Mother has brain mets and primary cancer lung. She was in treatment for last 6.5 years. now all options are exhausted. She’s currently in home care with no active treatment, bed ridden post seizure episode.

She was able to eat and talk a month ago but now unable to talk and when trying to talk can hear only low vibrations which is difficult to understand. But says a word or two clearly some times. Mostly asleep. Responds to touch and name. Sometimes looks at people’s face. But sometimes doesn’t respond just stares. Has hallucinations. Body jerks. Unable to swalllow - so giving medication has become very difficult, sometimes we are not able to give medications at all. Asks for water and food sometimes but doesn’t swallow. Couple days back aspired and then we had to use suction machine to remove secretion.

As she’s unable to eat should we try NG tube / feeding tube ?

I’m curious to see if anyone else has noticed / experienced this… and I apologize for the length but it’s necessary.

I’ve been a chronic pain patient since 2006… still amazed that it’s been 20 years… but it all started in ‘06 when my L5/S1 disc became infected causing the disc to completely dissolve which left me bone on bone until my body autofused the vertebra and hip together. That caused me to develop degenerative disc disease on top of the fact that the collapse of that disc space resulted in there not being enough room for my nerves to exit my spinal cord without being pinched. As you can imagine, navigating the world of pain management providers since then has been a headache to be polite. I finally discovered the greatest pain management provider a year ago who also became my primary care provider as part of their whole deal which allows them to avoid the typical image of a pain clinic and they do truly care about the whole patient, not just how many scripts they write.

I say all that because even though we’ve developed a great patient-provider relationship (probably the best such relationship I’ve had in my 53years), the negotiations involved in pain management and trying to get a change or increase in strength/quantity of opioids always has that air of egg shell walking even with great relationships thanks to how deeply US healthcare and government are in bed with each other. Requesting small tweaks are still nerve wracking but that all seemed to change after being officially diagnosed with having a low-grade glioma 3 months ago.

Yesterday at my pain appointment, I asked what we could change from my normal 6 a day 10mg oxycodone regimen to handle breakthru / pain spikes. For whatever reason (as I told my provider) due to either the weather, how I slept, or me getting a fart stuck sideways, about 4-5 times a month I’ll experience a pain spike. My typical pain scores are a 7 without meds and a 4 with, but these spikes are usually a 9+ without and if I take 2 pills (which forfeits one of my evening pills) it’ll only drop it to an 8. I make sure to solidly stick to my 6x day count regardless. I’ve brought this up before recently and have had the same thing happen in the past, albeit at a less frequent occurrence rate, with other providers and was basically told to get out and exercise more, meditation, blah blah blah… basically enjoy raw dogging it until it passes. Since my PCP and PMgt provider are one and the same now, she was already aware of the glioma diagnosis. Maybe I’m imagining it, but when I asked what if anything we could do to address the spikes, the reaction and response was on the same level as if I had said ‘oh, I’ve got a hangnail I need help with’. Bottom line is that I now have a new 4mg hydromorphone (dilaudid) prescription to take on an as needed basis to break a spike. Granted, it’s only for 10 pills but still! If I only have 4-5 episodes a month then 10 should be more than adequate to handle that and it’s not like I don’t have a monthly appointment with her. Maybe the last 20 years of being a chronic pain patient tainted my outlook on providers in general, but even when I went to the ER a little bit ago (post-diagnosis) due to passing out (blood pressure issues) and awaking with a severe intractable headache, there were no sideways glances given when I asked for something stronger than the morphine initially offered up by the ER doc. To contrast the struggle, a year ago (pre-diagnosis) I severely dislocated my shoulder and the attending scoffed at me when I asked for something stronger than Toradol and said ‘well, you’re already taking oxycodone’ which after waiting in triage to be seen and going through the whole imaging process and what not, it had been a solid 8 hours since my last 10mg dose so that pill had long done what it was ever going to do.

I’m sorry that this got so long winded but I felt that this level of detail was necessary to properly convey why I’m confused and curious about this and to see if I’m just imagining things or what. Let me know you’re thoughts. Thanks in advance.

My mother has had lung cancer since 2015, which had been managed well until now. She had a brain bleed and a seizure almost two months ago, where they discovered a 3.7cm brain tumor that had metastasized. We are considering Gamma Knife Radiosurgery pending insurance approval. She took Dexamethasone 4mg 2x daily during her 10 day hospitalization plus 30 days post, which was discontinued by the Radiologist Oncologist. She is still taking the Lacosamide started during hospitalization, 100mg 2x daily. Since discontinuing Dexamethasone and only taking Lacosamide she sleeps most of the day, appears to sometimes have tremors and her balance and walking are worst. I know these are side affects from Lacosamide but am wondering if stopping Dexamethasone made everything worst and if the Lacosamide dose is too high - would greatly appreciate any feedback TYIA!

Anyone have thoughts or experience there?

So I'm a 30 year old male who had a tumor on my right parietal lobe resected and the doctors that reviewed my case are recommending I go through 6 weeks of photon radiation and the hospital that I had the surgery at doesn't have the equipment for proton beams. I'm really worried about the potential long-term damage to the healthy surroundings tissue from the radiation and was wondering if there is clear evidence that proton is safer for this or if people here have had experience with this type of treatment?

Should I be looking into a 2nd opinion from a dr at a different location?

Hello everyone, my dad was diagnosed with brain tumour Grade 4. He had tumor removal surgery on September but due to brain swelling and bleeding, he needed a second surgery (decompressive craniectomy) after a week.it's been a month. He was on a ventilator for a week and now has a tracheostomy and an NG tube for feeding.

He can move his hands and legs, lift them, move his head and lips, and respond to yes/no questions through gestures. He breathes on his own.

For anyone who has experienced something similar, how long did recovery take?

my husband has a grade 4 astrocytoma idh 1 mutation + methylated. his oncologist wants him to go on Avastin but it limits a lot of the potential trial treatments he can be eligible for in the future as we all know.

anyone with the same diagnosis who’s been on avastin or decided to skip it? im also wondering if his oncologist is suggesting it more for “symptom management” because they gave him a short prognosis and the clinical team is under the mindset of there’s nothing they can do - which is not my preferred mindset.

A bit of back story, I started having small symptoms few months back: sore joints, fatigue, bad sleep & insomnia. Around 18 days ago, I started feeling like I cannot walk straight in line, cannot drive straight, had difficulty pronouncing words.. decided to go to ER thinking it may be a stroke. After CT scan, doctors said that I have bad brain swelling in left side of brain and mass in left side of brain.
They kept me in hospital, got 3 pills of steroids for swelling, and within 2 days felt fine. However they wanted to investigate what that mass is and what is causing the swelling.
I was signed to general medicine ward, and it took them a week to get my MRI done, which meant that in their initial MDT they only saw the CT scans, thus no decision was given. Second time week no tests were done, but on MDT they said that they want lumbo puncture to be done ( which is quite weird since they said that nothing was found in the rest of the body through scans), was supposed to get that done today, but nothing.. they said it will take a sound a week for results which means the results will miss MDT next week, thus probably no more test for another two weeks?
Only after 2 weeks I was asked whether o have some marks that could lead to skin cancer, but nothing was ever checked! I am getting so frustrated, I know it’s serious because I can feel that I am getting weaker and more tired, I am forgetting names and random details, I would think that time is of the essence here yet nothing is being done.
Please advise is there anything I can do to fast track this?
Should I try getting in touch to hospitals in Germany once I receive my scans ?
Thank you!

My 3 year old son was diagnosed with a Pilocytic Astrocytoma on his brain stem earlier this summer and has since had a partial resection, regrowth, a ventriculostomy (which failed), another ventriculostomy to try and relieve fluid build up and has started on Vinblastine Chemotherapy weekly to try and stop the growth of his tumor.

We live in the US (TX) but have a lot of family overseas and have planned a trip to visit them over the holidays. His oncologist has been encouraging and has told us that missing a couple of doses is ok. However, given how the last 4 months of our life has been, I'm relatively nervous. I'm particularly nervous about being very far away from a well equipped children's hospital (it will take 24 hours to get back to the US on an emergency basis). On the other hand, a number of my relatives are physicians there and we will have access to some of the better children's hospitals in India.

Those of you who have children undergoing active chemotherapy for a brain tumor, did you ever travel? what was your experience like?

Wife’s potassium is high on Vora - have to redo bloodwork this week to evaluate if she will be able to stay on it. Anyone else run into this specifically with potassium levels?

Hey all - looking for some opinions/experiences on vorasidenib vs radiotherapy.

My husband (35) has a grade 2 oligodendroglioma, diagnosed about 4.5 years ago, successful surgery 3 years ago and stable up until now. On high dose of anti seizure meds, hasn't had a seizure since surgery.

Initially we were told the most recent mri was clear, some change that they thought was post operative change. But after reviewing they've decided that actually it looks like a small amount of growth and want to do something.

Surgery not an option currently, and they've said it is a very small change. In an area where radiotherapy wouldn't affect memory or any important function apparently. It is quite far back and advised that radiotherapy could 'tickle' the brain stem and cause nausea, but they've not been much more specific about location.

His options are are vorasidenib or radiotherapy followed by chemotherapy. We're in the UK and vorasidenib is quite new, and they've said that where we are, there's no one under their care on it. They recommend radiotherapy as its what they've always done and know it works. But I think their lack of knowledge might be influencing their recommendation.

Just looking to see what others have done?

We have two children under 3, and my husband works full time in construction which he wants to be able to do for as long as is possible. We are also getting a second opinion.

Thank you!

Please read!
Hello I’m wondering if anyone had or is dealing with what I’ve been going through. I’m 20 F And around February I noticed I was having headaches, some severe but it would come and go. Around August they became more frequent and It took forever to see a neurologist. I saw one at the end of September and they thought I had IIH because of how the headaches or “pressure” wouldn’t resolve when laying down. I was sent for a MRI and Spinal tap. My opening pressure for the spinal tap was 17. This didn’t fall into extreme IIH ranges and my neuro didn’t bring up any further talk of IIH. Now, I did get my mri results back and it showed I had a 3.3 x 2.1 x 3.7 mm tiny hypoenhancing nodular focus along the posterior right side of the pituitary image. They recommended another imaging focusing on the pituitary region. I just want to know if anyone struggles with headaches/pressure? What resolved it? Is the size of this just going to be monitored? I’m not asking for a diagnosis I’m just asking for community and people’s own stories. I’m young and this feels very alone in the fact some days are okay and some days I just don’t know if I’m gonna feel normal ever again.

[F33 - Right Temporal Grade 3 Oligodendroglioma resected in February of 2022]

Thanks to this sub, in the past few days I finally learned that there are alternative drugs to Keppra! I've never liked being on Keppra, it makes me feel so "muted" as a person. After being put on it in December of 2021, I still to this day get tired after I've taken it and feel hazy for the first few hours.

I also have always felt like I'm less patient with my family and friends since being put on it. I don't lash out in aggressive ways, but I feel more annoyed by people, and my internal fuse is shorter, which makes me feel really bad because I love everyone and have always been told I am "so patient and caring".

Now that I'm aware it wasn't just me, and there are other options, I would like to potentially bring up switching drugs at my next MRI which is at the beginning of November (I was just put on a 6 month schedule, yay!).

If you have previously been on Keppra, but switched to a different drug, would you mind sharing your stories/advice? I'd love to know how Keppra made you feel, what you switched to and how you feel now?

Thank you 💚

A few days ago, my 28-year-old brother was diagnosed with a brain tumor. He has two very young children, and until recently, he was completely healthy. No headaches, no obvious symptoms, nothing. One day, his face suddenly started drooping on one side, so he went to the hospital. That's when everything changed.

He is currently being treated at Cho Ray Hospital, one of the major hospitals in Vietnam.

According to the doctors, the tumor is very large and located deep inside his brain, making it extremely difficult and dangerous to operate on.

The doctors have told our family that we essentially have two options:

1. Don't operate: The tumor remains inside his brain, like a ticking time bomb. We don't know when his condition might suddenly deteriorate. The doctors have suggested that he may only have a few months left without treatment.

2. Undergo surgery: Because of the tumor's size and location, the doctors have warned us that there is a very high risk of paralysis and potentially other severe neurological complications.

What makes this even more frustrating is that we were told the hospital's neuronavigation equipment, which would be used to guide a brain biopsy, is broken. Because of this, they cannot currently perform the planned needle biopsy using that equipment.

Seriously, how is a family supposed to process something like this?

We haven't even been able to get a definitive diagnosis through a biopsy to determine exactly what type of tumor he has or how aggressive it is, yet we're already facing an almost impossible decision.

I would really appreciate advice from anyone who has been through something similar, especially neurosurgeons, neurologists, or families of brain tumor patients.

I understand nobody on Reddit can diagnose him or tell us what to do. I'm just desperately trying to understand whether these really are our only two options.

He's only 28. He has two little children waiting for him at home. I don't want our family to make an irreversible decision without exploring every reasonable possibility.

I'm 37, diagnosed with a grade 2 oligodendroglioma in 2020. It's IDH1-mutant and 1p/19q-codeleted.

I had surgery at Mayo in 2020, and I've been on vorasidenib through the INDIGO clinical trial since early 2022. My MRIs were considered relatively stable for years, but my doctors are now seeing slow progression, particularly over the last couple of scans.

The biggest issue is the location. My tumor involves my left hippocampus and nearby left temporal structures involved in verbal memory. Just due to work and my wife/kids preserving those abilities is extremely important to me.

I've been getting opinions from neuro-oncologists and neurosurgeons, including Mayo and Michigan, and I'm trying to work through the next steps. Also going to Cleveland clinic and maybe Northwestern for a few more opinions.

Here are the options we're discussing:

1. Try safusidenib (Safu) through a clinical trial.

This is another IDH1 inhibitor being studied in patients whose tumors have progressed on vorasidenib. Some of my doctors think it's worth trying before moving to more aggressive treatment. I know there's no guarantee it will work after another IDH inhibitor. However, I found this trial so it's my idea and concerned that the docs may be biased since I generally volunteer for being researched.

1. Another surgery to remove as much tumor as safely possible.

My neurosurgeon believes he could remove a substantial amount of the remaining tumor, obtain updated pathology, and potentially place an Ommaya reservoir for future monitoring.

However, he has also been very clear that removing the hippocampal tumor would almost certainly worsen my verbal memory. That's a major concern for me. And both Neuro oncologists have been against this.

1. A smaller biopsy followed by radiation and chemotherapy.

This would provide updated pathology without attempting a large resection of the hippocampus. It would still involve procedural risks, and radiation itself could affect memory.

1. Radiation and chemotherapy without another biopsy or major surgery.

This is an option I'm seriously thinking about. I already have a confirmed oligodendroglioma diagnosis from 2020. Part of me wonders whether it would be better to move directly to established treatment rather than risk additional damage from another operation.

I understand that updated pathology could reveal changes in tumor grade or biology, so I know there are tradeoffs.

We're also discussing an amino-acid PET scan, potentially FET-PET at Mayo, to better characterize the tumor and identify more active areas.

Right now, my thinking is to try Safu first if I'm eligible, but if it doesn't work, I'm questioning whether radiation/chemo should come before another biopsy or resection.

I'd really appreciate hearing from people who have faced something similar:

• Has anyone had a glioma involving the left hippocampus or dominant temporal lobe?
• If you had surgery in that area, what happened to your verbal memory, word recall, and day-to-day cognitive function?
• Has anyone chosen radiation and chemotherapy instead of another resection because of the tumor's location?
• Did anyone receive radiation without a repeat biopsy after documented progression?
• Has anyone tried another IDH inhibitor after vorasidenib, or had experience with amino-acid PET imaging?

I'm not looking for anyone to be an expert, I'm trying to understand what the actual lived experience looks like, especially when the potential cost of treatment is memory and cognitive function.

Thanks to anyone willing to share their experience.

Had (F/42) full resection of right frontal astrocytoma in May. Dr. only recently read labs from July. Referred me to radiation oncologist. My astrocytoma was asymptomatic, and only discovered while monitoring a benign prolactinoma. No complications or symptoms after May’s craniotomy. I’m currently symptom and tumor free. Would be very grateful to hear others’ radiation experiences, and why you chose to do it or not. Thank you!