Hey everyone, my mom (56) is just starting her 6th and potential last month of chemotherapy and the discussion of going off of it/next steps has begun.

We asked the doctor for her thoughts on staying on it moving forward, because obviously the thought of changing anything when things seem to be working well can be daunting and scary. The doctor confirmed with us that there is a risk of your body shutting down with this strong of chemo, but also a chance that it could have a positive reaction because my mom has had very little side effects or reactions to it.

What are your experiences? Has anyone here done or known someone who has done the full year? Any insight/opinions?

We know everyone is different, we know there is no two cases alike with this diagnosis, just hoping to get some opinions and chat more about it because we truly do not know what decision to make.

Edit: the doctor’s research on stopping/continuing is based on a study of only 80 people, this study is the reason they dropped the original 12 months of chemo down to 6 months. So even she couldn’t give us a confident answer on what to do.

Hi all just wanted to know if anyone has any experience with their DMG disappearing from scans 6 months after proton treatment and currently on ONC201 .

Any information can help , just wondering if this is what they call the “honey moon” phase after radiation.

Thank you all

My daughter has been on 3 seperate Anti-Epileptic drugs related to her seizures & auras: Vimpat, Lamictal and Keppra. Keppra is, for some reason, the most effective in reducing and surpressing her seizures. Whilst on it, she sometimes won’t even lose consciousness during a seizure and it may only last 5-10 seconds. On the other hand, Vimpat was highly effective in surpressing her auras, she seemed to stop getting them altogether. She was taken off Vimpat temporarily when going on Lamictal and Keppra, as Vimpat wasn’t surpressing her seizures and keeping her on it (alongside the other two AEDs) would be potentially harmful to her Brain and/or CNS, keeping in mind she is 11. Shr recently went back on Vimpat as neither Lamictal or Keppra were surpressing her auras; she started to get them again and more intensely and frequently than ever before, she said the “hot wind was getting hotter and hotter everytime it came” (she always described auras as feeling like a hot wind blowing from her toes gradually up across the rest of her body, until it had covered her entirely, while this happened she would also hyperventilate and lose the ability to communicate temporarily). The neuro oncologist decided that she should go back on Vimpat, putting her on a stronger dose this time.

For a few days, the only concern I had was her declining speech and her nightly outbursts of agitation (which had been a trademark of her cancer from the beginning, also being her first symptom). They took her off chemo and, for a little while, I was happy to see some colour return to her little, soft face.

However, in the last 2 days, she has had several massive seizures. Most of these seizures weren’t even antecedant to auras and came quite suddenly. They weren’t like her more common seizures, which she would have maybe once a day while on her AEDs and which were a highly surpressed version of her original seizures. These are just like the ones she’d had from the start: falls (if standing), loses consciousness, unresponsive, stares blankly at ceiling, splays her toes, assumes happu baby pose and repeatedly smacks her lips. She has had about 6 in the last 2 days, each lasting an average of about 40 seconds, which would’ve been considered very bad even before she was on her AEDs. I’m trying to remain calm and reassuring to her as best I can, but even the neuro oncologist appears to look at me now in such a way that screams “this is really really bad.”. As I’m writing this, I’m awaiting the results of an MRI she recieved today. I can’t even say I’m terrified anymore, I’m just completely drained and broken, spending everyday watching cancer eat my daughter’s brain has been soul-destroying. Did anybody else have their seizures return suddenly while on AEDs and become unresponsive to the medication? If so, was the problem resolved by switching medication or increasing the dosage?

Hi everyone,

I was diagnosed with a grade 2 astrocytoma (IDH-mutant) about 4 weeks ago. My surgery was described as a gross total resection with clear margins, indicating no infiltration beyond the localized site and well-defined borders. (I'm assuming my margins were analyzed in histology, as I believe that's standard practice?)

I’ve been told my surgery was very successful, and my post-op scan showed no residual tumor. However, I’m feeling confused because everything I’ve read or seen seems to suggest that recurrence is inevitable—it's always framed as "when" it comes back, not "if."

I’m not in denial about how these tumors behave—I understand that gliomas have a risk of recurrence. But given the localized nature of my tumor and the apparent success of my surgery, I can’t help but wonder: is it really a matter of "when," or is there a chance it could stay dormant or not return at all?

I know no one can give me a definitive answer, but I’m hoping to hear from others who’ve been in a similar situation. Did anyone have a gross total resection with clear margins? How have things gone for you? I’m currently on a watch-and-wait approach with 3-month scans, and while I know I’m in a good position, navigating all this new information is overwhelming.

Cheers, and thank you in advance for any insights!

Me (31yr M) - astrocytoma grade 2. Currently post surgery - supposedly good margins but on 4monthly MRI.

We got engaged month before my diagnosis. She has been the most supportive, but unfortunately underlying compatibility issues has caused this relationship to end. (She was truly willing to support me throughout this journey)

As much as I still want to improve and make the relationship work, I need to move on.

My question is, what advice or approach does this community have on approach to finding a partner going forward? I do consider myself somewhat attractive. I'm a resident Doctor in South Africa, charismatic person I'd hope... But the whole aspect of meeting someone and then telling them that I could only have 15yrs left of life? Very tricky and makes me feel quite anxious and potentially lonely forever?

Appreciate any emotional advice or even practical advice such as apps for people in similar situations.

Hello everyone,

My 74 year old father was diagnosed with a 6 cm brain mass between his brain stem and cerebellum after experiencing symptoms that no one could explain for months. He lost 90 pounds overall, and is currently receiving TPN nutrition and hydration through a PICC line, as well as all of his medications. He had his gallbladder removed on October 11, but he was not recovering afterwards the way you would expect. He went several weeks without proper nutrition and ended up fainting in my front yard the same afternoon that he was cleared by that surgeon and told he could wait ten more days to see GI and get nutrition. I called an ambulance and demanded that they transport him, not me and my family. We have been caring for him at home and I am expecting to do the same thing as soon as we can bring him home safely from the hospital or rehab. The quality of care was really just not what you would expect so we will be keeping a close eye on him afterwards

He is set to have surgery this coming Wednesday and I have some questions:

1. they suspect that the tumor is a ependymoma or subependymoma, will it still be sent to pathology?
2. they were not able to tell us from the imaging where the tumor was attached. If it is attached to the brain stem or too close, they will just remove what they can safely remove and leave the rest, correct?
3. if you had a similar surgery, what was your recovery like? I know it will be somewhat different, but just in general terms. My father has not stood up or walked on his own in 7 weeks or so now. They were not really getting him out of bed the way that they were supposed to when he was in the hospital. They got him out of bed two times in 17 days to walk and only got him one shower when he was there.

He is 6’2 and currently weighs about 135. His doctors and physical therapist agreed it is the safest to not get him to stand or walk at this time, because we don’t want to risk further injury or another fall

Has anyone experienced similar:

Last month i experienced tingling sensations - both sides - which started on the bottoms of my feet and then radiated up my legs and onto my arms and up to my head. Very freaky - happened over and over about 1/hour. I contacted the neurosurgeon on call and spoke to him about it. Had one while we spoke and explained what I was feeling as it happened. Basically he said it was not a seizure - and it sounds like my body is just waking up and making connections. My neurosurgeon agreed. It stopped. Now today I am having those same sensations just not radiating anywhere. I just want to hear I am not the only one who has experienced this….

My M was on Brain Stem and removed. No other treatment. I do have numbness in left food/leg and left arm a bit.

Please tell me I’m not the only one.

I recently got diagnosed with craniophrayngioma. It’s already at a concerning size which is pressing up to surrounding tissue, including my optic nerves causing my existing strabismus to worsen. We’re currently discussing surgery and medications that I’m gonna be going through but what scares me the most is radiation therapy.

Has anyone else gone through radiation therapy after this type of surgery?

What was the side effects like for you and how did you manage it?

Has anyone been successful in getting pregnant after chemo who didn’t freeze their egg’s beforehand? I wish I was able to freeze mine but I was talked out of it by my parents and I regret it. I really want to have a baby but I’m scared my tumor will be affected if I become pregnant.

TL;DR: Having brain cancer has taught to be more present in my life, leading to improved relationships with my family and overall better attitude. I am finally able to acknowledge this and publicly express gratitude

Ten years ago when our kids were much younger my wife and I decided to try something to help them recognize how blessed their lives truly are. For the entire month of November before Thanksgiving, every night we would gather the everyone in the living room and we would each take turns telling something that we were grateful for that day. One of the kids would then writing this down on a poster board that stayed out on display. The rule was you had to come up with something unique every time, no repeats on the board. Then, the day before Thanksgiving all of the items written on the poster were transferred to this table cloth, which we've used every Thanksgiving since.

Fast forward to June 2021, I went to the ER after experiencing a flurry of focal seizures, where an MRI showed a sizable tumor in my right frontal lobe near the midline. Surgery a week later was able to remove 90% of the tumor, which pathology testing showed to be a grade 3 Oligodendroglioma. After a month or two in physical therapy for supplementary motor area syndrome that caused weakness on my left side, I was able to go on living my life. I regained enough of my cognitive abilities that I made a personal, educated decision to delay radiation/chemo for as long as possible, eventually starting on Ivosidenib (Tibsovo) about 18 months post surgery after some indications of progression. Scans every 4 months have been stable ever since.

Yesterday, while eating dinner, my youngest daughter lifted her plate and playfully read off the what she was grateful for where she was sitting. Underneath my plate, amongst others, was the word 'Brain'. I was prompted to add the word 'cancer' below (far LHS). This is a huge step for me, to finally be able to fully accept that not only do I have an incurable cancer, but that this journey has completely changed who I am as a person... For the better! Having a brain tumor has completely changed my perspective on life. I have come to realize that my priorities were completely out of whack before my diagnosis. For all the pain and suffering that I and my family have gone through over the past 3 1/2 years, I can honestly say that I am now better person.

And for that, I am grateful.

https://preview.redd.it/q4oy3xzb6x3e1.jpg?width=4032&format=pjpg&auto=webp&s=27aa2a96337be4a6166d1c0fd704ae9beb5069d1

I am 24 and have high-grade glioma I get siezures frequently what will it be like towards the end.

My daughter’s speech has been gradually and rather hastily deteriorating ever since her craniotomy. I thought that perhaps it was a by-product of the proceedure but it has been worsening with the days, she can barely speak as she slurs words and now seems to speak with a permanent lisp of sorts. The oncologist has informed me that this is likely connected to her tumour’s growth in her frontal lobe, following a recent MRI.

I was very concerned and confused, they took her off chemo because they said it wasn’t shrinking the tumour but insisted that the cancer was responding to the radiation, how and why is it still progressing? He explained to me that the form of brain cancer (glioblastoma), is very fast progressing and resiliant to much treatment, but that also, her cancer in particular, is highly malignant and shows a great capacity to spread, this is the same reason that they need to up/change her pain-killer medication nearly everyweek in order to treat her headaches.

Has anyone else experienced speech problems as a symptom, if so, have they progressively gotten worse consistently or did they ever stop worsening? even for a while?

Title says all. My aunt was diagnosed with a GBM 5 years ago. Surgery chemo and radiation and she was in remission for 4 years. Last year there was a reoccurrence. More radiation — tumor gone but she’s been diagnosed with radiation necrosis. She’s a different person. Says she feels like she’s constantly spinning, slurred speech, can’t drive etc. I’m looking for any tips on how to help her. I’ve read about hyperbaric oxygen chambers for treatment of radiation necrosis and we’re looking into that. Her doctor has “exhausted all options” I just have to believe there’s something out there that we can do to at least mitigate her symptoms. Thank you in advance

I (20m) hope benign tumors are welcome here, as I've been diagnosed with a pituitary adenoma wednesday, following vision problems. It has been emotionally confusing, as I was fearing a malignant tumor. In a way I feel glad, but it's still really scary. I don't know what is emotionally appropriate. I feel as though sadness is misplaced since it's benign and probably just a case of removing it (I'll know more about the procedure on monday), but I may be underselling the whole situation. I guess what I'm asking is how other people have reacted to benign braintumors.

Hello community. I’m my 34 y/o sister’s primary caretaker. Diagnosed in May 2022, with Grade 4 astrocytoma on the brain stem. Shes been recently medically retired after 14 years in the AF. She’s done so well, surpassing over 18 months of initial timeline. Now that she’s retired from active duty, we have good insurance and resources. She’s had 2 rounds of radiation and currently on ONC 201 trial. I’ll add the radiation caused brain necrosis and brain inflammation. 1-2 months after second radiation, she’s had massive dizziness, nausea, constant retching, decline in speech, left side weakness, poor short term memory, and unable to walk. We’ve been told to take her to get her into Hyperbaric Oxygen Therapy and vestibular therapy. Thoughts? Anyone had these therapies?

After advice for my father who had brain cancer.

As time goes on, and I believe it's due to the extensive treatment he has experienced. He doesn't listen, and his memory is not great. It proves a great deal for my family and carers to look after him. His mobility isn't the best either but we're able to manage with that and honestly are greatful regardless that he's alive with us today. He is very stubborn now and things will often be repeated multiple times everyday only to find yourself telling him the same thing the next day, week and month.

Just seeing if there were any types of aftercare / treatment to help with this?

I’m in Canada and I am having a third MRI in January. They are monitoring it and will see then what to do.

My kids are teens but very sensitive. I can’t hide this from them. They know I had a doctors appointment today.

I know they can be very slow to grow and my congestive heart disease is probably more of a concern.

But how to explain that I have a little cancer in my brain???

.. to my absolutely amazing 67 year old father. He was diagnosed with an oligodendroglioma in November last year, they said it had been growing for years (had calcifications within it) and was Stage 2 according to the biopsies taken. He had six rounds of chemotherapy this year, ending in August, and that was where his health really suffered. He picked up chest infection after chest infection, and this week's chest infection proved to be the final straw - too much damage had been done to his lungs that wasn't reversible. 😔 He was on a BI-pap machine in the hospital which I was unprepared for, and I will never know whether he was aware the family were there or not, but I hope that he was. After a few hours and some blood tests, his BI-pap mask was removed, he was given medicine to make him more comfortable, and we played some of his favourite music, Led Zep, Pink Floyd and the Alan Parsons Project. (at one point he lifted his arm, which he'd been unable to do since the morning, so we think that was appreciation of the song choices!)

I'm harbouring some pretty angry feelings towards the chemo, I must admit. After his craniotomy last year, he was back to my dad from 8+ years prior - it was absolutely amazing. With each round of chemo he seemed to slip further into himself and became more and more poorly. I'm wistfully wondering what may have happened if he'd waited 6 months for the first round just to compare MRIs and see if it had grown at all. But, shoulda, woulda, coulda.. We didn't, and so it is what it is.

I do hope that chemo has worked for others! I'm not against it by any stretch, I just wonder whether my dad may have had longer without it.

Anyway, thank you for reading and, as ever, #fuckcancer

M28

Hi Everyone and Happy Thanksgiving. I have been suffering from facial numbness and periodic headaches and some numbness in my right leg off and on for the last 8 weeks or so. I thought it was a number of things (maybe a supplement I was taking, or Ms etc). I wound up going to a minor emergency because the anxiety was killing me after my GP told me she thought it was just anxiety causing the issues.

The CT scan came back clean which was relieving, but I did get a referral to a neurologist who did a bunch of auto immune bloodwork and an MRI. Bloodwork came back clean but I just logged into my patient portal yesterday and saw that the Radiologist had noted the brain MRI was normal except for a “small 1.6cm Pineocytoma with enhancement”

Of course my neurologist is out of the country until my follow up next Tuesday, and I couldn’t get the radiologist on the phone. The internet is mixed on this stuff, but would love to hear anyone else’s experience with dealing with these and treating. I’m scared

I've been diagnosed with a grade 2 astrocytoma, have just finished radiation and am about to start chemo. Lately I've been getting blindingly bad pain that feel like my entire nervous system is on fire. I've told my neuro about it and he has prescribed me stronger pain meds. He says it will/might happen, not every case is the same. Has anybody else experienced this?

Hi Reddit,

I (30M) recently had an MRI on my head and they've found an abnormality which is suspected meningioma. It's around 10mm x 10mm. I'm in the UK and i was referred on the NHS just over 20 days ago to a neuro surgery department and I'm awaiting an appointment with them to discuss further.

Essentially, they've suggested I need a contrast CT scan to fully figure out if it is a meningioma and then course of action after this.

This came as a massive shock as I have no symptoms. I'm really anxious and worried about it as well as losing sleep thinking about it.

I realise some people on here are likely in the US but has anyone had any similar experiences on the NHS? Is it typical to wait so long for a second appointment? I'm considering looking into private healthcare options but I imagine that will be incredibly expensive.

As the days go by I'm getting more and more worried and starting to over think things a little, would any advice at all. Thanks

I don’t know if Prof Richard Scolyer is well known outside of Australia? For anyone not familiar, he’s a melanoma doctor who was recognised as Australian of the Year earlier this year.

18 months ago he was diagnosed with GMB. IDH wild type, and unmethylated. So not a pretty picture in terms of prognosis.

He made the decision to forego chemo, instead receiving a special dispensation to undergo combination immunotherapy and a personalised cancer vaccine - experimental treatment based on his own research in melanoma treatment.

He posted on his socials last week that his most recent MRI shows no evidence of recurrence. Which is huge at 18 months!

He does go on to say we can’t know if he’s just really lucky or if the treatment works and how important clinical trials are to really understand the value of this treatment pathway. Researchers hope to use the data from Scolyer's treatment to create a clinical trial going forward.

Hello everyone. I've recently learnt that I have a meningioma, the diagnosis is still very fresh and it still feels quite surreal to me. It's as if my mind has somehow been disconnected and it's only now that I'm starting to slowly realize that I actually have a brain tumor. I’d have never guessed it, I've never had many symptoms apart from migraines and sinus pain until I had a seizure... But anyway, I just want to ask, what to mentally prepare for? How can I possibly ease my mind? I've had depression before and let's just say life hasn't been too kind to me and this just feels like the ultimate kick in the gut from fate. My life hasn't even started that much yet and here I am learning that I have a brain tumor, it feels like such a huge weight that I'm not sure I can even handle, honestly. Any tips? Any hope? I'm probably overreacting as meningiomas are far from the worst tumors, I suppose, but mine is already grade 2, which is atypical. Has anyone here dealt with anything similar?

Anyways, sorry if I’m venting here too much, It’s just I’m totally confused, scared and still not sure what I should brace myself for. 

I just got diagnosed with a grade 2 IDH mutant astrocytoma. I had surgery to remove most of my 1.4 cm tumor, my frontal lobe. My doctors didn't give me any sort of prognosis. I am a complete wreck. I am looking for insight from anyone who is on this medication (VoRanigo). I'm looking for insight from anyone who has this diagnosis. Any sort of information I have is just information I've gathered from online, which has left me crying all day everyday. I've been completely healthy my entire life. And we found this by accident.Please, can anyone share their experience with this diagnosis?

As in, received special treatment or handouts/charity of some sort?

I’ve had family members wanting to create a gofundme for me since my astrocytoma diagnosis as I’ve lost my job and needed 2 back to back surgeries - but I just can’t bring myself to accepting such a thing.

So I’d like to hear stories of how it’s benefited you even if it’s leaned towards the premise of not being ethical per se.