How long did it take you to recover from your first craniotomy? Just got done with my first one and this is really rough! Just curious to see how other people handled it? What is the average recovery time?

My mother 81 GBM 4 will be done with radiation/TMZ protocol in a few weeks. She would consider the Optune Cap. Could anyone who has used it share your experience? Was it effective? Was it too much of a pain?

Wanted to know if anyone has faced something like this and what it can mean. I was diagnosed with AA3 in June 2023, had surgery followed by adjuvant proton radiation and chemo till August. Since then it's been 5 days/months of chemo for a planned 12 cycles. I had an MRI in late Feb 2024 which showed some growth, which was confirmed again by an MRI Spectroscopy this month (May 2024). We are now talking to a neurosurgeon about another surgery. I was told by my oncologist that the time for relapse is usually ~3 years but this seems to have come back in <1 year.

I'm meeting my doctor next week, but wanted to hear about your experiences. Has this happened to anyone here? I'm still on chemo cycles and have barely any side-effects. No symptoms either. Could this mean that the grade for my cancer has increased?

My wife (45) has a glio that she’s beaten for three years, and now has Leptomeningeal disease where it spreads to the brain/spinal fluid. I’m starting to see major signs of short term memory loss. I’d list some examples but there’s too many. What are y’all doing if anything for memory? Exercises? Vitamins? Also my wife’s taste has changed big time! I think cause of the steroids but I’m not sure. She suddenly wants pepper on everything… and A LOT of it. And lots of spicy sauces which she never wanted before. And wants Mr pibb too lol. We were never soda drinkers. What are y’all noticing about taste changes?

Howdy all,

Back on April 14th I went into the ER and ended up having an emergency craniotomy to remove a 7cm tumor on my right temporal lobe, everything went off without a hitch and my bounce back has been great (months of being an anxious mess solved overnight, Im back to feeling bulletproof). News came down it was a spread of my stage 3c melanoma from back in 2022 so Im officially stage 4 and we started fielding treatment options.

Got a team together (The neurosurgeon who operated on me, an oncologist who specializes in melanoma, an ophthalmologist since this thing was squishing my optic nerve and a radio oncologist who specializes in gamma knife) and we hashed out a game plan, on the 23rd I go in for a round of Gamma knife to thoroughly make sure the void where the tumor was is cleared out and then start a regiment of opdivo+yervoy.

I really like my team and I'm super confident in their decisions but the more I read about gamma knife the more I'm kinda getting skeeved out. I've read some stories about some rough side effects people experienced and how this type of treatment usually isn't reccomended for people <40 (I'm 27) since the radiation can cause future growths.

Obviously the side effects are fringe cases and we wouldn't be considering this method if it wasn't serious so I'm going through with it but I really think it would help me calm my shit to hear some success stories, anyone have any experience with this?

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Hello all, my husband underwent surgeries radiation immunotherapies, hormonal agent Lutathera dotatate but nothing seems to be working. He has a very aggressive tumor which In genetic tumor profiling shows chromosomal segmental gains at 6q, 9q, and 19p/q and segmental losses at 1p, 6q, 7p, 8p, 13q, 14q, 19p, and 22q. My questions are -Anyone with similar tumor profiling tried any supplements that helped?

• Anyone tried fresh Cannabis leave juicing with results?

Anyone tried Drug Ademaciclib for similar tumor and got results?

Thanks for any help that anyone can provide

Is it possible to have an infiltrative cancerous glioma (GBM, in my case) with no external/visible tumor?

Cancer cells are always present, even after resection and radiation. But can the cancer continue to grow and infiltrate the brain without a visible tumor? If so, does it show up on an MRI? Is it possible to have symptoms or even die from GBM without an obvious tumor?

Had a craniotomy 2 years ago and just curious what, if any, vitamins you all take. Right now I’m taking a multivitamin but would love to hear what other supplements are helpful to you!

I have break through seizures which I take a fistful of pills for and sometimes they help sometimes they don't. My neurologist called me this morning and we are increasing the one pill that seemed to make a difference the first time it was increased and I asked if she ever recommended anyone try cbd oil or gummies in conjunction as I've heard cbd can really help. She told me she encouraged it and I'd be a perfect candidate due to my type of seizure just wonder if anyone else has tried and their results. Thanks in advance

Background: 2015 I was diagnosed with anaplastic astrocytoma grade 3. I underwent surgery, radiation, 12 months chemo. Tumor was stable until last year when a small nodule growth appeared. It was decided that surgery was necessary to remove and determine pathology. The thought was it would be the same tumor or advance to glioblastoma. Turns out I was misdiagnosed in 2015, and have what is closely aligned with a polycitic astrocytoma. It isn’t exactly that, it doesn’t actually fit into any known tumor category. My oncologist said she’s only seen this happen twice in her career. So that was good news. Fast forward to six months later, 3 months after my last scan, and there is a spot near the resection my neuro oncologist is slightly concerned about and wants me to come back in 2 months instead of 3. I also have a cyst, which is consistent with polycitic tumors but was the first I’ve heard about this. I know cysts aren’t necessarily concerning until they impact my day to day functioning, but it’s like wtf. I feel I keep getting knocked for 6. Bad news, then good news, then maybe bad news, and no one is exactly sure what this tumor is, which isn’t comforting. I don’t know what to feel, currently i feel deflated and frustrated. Im not sure what I’m looking for by posting this, I just wanted to have a little vent.

Hi, everyone!

I had a benign grade 1 astrocytoma in my amygdala and hypothalamus removed in May 2021. In September/October of last year, I began having absence seizures, leading me to be diagnosed with temporal lobe epilepsy. Recently, I have lost the ability to feel thirst, which seems to be a symptom of hypothalamic lesions. I had my craniotomy three years ago - why am I still developing new symptoms three years on? Has this happened to any of you guys?

Hi! I had immunotherapy treatments since March and had my last one in the middle of April. I’ve been incredibly fatigued since then; i still try to get outside or to the gym every day to keep my body moving. I’ll sleep from 10-12 hours at night. My friends have noticed how exhausted i have become. Is there any way to reduce this fatigue besides just waiting it out?

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My mom had surgery 4 or 5 years ago and gets brain twinges or “the heebyjeebys” as she calls it.. is there any sort of nerve treatment or anything she can do or it is what is basically?

She had a benign meningioma tumor removed by the way

Comment: Sections show a well-demarcated tumor with a nodular growth pattern composed of stellate cells with bland nuclei in a myxoid matrix, along with scattered collagen. There are also prominent hyalinized vessels and focal Verocay bodies. Mitotic figures are inconspicuous. There is no necrosis or definitive microvascular proliferation. Immunohistochemical stains performed at Beaumont and revi ewed at University of Michigan demonstrate that tumor cells are positive for SOX10 and S100 (strong, diffuse) and negative for Olig2, NeuN, and OCT3/4. Neurofilament is excluded. Tumor cells are negative for IDH1 R132H (mutant specific antibody). P53 is variably positive (approximately 30% of tumor cells).

My radiation oncologist mentioned some patients use devices like a smart watch that can monitor for a seizure and alert my husband if I have a seizure.

I spend most of my time with my husband but would like to have a bit more piece of mind that if I go out for a walk or something by myself, he could get a notification on his phone that I am having a seizure.

It looks like there are some apps for smart watches that do this. Anyone here have experience using one of these apps/devices? Or have any recommendations on a device to get?

i was 42 when I was diagnosed witha grade 4 Glioblastoma - I'm still here after radiation, avastin and 6 rounds of chemo pills. When ppl ask how I am, my answer is I'm surviving purely out of spite. if anyone wants to discuss feel free to hit me up.

Has anyone had an MRI result measuring growth in a tumor/suspected tumor, that turned out to just be a technical difference from having scans in different MRI machines?

I'm being monitored for a suspected low grade glioma - first scan in August showed a non-specific lesion, could be cancer, could be something harmless. Follow-up scans in October and December showed no changes. The scan a few days ago shows a slight enlargement of the FLAIR. This is consistent with low grade glioma, but the radiologist notes that "technical differences" between the different MRI machines could be contributing.

Has anyone else had a result where the enlargement just turned out to be something technical?

All of my MRIs have been in different machines. The radiologist report notes that the baseline scan was a 1.5 Tesla machine and the latest scan was 3.0 Tesla. Report also suggests that slice thickness from the MRI could be contributing.

This is all coming directly from the written report, so I assume there is some possibility the enlargement really is a technical. There's a pessimistic voice in my head that says the technical argument is plausible but only just barely. My neurooncologist wasn't available on the day of the scan to discuss. His NP said this could definitely go either way, but declined to make any kind of assessment of the odds. My regular neurologist (treating me for possible symptoms) said she's seen false scans results before but also declined to make even the roughest guess at the odds.

Next scan is July and on the oncologist's order I'm meeting in with a surgeon in two weeks "just in case" . I am going to ask a lot more questions then, but two weeks is a long time to wait and July is even longer. Just trying to figure out if the odds of a technical misread here are like, roughly one-in-a-million, one-in-hundred, 50/50 - ballpark!

I'm helping my boyfriend (49m) figure out his treatment options for his grade 4 astrocytoma.

It was a 9cm tumor 90% resected in January, and he's now undergoing 6 weeks of chemo (TMZ) and radiation, followed by up to another 6 months of TMZ He's coping well, all things considered.

So far, all of this has been done under the NHS, but we got a second opinion from a private neuro oncologist who laid out some extra treatments we might want to consider.

So far, we're under the understanding that our insurance will cover none of this, so cost will be a factor too:

Optune, £18k per month, slight chance we could get it covered. My boyfriend doesn't like the idea of this and the lifestyle changes required. The neuro-oncologist said it adds 4.9 months to GBM lifespan, but was unclear on what it does for an AA4. 4.9 months doesn't seem like a lot given the hassle of wearing it for years and years.

Combined chemo, adding Lomustine to the TMZ to the mix for the last 6 months.

CeGaT personalised cancer vaccine - £80k. The private neuro-oncologist suggested this might be better earlier on in the disease.

I was hoping Vorasidenib would be available later this year, but my understanding is that trials were primarily done with patients who hadn't undergone chemo/radiation, so it might be a long while before it's cleared for use in his case, even though his is IDH mutated.

I'm struggling to find out enough research on any of these options to help decide on which, if any, are the right ones to go for, and my boyfriend is too tired to even think about the health or financial impact of any of them. I'm terrified of making the wrong choice, as ultimately it's not my call, and it's a matter of his life and death, and his quality of life. I'd love to hear if anyone has any experiences with AA4s, with any of these treatments, or with managing the minefield of making treatment decisions for their loved ones 💙

Hi everyone,

Just thought I’d say hi and share my story.

My wife and I have been together 13 years. She’s the love of my life. We got married last year and she is currently 16 weeks pregnant. She had a seizure earlier today for the first time. we took her to the emergency room where she completed and mri and a ct scan. I’m currently in the emergency room waiting to her to complete her second mri. Haven’t been able to sleep or eat. She has surgery tomorrow to determine the specifics of the tumor.

Hoping to have some good vibes sent our way if you have any to spare.

Update 5/7: no surgery has been completed at this time. She had a second mri and the results were mixed. The doctors right now are ruling out an infection to the brain. So we’re awaiting blood test and spinal fluid test results.

So right after my surgery I missed my dose multiple times just from poor memory. Never had any seizure activity. Months down the line I missed 2 of the doses and the next morning before I could take the morning dose I had a partial/mini seizure just like before being put on the keppra. This morning I was in a rush to get out of the house so forgot again and didn’t remember once I got home. So later in the afternoon I had one and realized “oh sh*t I forgot again” the funny thing is I have a timer for my birth control and remember the birth control but somehow don’t always remember the keppra. Even though they’re in the same container I keep my meds in!!

Anyways what I wanted to ask was since I didn’t have them right after surgery after missing doses multiple times, then having one after missing two doses to having one after only missing one dose ; is it possible that this is a sign the tumor is growing ? I had an mri Thursday just awaiting the results. My neurosurgeon didn’t schedule me till 6 months from January and my neuro oncologist said that’s WAY too long. That I should be getting them every 2-3months since my surgery was 11/23 he was able to get about 95% of it out. The other 5% was wrapped around an artery🙃

(sorry for the complete run on sentences )

Anyone else have a supratotal resection done besides me? From what I've gathered it's kinda a rare deal. Cheers

Hi all,

I saw my neurosurgeon this week and he believes it’s a low grade glioma that has been growing very slowly since 2020. On the last scan there was brighter enhancement that was not there last year.

Unfortunately I have been scheduled to get brain surgery in a few months.

I have been getting weird light headedness, warmth and shortness of breath and such while doing simple physical tasks — could this be a symptom?

My neurosurgeon did say it’s in an area that can cause seizures however I do recall having weird aura experiences in the past.

What were your symptoms?

Hello everyone.

I have a question for experienced temozolomide users: I'm about to start temozolomide, and I wondered what time after taking it the nausea/vomiting (if any) would start? I have epilepsy pills to take twice a day, and I don't want to throw them up.

Thanks!

Hi, I had the following queries. Would be grateful if someone can please provide some insights. Does an astrocytoma:

1. directly grow as a grade three tumour or;
2. does it first start as a grade 1 and then progresses to grade 3?
3. is the prognosis for GBM IV and astrocytoma IV similiar?

Does anyone know the timeline of growth for 1) and 2) before the symptoms start manifesting (i.e seizures).

Thank you in advance.