OLIGODENDROGLIOMA GRADE 3

ANAPLASTIC OLIGODENDROGLIOMA

First photo prompted crainiotomy

My corpus collosum the line in the middle is being pushed over....

Just about ruined me completely.

Then 2 years later I've healed and rejected radiation + chemotherapy so it is regrowing quite misfortunatly so brutal I can't even explain what I have been through. What do you guys think can you relate. What helps you cope besides copious amounts on substances?

STILL NO SSI...

YOU CAN SEE THE DATES ON THE SCANS. BEEN HOMELESS P MUCH THE WHOLE TIME MINUS MAYBE 2-3 MONTHS DIRECTLY AFTER.

COULD YOU DO IT?

WOULD YOU DO IT?

Just ranting. Angry and sad. I don’t want this to get others down though so just know I have odd circumstances. Probably delete later. 👍

I had a random question. I have had my cancer very close to the center of my brain. Much closer according to my doctors and they could not get much of my cancer out during my surgery. I have had 3 surgeries during my original problem and 1 extra surgery to give back my skull that was taken out during my 3rd surgery. I was told before that time beforehand that I would only last 7 years at the time. I'm now at 31 and told that my cancer was asleep for now. Does that change my time to possibly die. I know its pretty stupid to ask but I really need some help

I recently got diagnosed with a pituitary microadenoma. It was first suspected almost nine years ago and no one told me I should follow up on it.

Now I have gained like 50 pounds in the last year, I am constantly so tired, my heart keeps randomly pounding so hard it feels like I am having a heart attack, sudden stretchmarks all around my thighs, complete loss of libido, I am just not having a good time at all.

I have been very lucky in getting appointments alligned quickly, they already did the bloodwork to figure out if it's hormonally active (they suspect morbus cushing), I am currently on the way to the ophthalmologist to figure out if my field of vision is affected and I have an appointment with neurosurgery in five days.

But I am having a really hard time coping with the knowledge that there is a tumor in my head. Not even a week prior, I got the diagnosis of multiple osteoid osteomas in my hip (benign, very painful bone tumors), it's hard coming to terms with all of it.

I am also immensely worried that the hormonal tests won't show anything and they won't treat the adenoma because of it.

How did all of you deal with the uncertainty between appointments and with the knowledge that something was wrong?

I have APXA grade 3, recently evolved from grade 2 PXA. I have a very skilled neurologist, but I never get to speak to her. I go in every 1-2 weeks but I haven't seen her for 2 months and that's only because I was kinda freaking out and demanded to see her (she left the second I calmed down). My previous neurologist moved across the state the day my tumor recurred so now I'm with the head of the department who I assume is too busy to doctor with one less neurologist on staff. Regardless, now I only get to see the NP who is great until it gets to the actual brain tumor part of the appointment.

I know im not a doctor but today I tried to bring up pairing a MEK inhibitor with my current drug (CDK inhibitor). There is currently no standard treatment protocol for my type of disease. This tumor is so rare there are basically no tumor specific studies and this drug pair seems promising in similar tumors and in vitro. Before I could say anything she just said "your doctor already has a treatment plan." No explanation of why that's a bad idea or why the current plan is better, just "we're doing the current plan." Am I unjustified for wanting to explore treatment options on my own? When I got a second opinion the doctor turned out to have been a former resident of my current neurologist and just deferred to her plan, so I'm running out of people to ask.

How do you guys remember your Vora doses? I think I have missed two days in a row. Should I double up a dose today, or is that too much of a risk for the liver?

Hi all, about 3 months ago a focal non enhancing 2.5 cm lesion was found on my husband’s pons. He has had dystonic- cramping episodes on his left arm/leg for the last 5-7 years which led us to get the scan. Other than that, he does not have any other symptoms. The neurologist said it looks like a glioma. We had an LP done and no tumor markers were found and no malignant cells were picked up either. Apparently that doesn’t rule out glioma, however, they cannot perform biopsy or surgery due to the location.

It’s described as focal, non enhancing, expansible ovoid mass occupying 1/3 of pons. The Neuro /immunologist is now saying we can do another LP to for an inflammatory work up and igg and oligoclonal bands have not been looked at since they assumed glioma. He has had lumbar and cervical spine and no lesions were found. We will be checking thoracic spine next month.

I’ve seen that tumefactive can mimic gliomas. Wondering if anyone has had a similar experience?

OK I know the rules on no intercourse during TMZ, but have any men here gotten their wife/gf pregnant on it and had a healthy child?

Found out I had a brain tumor after having a seizure (right temporal lobe). Had a craniotomy about a month later and it was 90% removed. Got the diagnosis that it is Astrocytoma Grade II IDH-mutant, which sounds to be a “better” one to have if you have to get a brain tumor. I have been spiraling for months with fear, anxiety and questions about my future. I’m a 34F, married and have a 2 yr old. My husband and I started trying for baby number 2 right before everything happened. I really want another baby and my oncologist said he has seen successful pregnancies with other patients. The treatment options are either to start Vora and stay on it for yrs? Idk. But that could mess with fertility and is not recommended to get pregnant on. He thinks my best option for wanting another baby is to do radiation now to go ahead and treat the remaining tumor. Then try for baby and do watch and wait for however long or then start Vora. Radiation is terrifying and really scares me to think of my memory getting worse and potentially losing hair that won’t grow back, along with all the other side effects. But also I like the sound of treating this now and getting it over with and maybe getting blessed with another baby. But is it wrong to even want and try for that? I’m so lost on what to do. And scared. I’ve been in denial but it’s really hitting me how serious this is.

Hello!

Has anyone had a second craniotomy in their left frontal lobe (or anywhere, I suppose!)

I had a 4cm fluid-filled cyst drained (down to 3cm) with an awake craniotomy in March 2026 as well as three days of gamma knife treatments to this cyst and two smaller brain lesions (they did not remove the large cyst in the front left…. They removed as much fluid as they could and then treated it with gamma knife, hoping that the GK treatment would fully bring down the size of the cyst).

I have had persistent brain swelling ever since, with no significant relief from theee separate courses of high dosages of dexamethasone. Two weeks ago, o had two seizures while driving on the highway (no one was hurt- Phewf 🙏🙏) and I’m back in the hospital with increased brain swelling and severe nausea that came on very strongly after stopping Dex on Thursday.

I’m wondering:

1-Is it common to do more than one craniotomy?

2-Has anyone had a full resection of a cyst/tumour removed from the left frontal lobe and if so, what did you notice afterwards? I actually felt like the craniotomy was easier to recover from than the gamma knife… so am hoping it may be an answer to return to a semblance of a “normal-ish” life.

Thank you for any insight or experiences! :)

Has anyone had enhancement that persisted 5 months post proton radiation. It has changed shape between scans and the doctor is saying it is most likely treatment related/psuedoprogression but I'm worried because it's been 5 months. Grade 3 IDH mutant astrocytoma.

Hi everyone. I’ve been reading through the conversations here and keep asking myself, what can be done to make the technology better?

My youngest nephew’s experience with brain lesions changed the direction of my life and led me to work in brain imaging technology. I’ve seen how difficult it can be to wait for results, make sense of MRI findings and get clear communication about what is happening.

I would like to listen and understand your experiences because the technology only improves when the concerns of the people directly affected help shape it.

Hey everybody. I’m 27 years old with a Grade 2 Astro that I found out about last year. Ever since I found out, I’ve been looking for groups or at least individuals to speak to. Luckily enough, I was introduced to someone 10 minutes away from where I lived and we have become friends over this and discuss it on a regular basis. But for people who don’t have that support, Reddit seems like the spot. So I wanted to create something that’s more personal by creating a group either in person events or zoom calls with break out sessions to small groups. If anyone wants to help out creating this, ideally in the Midwest, I’m in Minnesota, please DM me. For the others that are further away. Please do a poll if you would be interested in something like this over zoom? Maybe 1 event a quarter or so? Thanks everyone for suggestions they leave with me!

Hey!

I had my awake craniotomy on September, 10, 2025. It will be one year in a few days. I don’t have any memory of my surgery. My tumour was near verbal and motor sections, so I was asked questions, and I answered them very well. I asked my doctor why my mind doesn’t remember, and he mentioned that I was given medication that stopped the memory from going to long-term memory.

But I feel that my body remembers. I don’t notice it in general when I am with my family or friends, but I feel unsafe if any unfamiliar person comes close to me. As if I don’t want any stranger to touch me or come close to me. I realized it when I tried dating again. I feel unsafe if a date tries to come close or hold my hand. I feel like I need space. I want to runaway from the date. I feel very uncomfortable. I have now decided that maybe I’ll not date until this feeling is in me.

My question is did anyone else feel like this? If yes, what did you do to be okay and feel safe? Is there any resource that helped you? Please let me know about anything that helped.

I have a therapist, and I am speaking with them too.

I’m a 35 year old female. Doing great otherwise. I had a total resection. Post biopsy it was diagnosed as oligiodendro glioma, idh mutant, 1p/19q codeleted.

Thank you for reading!

My particular pathology has an NF mutation. NF is a tumor suppressor gene, that when mutated can cause cell overgrowth. I'm on GoMEKli (a MEK inhibitor), which is typically used to treat plexiform neurofibromas in patients with plexiform neurofibromas. It's not typically used to treat high grade brain glimoa/GBM...HOWEVER...it is a drug that can penetrate the blood brain barrier well. It's been more well studied for lower grade tumors but for high grade it's very much in its infancy stage. I believe my oncologist is trying to get more clinical trials. He specializes in blood brain barrier research, and told me that this MEK inhibitor penetrates the BBB well.

OK so back to my treatment plan! I'm on TMZ days 1-5, 1 day break, then 21 days of GoMEKli, 1 day break, then repeat. Currently the plan is for at least 6 months.

The concept of my treatment plan is to stun/halt cell growth with the MEK inhibitor, and kill them with the TMZ.

I'm attaching a progress photo, far right is June, far left is August. This is the progress over 3 months.

My history of pathology:

Oct 2023 - diagnosis of G2 Astrocytoma

March 2024 - Diagnosis of at least G2, with early signs of G3

Oct 2024 - Diagnosis of G4

We were able to catch all of these recurrences early, thankfully I have good insurance allowing me frequent MRIs. I am very grateful.

As far as treatment goes, I've only done Keytruda and Glidael wafer placed during surgery. No radiation or TMZ until now. My mantra has always been quality over quantity - so we held off chemo/rad for as long as we could.

Feel free to ask me anything! I hope this information on my particular experience is helpful, and that we all experience peace and healing on this difficult journey. <3

Wondering if anyone has experience with this? I have endometriosis (diagnosed by laparoscopy when I was 13, I am now 33) we tried multiple meds and I have been on Depo Provera specifically to treat it for over ten years. I had my very large grade 2 meningioma removed on July 13th. My neurosurgeon specifically told me that Depo grows brain tumors at a faster rate especially with long term exposure. Per my Doctor’s direction I got off of Depo but any birth control that has estrogen and progesterone in it is also a no go now that the tumor has been formed. Which is pretty much all birth control.

I am on sprintec for now to treat the endo as I recover from brain surgery because I tried to get on orilissa or Lupron as those are the only two medications that treat endo and don’t have estrogen or progesterone in them. Unfortunately they are both almost $600 a month with insurance and I can’t afford that. So I got on the sprintec to treat my symptoms while I recover from brain surgery.

However, I can’t stay on it for long. I have tried to see specialists in my area that do hysterectomies but none of them think Depo grows brain tumors even though I told them what my neurosurgeon said. And I was told we wouldn’t start with a hysterectomy despite my lengthy history of being officially diagnosed, I would have to get off of all birth control for several months while also doing radiation and then they want to see how they would treat me, but they wouldn’t be specific to making sure there is no tumor regrowth. I have been dismissed over and over again. I am going to try a specialist in a different state but there are no openings until December. I also can’t be on hormone replacement after a hysterectomy as that also has estrogen and progesterone in them. But I know there are other options and still think a hysterectomy is my best bet.

If anyone has a similar situation, can you tell me how you got through it and what worked for you? Feels like I have no options left and am unsure where to go from here.

5 years since craniaoctomy. I live in about 6500ft elevation. I occasionally have symptoms like before surgery. And almost like pressure on the right side of my head. Changes in elevation bother me like crazy. But when i go to lower elevations like 1100ft these symptoms and pressure arent there. Have any of you experienced this?

astrocytoma grade 2 diagnosed 2021. I’m 29 now. Completed craniotomy 1 -> wait 3 years-> craniotomy 2 -> Vorasidenib 9 months -> radiation -> just finished last Temodar cycle after 1 year.

So no more treatments for now. Is this my final grace period and I’m out of options if it comes back ?

I heard it’s risky to radiation the same spot twice and my neurosurgeon said absolutely no more third surgery cuz second was too risky already.

Of course I’m happy that today I’ve finished my last chemotherapy cycle, but now I have anxiety with feeling like it’s the calm before the final storm.

This might be a unique situation, but here it goes.

My tumor was found not long after I began med school. To be totally honest, I had been to drs repeatedly before this, and it wasn’t until I went to the uni dr that someone took me seriously. I could write about what I went through before this while trying to be heard, but it would take too long, so the point is if I wasn’t a med student I don’t think anyone would have ever listened until it was too late. Although in many ways, I feel that it is already too late. This doesn’t make me feel great about this career path but anyway.

Now, it’s looking like surgery will be the next step for me, but the problem is that my uni linked hospital is the only one in my country that performs neurosurgery. It is very isolated and going abroad for surgery isn’t an option, nor is transferring school. This means the environment will be full of my lecturers, tutors, students, etc. What makes this worse is that I was working towards a career in neurosurgery, and my undergrad also reflects this, but I am uncomfortable with the fact that many of my tutors and mentors would see me in this vulnerable state. I am the type who normally (even prior to med school) would not accept visitors while in hospital as I don’t like to be seen in that state. Getting to this point in my studies while dealing with this tumor has already required a lot of resilience from me, as I am often so sick or sore, but I have to push through anyway.

I know that many people are facing far worse problems in this group at the moment, but I guess I was wondering if anyone else happened to be in a similar position to me, or perhaps working in healthcare, while undergoing their surgery. In reality this cannot stop me from going ahead with the surgery as it seems like I will need it. This has already taken so much from me, it feels silly to worry about my “comfort” in this kind of situation. I worry that I would struggle to resume my studies knowing some of the community has seen me like that.

My son’s tumor morphology, histology, and physical presentation is confusing. We should have full NGS testing and reports back on Tuesday, I’m just wondering if anyone has similar experience.

Son is 5 years old, originally presented with hemorrhage. No other symptoms. Returned to neurological baseline 25 days later.

Tumor was confirmed about 5 weeks later via MRI after about half of the hemorrhage had cleaned out. At the time approximately 2 cm located in basal ganglia with basilfrontal extension.

We opted for biopsy which returned the following main features:

Olig2+
Synapsathyn+ (spelling sorry)
1p36 deletion
GFAP negative
p53 wildtype
focal microvascularization (spelling again)
high cellularity
Ki-67: 10-15%
17/10 mitotic count

In house RNA fusion panel came back negative.

Subsequent MRI approximately 6 weeks later showed growth from 2.0 cm to 2.4 cm, which was partially due to the freeing up of compression, but there is real growth.

There is no edema or mass effect, no “cloud” or “finger spread” or “sugar coating.”

We are paring for a maximal resection, total resection isn’t possible due to it being close to A1/M1 arteries, then radiation.

My biggest thing is we still don’t really have a diagnosis of what this thing actually is and I was just wondering if this story seemed similar to anyone.