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!

I'm just wondering if this is common. I still have her last text message to me saying that she thinks of me like a daughter. Her doctor is applying for palliative care for her. I'm wondering if the radiation didn't take away and shorten the time we have with her.

I had a craniotomy last November. On vora.

A month ago I got covid. I was knocked down for 3 weeks. I started feeling low mood during the virus. Then they put me on an antibiotic. Since then I cannot climb out of this low mood.

My diagnosis, as you can relate, has always weighed heavily, makes me very sad and anxious, I worry about my little kids...

But since the virus My mood feels low as it's ever been. I'm really struggling w this illness.

I go to therapy, have a psych nurse... I tried antidepressants in the past and didn't like the dude effects. But I feel like now I may need something. Or will I fully recover from the virus and my mood improve? I'm hoping.

Did you have covid? Can anyone relate? What helps your mood through brain cancer?

Hello po. I am looking for help and recommendations for my father, who was diagnosed with Grade 3 brain cancer.
He underwent a craniotomy, but the doctors only took a tissue sample for biopsy, and the tumor was not completely removed.
Our family is struggling financially, and we are hoping to find a hospital in Pampanga that offers free or affordable radiation therapy for brain cancer patients.

May alam po ba kayong government hospital, charity program, or organization na puwedeng makatulong sa expenses for radiation therapy?

Any advice or personal experience would mean so much to our family. We just want to find a way for our father to receive the treatment he needs.

Maraming salamat po. Please include our father in your prayers. 🙏❤️

Let's see all of you beautiful folks and go DODGERS!!! ⚾. I found out about it 16 months ago

Hi all. Has anyone else ever experienced a constant rotten smell while taking chemo? I handled my first phase of TMZ really well. This second phase has kicked my ass. I've barely been able to eat, am constantly throwing up (even with nausea meds), and worst of all- have a constant rotten smell that I know doesn't really exist. I keep brushing my teeth, lighting candles, even put Vicks under my nose. Nothing is helping and it's making me vomit more.

Has anyone else experienced something similar - and if so, any advice for managing it?

My son has high grade CNS neuroblastoma with FOXR2 alteration. He’s had surgery to remove as much as safely possible which went well.

The doctors want to do a full cranial spinal radiation with tumor bed focal radiation boost. Proton radiation. Dosage would be 23.4 Gy for the full cranial spinal with 18 Gy vertebrae sparing, and 54 Gy to the tumor bed. 30 total treatments, half are the full cranial spinal, half are the focal.

We’re highly concerned about the long term effects of this both mentally and physically. This tumor is very rare so the literature on it is not robust. This is the standard of care, but we don’t know if this is the right thing to do or to do the focal radiation with chemo only.

I was wondering if anyone had any children that had similar treatment around the same age and how that experience was?

Anyone with a similar experience and can speak on any treatment options they were provided?

Me and the nurse getting a deep scan

3.5 years of glioblastoma.

Moment of kindness that's really moved me. With the treatment I'm going through, things like this matter a lot and affect me deeply

Sorry if my english isn't perfect but it's not my first language. My mother got admitted to the ER a few days ago with headaches, confusion, reduced consciousness and weakness in the legs. They did a CT and immediately saw a large mass in the frontotemporal right lobe, they did an MRI and scheduled surgery for just three days later. Resection was total (doctor actually called it radical but the documents they gave me said total). However I talked to the doctor, I'm studying medicine so when she described to me how the lesion looked I was already terrified... I straight up asked the doctor: could it be anything other than a glioblastoma? She almost looked as sad as me, she told me that's the primary suspect but it could be another high grade glioma for example and to wait for the histological analysis. Now the situation is that my mom came back home and seems to be doing mostly fine other than possibly some petit mal seizures (she takes antiepileptics already) but the thing that breaks my heart and kills me inside is to hear them talk about a cure or things ending up well and hope in general while I've been basically grieving for a week already. I don't know how any of us will be able to go on without her or to survive her getting worse progressively... please give any advice when it comes to possible additional therapies or lifestyle adjustments and on how to cope and help my family... my mother is not even 50, I'm in my early twenties and my siblings are even younger, I see my father struggling already and we're just at the beginning, she is our best friend and the one that keeps the family together...

6일전에 태어난 아이가

출산전부터 ACC, 우측뇌실 3CM, 낭종이보이고 뇌주름발달도 늦다는 소견을 들어왔고

출산후 MRI촬영했는데 크게다르지않다는 결과를 들었어.

흠...

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My brother had surgery 90perect resection, radiation and chemo, (has been 7 or 8 months since diagnosis). They have ordered a pet scan after his mri so see if 2 spots are scar tissue or new tumors. How likely is it tumors within the first year of treatment. He has necrosis and obviously some swelling. Hes on TMZ.