Hi AA3 under treatment.

Had a surgery that had me off temodar for my 6th dose.

Been having “attacks” for a couple days and cant tell if its an anxiety attack or just stress or auras.

Was curious if anyone has similar conditions and if they could tell the difference between them

Hi all,

Last week I (34M) got an MRI done after 2 months of some on and off, strange dizziness spells, infrequent migraines, and some slight nausea. They found a 1.4cm nonenhancing lesion in my right parietal lobe medially. No restricted diffusion. The MRI results said it was low T1 signal, T2 hyperintense, rounded, and did not enhance with contrast, whatever all that means.

Anyways, I am seeing a neurologist next week. This past week was extremely emotional. The first 2 days I couldn't eat or sleep I was so emotional. The last several days I have been feeling more okay and content. I still don't know what I am dealing with but am anxious to get to the neuro and get this figured out so we can begin some treatment.

The week prior to my MRI I played a full round of golf, iced my back nightly and was concinved that I figured out what the issue was (thinking it was cervical vertigo) then I was caught by surprise with these results. My symptoms had felt like they were getting better. But now I am on a steroid this week while I wait to see the neuro and had a little bit of rebound symptoms that mess with my sleep.

Does anybody have some advice on what I can expect? Had something similar in a similar spot? What are the normal treatment options? An awake craniotomy scares me, but I know there are a lot more noninvasive options these days. I will have to wait and see what the doctors think.

My father (73) has been battling with an anaplastic meningioma for 4-5 years now.

This summer, he was on a 6 week course of steroids and, towards the end, became sick with an acute case of pneumonia.

He quickly developed pretty intense delirium symptoms. Confusion, inattention, short term memory issues, disoriented thinking. Very little control over bladder.

Symptoms come and go but it’s been 3+ months now and he is yet to shake many of the symptoms. Still confused about many things and not self sufficient. Some symptoms like pee incontinence came back in the last week after two months. Additionally, all he wants to do is lay in bed all day.

Anyone have experience with something like this? As many of you here probably already know, it’s like a dagger to the heart every day. Would greatly appreciate any advice/suggestions!

Background: Medications: Everolimus + sandostatin injections monthly. Taking since April. This combo seems to have finally controlled tumor for time being. Palbociclib taken earlier this year. Tumor grew quickly and the drug might have dinged him cognitively a little even before pneumonia. Also developed edema from the growth which is controlled but not getting smaller yet.

Hi Reddit, I'm looking for some advice around recovery.

For a bit of context, I am 27 years old and live in Denver, CO with my long time partner. In a few weeks, I will be flying to San Francisco for craniotomy and biopsy of an 11mm tumor that was found in my hippocampus in the right temporal lobe that was discovered after a seizure about a year ago. The tumor is about 1-2mm from the motor cortex which is why brain mapping and craniotomy at a center of excellence were recommended over LITT. Obviously they will not know the pathology until biopsy and resection, but they are hopeful that this is a benign low-grade glioma or ganglioglioma.

After a projected 10-14 days in San Francisco between pre op, surgery, and post op with support from my family (who do not live in CO), my partner and I will fly back to Colorado. I know that everyone's healing journey is different, but what kinds of support from friends / community should my partner and I be considering asking for to make our lives during recovery easier? We have 2 dogs and she works at an office. Some ideas we've had are things like dog walks, meal donations / deliveries, and rides to medical appointments. What else should we be thinking about? What kind of support do you wish you had during your own recoveries? Thank you in advance

Hi Everyone,

I posted a few months ago about my Dad, 63, who had a recurrence of III anaplastic astrocytoma after 11 years of disease-free progression. He had an abnormal recurrence pattern, that was diffuse throughout the brain, many smaller tumors, some far from the original site. He went through chemo and radiation, and the tumors were successfully marked as stable. However, unfortunately, he suffered a perforating diverticulitis, and two large pulmonary embolisms and has been inpatient in the hospital for around a month.

The doctors have run about every test possible, his tumors are not progressing, but he is quickly deteriorating. He has no mobility, cannot speak, has lost function of his bladder, and recently is not swallowing.

We were told by doctors that the rapid decline was due to a combination of his cancer with the current comorbidities, however, we are confused and sad that he has not turned a corner.

We spoke with his Neurooncologist at UCLA, who said that once patients stop swallowing, they have roughly 2 weeks in his experience. However, as we understand it, this is generally due to tumor progression, which it is not progressing.

Has anyone seen anything similar? Or have anything to add we would love to keep hope but are looking to plan his next steps.

All the best, ZH

Hi everyone just after any advise anyone might have. My mother in law was diagnosed with pcnsl a few months ago and has completed her 4 rounds of matrix chemo. They harvested her stem cells and have taken her for a final blast of a different kind of chemo before putting her stem cells back in. The doctor however has spoke with her this morning and told her she may not be able to handle getting the stem cells back in as she reacts so badly to chemo. (She has not been home from hospital since the start of treatment in April due to an infection after every round) has anyone got any experience with this? We are just worried that her stem cells have been taken and she may not get them back and I’ve been reading it is really important to have the transplant to keep the lymphoma away. He has suggested radiation instead.

I've searched this community for info on LiTT for BTE (Brain Tumor Epilepsy), but didn't see a post about it. Radiation and my second cranio have caused refractory epilepsy. I'm on 3 meds, but still have auras and seizures frequently. I need more time post radio to see what happens, but my awesome NS has let me know that some of his frontal lobe patients do need LiTT to reduce seizures since they're prone to it and we can start looking into it in the upcoming months if I continue to have refractory epilepsy. But does LiTT make sense if I likely need to have a third craniotomy in the future anyway? Can anyone share their experiences if you've done LiTT for BTE (not for inoperable tumor).

Hey all. Hope all is well with you and yours. I put my mother on hospice and she came home yesterday. She was diagnosed with cns lymphoma 3 months prior. She had been mostly unresponsive for about 2 months but after receiving her treatment of chemo she woke up and was still very confused but talking and responding somewhat correctly. She then fell into her same bouts of unresponsiveness until the day she was being transported home for hospice (yesterday). She does have fungal meningitis as well and the cns lymphoma which was being treated. She is up and alert. Watching tv...very far from baseline and confused but I can't help but feel I've made the wrong choice. I don't want to put her through much more as she's 64 and emaciated...unable to eat barely drink and can't walk. I dont know if I've given up too soon or this is a possible rally. I dont think I'm looking for advice...just opinions or your personal experiences if any. I hope I'm doing the right thing.

Hello everyone, I dont know where else to go with these feelings and news so thanks for reading this. I just had a recent mri scan where my tumor looks clearer in the images potentially indicating tumor has gotten stronger with more blood flow and it is picking the contrast fluid more. There is also a slight chance it can be radiation necrosis. I really hope it is ( things we start to wish after cancer… really strange) i had 33 rounds of radiation and 12 cycles of temodar oral chemo. Throughout the treatment my tumor was stable. It has a web like structure and it is a risky area. So resection has never been an option. Cerebellum tumors are rarely seen on adults and there isnt much literature to compare or clinical studies to get on… i feel some kind of way. It is different than how i felt during my initial diagnosis but it is a familiar feeling. I am calmer because now i have a care team, i understand the nature of the disease better, i m more comfortable with the terminology and everything. So i m not overwhelmed but i still have moments of intense fear and despair. I now this could even happen to a young child so i should be grateful for at least making it to 33 years old. Knowing this doesnt take the fear or the heartbreak away. I feel let down. By god or universe or whatever higher power that was supposed to be protecting me. I lost my mom to breast cancer when i was 9 yo and she was 38. At 27 i had preventative mastectomy and was really proud, thought maybe i can live longer than my mom did. (Her mom and her mom also died early from breast cancer) little did i know brain cancer was in the books for me and the prognosis of it is a little more grim. I m in a loving marriage with no kids. I have trouble coming to terms with death especially potentially an early one. Whether i come to terms or not, what happens happens but if i cant get healthy i d have liked to at least be ok with what is going on. It is tough. How do you do it? Any words of encouragement wisdom love care or hope are appreciated.

Hi everyone,

My mother (64) was diagnosed a few weeks ago via MRI with two multifocal defuse disease astrocytomas (which they say is the same as a glioblastoma). Aggressive, with one tumour at the frontal lobe measuring 31 x 63.4 x 41.5 mm, and one at the occipital lobe measuring 34.1 mm.

The doctor has described the damage as "unusual", with the affected part of my mother's brain appearing smooth-ish. The doctor couldn't tell us what it was, but "you can see it isn't right." They've said due to the size and location, it's inoperable, and treatment isn't feasible due to her "limited time". She's on steroids to manage swelling (I can't comment on whether they're helping).

My mother stated dragging her leg just before the diagnosis, but it's gotta to the point where her leg is weak, and her ankle kind of twists by itself when she starts walking. I've heard about partial paralysis, I'm not sure if this matches. Any suggestions on how to ease the twisting/dragging, or suggestions in general would be amazing.

i’ve been on temozolomide for about 7 months now, i start my 8th cycle here soon. but i’ve been experiencing some troubling side effects like trouble sleeping, trouble with my memory, nausea, confusion, the trots, heart palpitations. i’m just curious to know if anyone else who’s been on it or knows someone who’s been on it that’s experienced the same side effects.

I am 24 years old still waiting on the prognosis. I get focal siezures on my left side every day. Dont know what this is going to be like.

Hi, I am interested in regaining/repraired. I have right side (limbs) practically useless. Please some share stories.

Hi! I will try to keep this as short as possible, but it is a lot and im desperate for answers!

My 3Y/O was diagnosed with epilepsy 8 months ago. We cannot find a cause and he's become refractory. He had an MRI in May that was normal. He had another one two weeks ago during his most recent admission, that i was told at the time was normal. We got discharged and are now going to get second opinions because he is continuing to worsen. Upon looking at his MRI from two weeks ago, the radiologist noted a new 10 MM growth on the pineal gland. He has seizures, nausea, vomiting, and extreme aggression after seizures. We will be going elsewhere for care, and his PCP was extremely concerned, but im just curious if anyone has a similar experience because research varies online.

Didn’t think it would hit me like a truck but it did. Got SRS 8 days ago for my second grade 2 solitary fibrous tumor, the damn thing just can’t stay away, and here’s hoping radiotherapy zapped it.

I’m not having any other side effects (yet?) but MAN this fatigue.. missed work yesterday and am worried about driving mainly. Did any of you experience fatigue so bad you had to miss work/were unable to drive?

I’m right around that time the nurse told me I’d be experiencing this and she said in a couple weeks I’ll start feeling ok again.

What’s your experience with it?

x

Hi guys. I’m wondering if anyone here had a significant other or family member leave during surgery or what the norm is. I know it’s typical for people to wait during serious surgeries, but these craniotomies can take so long. My boyfriend waited 4 hours to see me after pre-op just for a needle biopsy that was supposed to be only a half hour long (not including prep/setup). They didn’t let him back until I’d been awake over an hour too. We were there a total of 8 hours. This makes me think it would take very long for a whole resection.

My craniotomy is estimated to be 4 hours (don’t think it includes prep and intraoperative MRI setup) so I’m thinking my boyfriend could be waiting 8+ hours between seeing me. My tumor is in the motor strip and they will be doing a lot of brain mapping and electrode testing. He doesn’t get paid time off, it’s on one of his workdays so he’d have to request it off, and he makes like $300 to $450 a day (tip dependent and ~11 hour shifts). His work doesn’t like when he takes days off either. My retired uncle will be driving up and staying at the hospital most of the time, just might hang out on-call in his hotel across the street for the first few hours. Would it look bad if my boyfriend left after I leave pre-op to go work for like 7 hours? He would be back either before I woke up or shortly after, I think… I wish I knew just how long I’d take! I’m conflicted about him sitting there for 8+ hours taking the whole day off for no reason, but also thinking it might look bad or be disappointing if he didn’t. I felt kind of hurt when the question first came up, but thinking it over and imagining myself in his shoes I’m thinking differently.

Has anyone had family members leave during a long surgery or are they expected to all wait? How would/did you feel about it if they left? Or how long did they have to wait if your surgery time was estimated similar to mine?

Any feedback is appreciated!

Hi guys,

Diagnosed with astrocytoma in 2020, had my 2nd surgery late 2023, scan showed clear in early 24, I then had another scan in May 24 which was also clear with no change,

Just had a scan in August 24 which my doctor said it has shown slight change to be specific approximately 2mm from Januarys scan but no change from May.

Could this be regrowth? My doctor said he isn't sure as it is so small it could be scarring or the brain healing. What are your thoughts and should i be worried?

40M, Stage 3 reccurent Glioma

10 years ago I had a tumor removed via right frontal craniotomy. That was followed by temodar. It turned out to be grade 2, size of a golf ball. 2 years last month, I had another surgery. It was the size of a fist. Turned out to be grade 3.

Here we are again. My doc let me know this morning: We've got a few weeks to prepare and schedule and get everything sorted out, but it's growing again. I should hear Monday what the official treatment plan is, but my neurosurgeon is fairly confident the radiology team will agree radiation tablets inserted at the surgery site is a good addition to what we've done prior.

I'm very worried it will be grade 4 this time. I know I don't control that and it doesn't change the fight I have to get through. And I WILL get through this again, bring it frickin on. I sure don't wanna do this again though.

I guess this is really the first time I've received this news while also having a full understanding of progression. Is anyone else familiar with the worry that your tumor is a higher grade? I feel a combination of scared, pissed off at the bad luck, sick to my stomach, determined and worried.

Peace, love and strength my friends. Today kinda sucks big-time but I know there's folks here who would totally gladly swap spots.

My dog of 12 years dropped dead about 48 hours ago, right in front of me. Heart attack. Good lord this week isn't pulling punches.

After a 60% removal from surgery, how quickly can they start to grow back?

Hi, I am a 48(F) who has been faced with terrifying events in the past 6 months. I've researched a lot of posts here and here is mine. We are now in November. Back in May, I was rushed to the ER with an internal GI bleed. Hemoglobin dropped to 6 (normal range is 12-15), 5 blood transfusions later an emergency major abdominal surgery where the mass (benign) was resected. I was recovering just fine - back to exercising, etc. A month later I started noticing an unintentional weight loss and hair loss . One day at work, my heart rate (apple watch) dropped to 37 and got dizzy. I drove myself to ER thinking sth is wrong with my heart. After the CT and EKG - my heart was ruled out fine. A couple days after that I still didn't feel good - kind of dizzy, brain fog, no energy. Then a month later I started having the following symptoms:

• continued hair loss
• headaches that will start with my nose getting very cold at the top (still ongoing, especially in the evening, not so much in the morning)
• slight pinching sensation in my both cheeks (getting less by each week)
• paresthesia's in upper arms and the forearms (come and go - this week it's not bothering me)
• ice cold pinkies on both arms (come and go)
• dark circles under my eyes (in 1 month I added 10 years to my age)
• the back of my skull started to hurt (on the same line with the eyes) which kept me up at night. I was given a 300 mg gabapentin that helps to relieve the pain and I can sleep. Started 2 weeks ago.
• I am not dizzy when walking, driving as of now. But if I move my head in a circle liked exercising the neck, I get veritgo, so I am assuming it's there, but just slightly.
• a feeling of a lump in my throat after I eat (but I have a small hiatal hernia, so it could be GErd)

I went to see a neuro who then ordered an MRI with and without contrast. The 3T MRI results are very scary to me along with my symptoms: "T2 prolonation involving much of the inferior pons extending into the ventral medulla bilaterally as well as extending int the right cerebral peduncle superiorly. There appears to be associated mild diffusion T2 shine through associated with this abnormality. No postcontrast enhancement. Differential diagnosis includes sequala of osmotic demyellination, nonenhancing glioma, or nonspecific rhombencephalitis however the lack of postcontrast enahncement suggests rhomboencephalitis may be less likely."

After this report, my neuro who ordered an MRI sent me to ER at Johns Hopkins hospital saying that she thinks that it could be an osmotic demyelination and wanted Johns Hopkins to take a look. At the ER, Johns Hopkins disagreed with her diagnosis and did their own MRI with a 1.5 T machine. The report from Johns Hopkins favored the artifact in the pons area and said: "No significant signal abnormality is identified on the inversion recovery sequence. Artifactual signal is favored in the region of the pons ( i guess because it looks like a smudge). This region is not abnormal on the multiple additional sequences" . Obviously the machine is not as strong as the 3T so did they just write it off as an artifact?

My question is how Johns Hopkins' report could ignore that area in the pons and rule it as artifact just because it's a blurry smudge? Don't they have multiple scans of the same area to make sure that the abnormalities are captured? I have read that nonenhancing gliomas show as a smudge on the MRI scans. My second question is how out of a sudden I started having all these symptoms in this short period of time (2 months) pointing to a nonenhancing glioma (since the osmotic demylienation is ruleld out) without any symptoms before (I am very good with listening to my body - I have always been very athletic, eating healthy and advocating for a healthy way of life).

My regular neuros (i have seen 3 by now) all say that they don't think that it is a glioma (probably calming me down). I have been given meds for headaches, Nurtec, which gets rid of my headache, but not of the burning/ache in the back of the skull. When I tell my neuros about hair loss and weight loss they don't really think anything of it. I also consulted with a very good neuro surgeon (he has done many complicated brain surgeries) who said that by looking at the scans he currently doesn't see any features that require surgery. Is he saying this because the pontine area is inoperable?

I have scheduled a consultation with the Johns Hopkins neuro-oncologist/surgeon next week to get more details. In the meantime, I am counting days till i die, I can't do anything and I am turning into a vegetable who only wants to stay in bed and try to find answers and diagnose myself. I am waiting for my symptoms to worsen as I am listening to every slightest thing in my body indicative of the last day of my life coming. I am also reading that gliomas in the pons area are inoperable and are very aggressive. I can be fine with me going to the other side, but I am horrified that I will leave my mom (she doesn't speak English too well and is all alone without me here in the US).

Sorry for the long post, I am just so desperate and am beyond myself.

My mom is about to go under her 10th round of whole brain radiation for leptomeningeal cancer. She is currently on oxy and morphine for pain, and Ativan for anxiety.

She's in the hospital and is extremely confused. She just called me in the middle of the night to ask where she was, what day it was, and if she was in trouble.

I reassured her and said "I'll see you in person later" and she misheard it as "see you in prison" and started getting worried.

She is also worried about my dad and the doctors "secretly judging her for her cognitive function".

Are these side effects expected?

Hey internet friends! I made it through my treatment with no issues (which I’m incredible my grateful for) and it seems like the neurosurgery team are ready to discharge me from the ward.

I’m glad to not be a patient with the ward as my recovery is going very smoothly, but I can’t help but feel really sad. Has anyone experienced this? I think because my care team were incredible and I’m going to miss being taken care by such a good team.

This is my first post (forever the lurker), but I just need to get this out to people who might understand.

My husband had his original tumor diagnosed and emergency surgery performed to remove it in April 2023. Grade 2 astrocytoma with IDH mutation. He’s been regularly monitored with scans every 3 months, and they recently found that it was growing back.

We’ve been watching it closely, he switched from Tibsovo to Vorasidenib once it became available, but then in his scan last week it’s shown faster progression and they believe is transforming to a grade 3.

Here’s the kicker. I became unexpectedly pregnant with our third child in the spring, and I’m eight months pregnant. They want to do surgery, before the baby is born, and in the new year start chemo and radiation. I trust our doctors (we are at Hopkins) and know they’re some of the best in the world. So if this gives him a shot at a longer life we’ll do it.

I’m just so so sad. It’s been hard enough being a caregiver and having small children, but now, while frankly I’m not physically 100% myself, we have to do this again. During his last surgery he struggled to walk for several weeks and I was healthy then. I can’t lift him now, I can barely lift our toddler son. I asked if the surgery could wait until January and our NO said it wasn’t a good idea.

This all just sucks. It’s like the joy I was feeling about having our baby (at Christmastime no less) is being completely robbed. And I’m just so tired. We will also be spending the first few weeks of maternity leave driving an hour daily for chemo and radiation as well. It’s just not what I was planning (which sounds incredibly selfish given that he’s fighting for his life).

Thanks for reading.

Accidental hypothalamus tumour found in 2017 no growth in 8 years, anyone else had this type of tumour? I’m 42 years old. Just had my 8 year scan no growth (stable) since they randomly found it? 12mm in size in my hypothalamus, my grandad died of a brain tumour at 56.

Is this normal for a tumour not to grow 8 years, seems like a long time, my neurosurgeon who is very good said if there’s no growth at 10 years we will probably stop scanning, I get this feeling he thinks mine is low grade and possibly there since birth and stopped growing. I’m confused as you read even low grade tumours grow over time but mine never has (yet).

Hi everyone. I just finished my third cycle of chemo. I had my Vincristine on Thursday. Usually, I get neuropathy and pain in my jaw and face starting on Sunday night/Monday after each one. They had to lower my dosage so that it’s more tolerable. Last night, I woke up in the middle of the night with really bad chest, rib, and back pain on my left side. It radiates around the area. I ended up taking a pain pill because it hurt so bad. I’ve never had this happen before and I didn’t do anything different in my daily routine. My PCP prescribed me more tramadol and to give it a few days to see if it goes away. Tylenol won’t touch the pain so far. I did end up needing to stop my Procarbazine early this cycle because I had an allergic reaction with rashes and hives all over. I was just wondering if anyone has had this type of reaction happen before during PCV?