God and Jesus that I was pregnant and then not long after I had dreams of holding a baby girl!

Pregnant at 35! Been in remission for 1-2 years now. Left hand is still screwed up so I’m praying I can hold the baby safely and that the baby will make it through delivery.

Thank you Jesus! God is good l!

Despite all my recent pessimistic posts, I'm finally starting to lean toward the treatment side of the aisle, though perhaps in a unexpected way. Thanks to everyone here for contributing to the shift in my opinion.

My new preferred plan is debulking + radiotherapy, and also slam in some Vora if I can get it somehow. I have absolutely no desire to do TMZ after seeing the gained survival benefit, along with its potential risks. Compared to the massive OS gains of RT, it is a trivial gain with a lot of risk and qol drop. I'm also especially determined not to do anything that could harm my fertility.

Anyway, depending on the grade, I'd say there's a very real chance of seeing the next 10 years through if I go ahead with this. Even if its grade 3 now, still a reasonable chance. Although I am still worried about the deficits, it doesn't seem so bad when the gains could be this high. I'd better rebook that appointment with the radiation oncologist.

Edit: I found the PBS page for vorasidenib. Assuming the outcome shows an approval, I'll probably be able to access vora for a reasonable price some time mid 2026.

I'm also thinking ahead into the future, that if/when my tumor recurs again, I'll go in for more radiation - provided I tolerated it well the first time. The tumors generally remain responsive in subsequent RT treatments, not really that much it can do to adapt to radiation-induced death.

Hi all! I’m currently on cycle 3 of 5/23 TMZ. Having a really rough time. Just took dose 3 last night. Been sick the last two days, can’t keep anything down. I’m just vomiting bile at this point. I anticipate it only getting worse since I have no food at all in my system. I’m not sure if we have any Drs in this group. I meant to ask my neuroncoloigist and just didn’t email her in time. I’m considering delaying my TMZ dose tonight and pushing it back until tomorrow. I just need some relief and to be able to keep something in my system. Any thoughts? What helps you with the nausea?

My mom was just diagnosed with brain cancer and I just went and got her to my home. Rt now she will not sleep. Is this normal? Even with her pain meds.

It's been 24 days and counting since my Craniotomy, (right frontal meningioma) my head has a bit of a lump and of course I feel all the fluid inside. I find myself poking at it and feeling it often, it's just so weird! It feels like a water balloon! Nurse practitioner says it's just Serosanguineous fluid that should reabsorb into the brain but when might this happen? Is there anything I can do to speed that process up?

Does anyone here know they have false memories? How can you tell? And how do you navigate life/relationships if you cannot trust your own memory?

I have frontal lobe damage. I had a neuropsych evaluation and I know there is damage to my executive functions and working memory, but it didn't mention long term memory specifically. My husband and I frequently "remember things differently" and it causes fights. However, he also frequently "bends the truth" when he feels confronted or attacked. I have no idea how to navigate all of this and feel like I can't trust anyone, even myself.

F 35, Astrocytoma grade 4, diagnosed October 2023, inoperable. Was told on diagnosis "expectancy is around 2 years". Kept positive. Fuck that. I'll be one of those 5% or whatever it is that exceeds that time frame.

I've been through radiation+TMZ 34 rounds, monotherapy TMZ for 6 months, Optune TTF for about 1 year, Lomustine 4 rounds.

Had tumour regression in April 2024 after getting on monotherapy and Optune in February, hell yes. Kept on pushing. Wrecked my scalp because of the Optune but kept on pushing, what's a couple of lacerations in the long run?

Maybe a little bit of regression again in July 2024..? Maybe? Anyhow the TMZ monotherapy was finished by then, finally.

Stable scans for the rest of the year.

Come 2025, first scan in January. Progression. FUCK. It'll be okay, it was just a teeny tiny bit, it can still go back again.

Early April, scan. Progression.

Stopped the Optune in May 2025 because of the progress. Got on Lomustine at around the same time, felt like shit on it. Thought, "hey maybe they work better then!"(honestly, what kind of idea was that?) Silly.

Scan in July 2025. Clear progress. We're talking, it doubled in size since April. From around 1,5 cm to 3 cm. No more Lomustine. No more available treatments. Aha, I said! I want a second opinion! They send it, it comes back.

No. More. Available. Treatments. Sorry.

And here we are. I've been connected to a palliative team in my city and they'll come visit us for a first meet-up on the 2nd of September.

Now I'm just dying. Literally. Slowly. My children will grow up without a mother. I'll never get to grow old with my husband. Life is fucking unfair.

To die will be an awfully big adventure, I guess.

Keep fighting everyone. ❤️

we all need to say and hear it every once in a while

Hello everyone,

I'm joining this sub reddit having experienced so much support for my own health issues on other subs. Hoping you might be able to help me and my husband make sense of what we've been told and work out how best to support his dad.

FiL had a melanoma and had an op to remove it from his back, plus a lymph node biopsy, a few months ago. They also carried out a whole body MRI recently to check the melanoma hadn't spread. Yesterday he went in to see a neuro oncologist after they spotted something on his brain scan. Bearing in mind he was understandabky shook up (and he doesn't hear very well), he told us it was brain cancer and said the doc called it a melanoma but also seemed convinced it wasn't related to his skin cancer. I can't make sense of this. Everything I read mentions a brain melanoma as a secondary cancer originating from the skin cancer. Can you tell me if this is the case, or if there is a melanoma that can just pop up in the brain independently?

FiL is a tough cookie and is currently telling us he needs no help (despite being told not to drive for 12 months, which would require him getting taxis to and from hospital appointments). The docs are saying it can't be operated on, so he's in to have a mask made today with a view to starting radiotherapy in about 10 days' time. Chemo will come after that. How will this effect him? I can't imagine wanting to be in a taxi when I've been through that, but I have no idea. What should we expect? How can we help him and MiL, especially when he's determined not to be helped?

Husband has a sister with young kids who lives just around the corner, whereas we're an hours' drive away. But I don't want SiL to exhaust herself doing everything, which I know she'll try and do because that's how she copes.

Thoughts appreciated.

Before the surgery, the doctor said that the astrocytoma had all the features of grade 2. Histology increased the degree to grade 3. They found up to 5 mitoses in 10 fields of view and Ki67 up to 20%. I assume that this is a lot even for grade 3, and the tumor is very aggressive. The tumor consists of gemistocytes. The good news is that the tumor surgeon did a complete resection and the MRI results show no remnants. Further treatment involves radiation and chemotherapy. But I am very upset about Ki67. Can we expect long-term remission with such indicators?

Apologies in advance, this is just a rant. The neurosurgeon I just spoke to, from a well-known center in my country, just told me that performing a biopsy on an inoperable tumor is pointless. According to him, knowing the histotype is useless because there are no targeted therapies that can change the prognosis (not even the newest ones). He almost scolded me because I was skeptical about it. And this opinion also costed me money

He redditors, i was recently diagnosed with a braintumor around 3x5 cm on the right hand side of my brain. I feel very frustrated that i can't get any answers from the doctors about my survival rate yet or worse risk of getting paralyzed on my left side of the body. i understand that it takes time and they have to wait for the results from the biopsi that was taken last friday. But can anyone give me something? I'm 28 years old and feel free to ask any questions, and i will try to answer as best as i can.

EDIT: Not my scan but looks awfully close to my pictures. stupid me didn't take a picture of the scan. maybe i can find it somewhere in my online journals

My surgeon confirmed to me that we’re going for an awake craniotomy, which terrifies me.

I know it’s the better approach but I’m just so terrified of being tied to a table and being awake with my head open.

What is the feeling during the awake phase? What are the general thoughts going through your head? Is there a full realisation of the situation or do the meds help pass this phase relatively quickly while being somewhat relaxed and maybe light? In general - how does this phase go?

Will appreciate all of your experiences! I understand it’s personal so can differ and my surgeon was also very calm and told me they’ve done hundreds of those to they know the drill, but I have done none of those so there are a bunch of thoughts and feelings I’m fighting with here.

I had emergency surgery for a brain tumor in the posterior fossa, which turned out to be a hemangioblastoma. I’m wondering if anyone here has had a similar experience and what kind of symptoms you noticed a few months after surgery?

For me, I sometimes get: ringing or buzzing in the ears when I read or concentrate for a longer time, sharp or stabbing pain in the back of my head (near where the tumor was) if I don’t take breaks, headaches that improve when I rest, occasional neck stiffness and fatigue during the day.

Would love to hear if this is something others have experienced too, and how you managed it.

Someone has focal seizures but no other symptoms yet. Surgery is coming shortly bc a lesion was identified on mri and confirmed as the source with eeg test. In the meantime while back home, what should we be on the lookout for? Headaches? Vision? Balance? Anything else?
If any of those appear, does it warrant a rush to the hospital before the surgery?

In followup to this post. I am running out of time to finalize on my decision, so thought I'd seek a little more in the way of opinions, and comparisons to other people's experiences.

In the image below, you can see the main problem - the whispy line of brightness tracking further down my right insular, right beside the putamen. its hard to really define a discrete mass on FLAIR - though on T2 and ADC you can see more of a fill-in effect along that part of the insular, which I assume is edema caused by the gradual infiltration.

Something similar is happening on the opposite side of the cavity, but I don't really care about that spot as much. If nothing else, it might help signial that tumor biology on both sides has not changed too much. I think the more-distant spread along the insular is mainly due to path-of-least-resistance which O2 tends to prefer.

Its hard to really say how fast this is progressing, since it is ill-defined - docs would not even guess whether it was still grade 2, but did agree that it is spreading "slowly". This scan is 4.5 years post-op from the O2 GTR.

Any other single brainos out there figuring out how to date?

Free Brain Tumor Webinar: Integrative Medicine for Patients with Primary Brain Tumors

Hi everyone, The Musella Foundation is hosting a free webinar as part of our Brain Tumor Webinar Series:

🗓 Wednesday, August 27 ⏰ 5:30pm PT / 8:30pm ET 🎤 Speaker: Dr. Nicholas Butowski (UCSF Health)

The session will focus on how integrative medicine can support people with primary brain tumors alongside standard treatments.

👉 No registration required — just join here: virtualtrials.org/webinar

I thought this might be helpful to patients, families, and caregivers looking for more options.