Glioma Puns

Hi there, 36F who underwent an MRI of the brain for increased headaches (long time migraine sufferer). 2021 MRI found a white spot that has slightly (almost insignificantly) grown since another MRI in 2015.

Dana Farber doc cannot determine definitively if it’s indeed a glioma or an “unidentified bright object”, possibly from having migraines.

My question—he recommends resection since a glioma can’t be out ruled. Has anyone experienced this? I haven’t had luck finding this instance via Google or any other forum and just curious.

Also, if you had a low grade glioma, how long was your hospital stay?

Has anyone heard anything about getting an Optune device for a grade 2/3 glioma? Or is it for GBM only?

My fiancée was diagnosed with grade II, IDH-mutant diffuse astrocytoma. She had a gross-total resection last June and we were waiting for her to meet the eligibility criteria of being >12 months post surgery before enrolling her in the Indigo trial. Unfortunately the trial has filled up early and thus is off the table for us. Our trial coordinator doesn't know of any other trials for low-grade gliomas...but maybe you do?

I'm sorry. I'm having trouble processing this and trying to articulate it. My dad has been diagnosed with Glioma - or Glioblastoma? My mom said both so I'm not sure if they're the same? He had a few spots on his brain that they found in an MRI and they got him in for surgery. I thought it was just going to be a biopsy but they fully removed two of the spots. That's what the doctor said. My mom also explained that the doctor seemed optimistic because they found these earlier than usual. I think they're smaller or there are fewer?

I'm sorry for not explaining this better - I'm just looking for some advice (and selfishly, comfort) on how to move forward? Come to terms? Be a supportive daughter? I don't know. I feel like I'm going to be sick.

I guess that I don’t really know what that means. It took 4.5 weeks for the pathology to come back so we’ve had an appointment with his neuro oncologist and his radiation oncologist already but everybody was just saying that they won’t know for sure until pathology comes back.

The treatment is the same either way, they all said that and his neurosurgeon said that today.

Studies online say like 12 months??

Anybody know what questions we should be asking?? I don’t even know where to start.

Good evening, all!

I've been plagued by one particular glioma under my right ring fingernail for some time. It's at a point where I'm going to have it removed. The tumor is small, but growing under the nail, the pressure is intense. (3mm). I've had tumors removed all over my body with no issues... but this one makes me wonder. What can I expect from recovery? It's minor - outpatient. But I need my hands for my job.

Best case scenario would be they remove the nail and it feels about like having an ingrown toenail fixed and then cutting out the tumor which should be painless. At least initially. ;-)

I have gliomas under at least three other fingernails, so I'm hoping this is the only one I need to get done.

Thanks in advance. :-)

Hi all. My 17 year old cousin who also has Asperger’s was just diagnosed with a brain tumor two days ago. He’s been taken to saint judes and is currently going through testing and is scheduled for surgery next week.

He is just the sweetest boy. We are very close with him and obviously very scared.

What does this mean for him? I tried to google it and got extremely unnerving life expectancy information. We are all praying but honestly are just beside ourselves.

Hi all- I know this is somewhat subjective but any recommendations here? I’ve read turmeric, dark leafy greens- is there anything brain specific that have helped people or is it a general healthy diet? Thank you!

Hi all, just joined this sub. Will be coming here for questions, support and learning from all your experiences!

My dad had some symptoms that seemed like a mild stroke and turns out he has 2.4x2.8 cm glioma in the left frontal lobe. So here we are.

Surgery is in two weeks and it will be biopsied then. He’s on dex until then and doing pretty well.

Right not I’m doing my research to know what to expect and anything that could help make him feel better through surgery and whatever treatments may have to come after. Supplements, diet, household things, emotional support, etc.

Thank you everyone!

In these anaesthetic weeks or days,

I must distinguish things

finally: stiff white sheets

from overcast; white coats

from shadows; the brain

from the not-brain. My reflection

strangely familiar in a glass

of cold water.

https://www.reddit.com/r/OCPoetry/comments/rff4n2/comment/hogjjgy/?utm_source=share&utm_medium=web2x&context=3

https://www.reddit.com/r/OCPoetry/comments/ri2xzy/comment/hov5f27/?utm_source=share&utm_medium=web2x&context=3

Hello, i’m reaching out to see if anyone has heard of ONC201 being used in brain stem glioma cases. My cousin was diagnosed with Astrocytoma Glioblastoma located in the brain stem. she is not undergoing conventional treatments like radiation and chemo. she had been using the Novocure Optune and taking rick simpson oil. pleas let me know if you hav e heard anything about similar cases. thank you

Hi guys, I had a second MRI for lesion in my right temporal lobe. Radiologist report says “suspect this is a low grade glioma” and the MDT says “cannot rule out low grade glioma”. I have found that the MDT is recommending I am scanned again in 9 months but everything I’ve read suggests early resection is key. So my question is:

1. To what extent can I challenge the MDT decision / be involved in advocating for surgery despite their decision?

I don’t want to go and be told to wait more. It’s messing up my work. I don’t think it’s a good idea. And I’m hoping that if I’m pro surgery then my neurosurgeon will allow that - how likely is that?

Given that everything in the brain is pretty much always “suspected” on imaging alone because diagnosis is only confirmed after resection and histology, I personally do not want to wait for this to transform, but I get the sense they are just not entirely sure it is LGG, so:

2. Did anyone here have surgery on something that was “suspected” with a differential? Or do they just avoid doing that because they don’t want to crack your head open for no reason?

Many thanks

Hello BC Family. I wish I had some good news to report for my husband. We finally received the pathology report & I’m glad my Oncologist isn’t a Vegas gambler as she thought initially thought he was a grade 2 🙄 pre-final pathology.

We have started today the first round of oral TMZ (2 capsules - one is 120 mg, the other is 40 mg) along with radiation treatment for the next 6 weeks. Thanks to reading other redditors experiences I have already gotten him an extra-soft toothbrush along with a tube of Cloyson toothpaste and a tube of Eucerin lotion to use for possible skin breakdown in the future.

After we complete Round 1 we will go into “maintenance” which means 1 complete weeks’ worth of TMZ each month for the 6-12 months. We will be doing oral chemo only along with weekly check in for Lab work & bi-monthly MRIs to see if the diffused tumor grows/changes.

He breezed through the radiation like a champ but I understand the fatigue (along other possible side effects) will kick in around 3-4 weeks.

We will also be visiting the holistic Dr next week to learn about alternative treatment such as massages and acupuncture to supplement the chemo/radiation. With that, am I missing else? I know constipation is a distinct possibility so I also have Miralax on stand-by.

Am I missing anything else? The schedule, right now. is kind of all over the place but locks in at a set 8:00 am appointment on week three. Thank you again for your insight and bless you all and your loved ones!

Not sure if it is ok to post about specific clinical trials, but I came across this one that looked interesting and was curious if anyone had any info or insights on it.

Candel

I'm 37, and for the 8 months or so I've been struggling with depression and anxiety, which ended up with me as an inpatient at the hospital for a short while. While I was there, the doctors gave me a couple of MRIs which found an "infiltrative lesion" in my left parietal lobe which is 4cm x 3.2 cm x 1.7 cm. They tell me this is most likely a low grade glioma, which could have been there for years. It's hard to say whether it was causing my mental symptoms, but the coincidence is striking.

After receiving the news, I thought about symptoms I've had recently, including double vision in one eye (which worsens at night) and nausea, plus some muscle weakness. My partner also reminded me that I've been experiencing migraines with vomiting, as well as a few bouts of vertigo.

I'm currently on a wait list about 6 weeks long for my country's public health system to see a neurosurgeon for their second opinion and to get a repeat MRI. I guess I'm a little bit daunted and in the dark about what to expect next, and would really like some guidance.

Would it be recommended to pay to see a private neurosurgeon sooner than 6 weeks? They said I should expect a biopsy and lumbar puncture next, but is cutting the fucker out a prudent step? I'm also a bit unclear on what makes a tumour inoperable.

Hi!

I am a 37 y old female with left parietal lobe low grade glioma (unconfirmed with biopsy but everything else is ruled out) and 1st, 2nd and 3rd opinion agree on this as diagnosis.

My worst symptom is medicine resistant seizures. I am awaiting EMU monitoring and hopefully will be a candidate for epilepsy surgery at Mayo. I am due to have a tumor resection in awake surgery as well - if safe. At least they will get biopsy for pathology confirmation.

Anyway, all this sounds like a lot for many in my family and my friends. I am looking for information in simple language. Preferably up to date that doesn’t list the prognosis as the avg for all gliomas or GBM as the natural progression… which is what a some top google results show :/

Articles, interviews, lectures, anything. Just nothing too technical jargony :)

Thanks :)

He used to have mild vertigo and sudden stop of breathing in night throughout the lockdown. We never suspected a thing because the symptoms were very very mild. But still we used to take him to local doctors in the mean time. An ENT doctor thought he probably has dirty ears so his ears were cleaned. But the vertigo did not go away. Later on we took him to a city and visited a popular ENT doctor. They decided to take MRI, but he could not lie down there because he couldn't maintain his balance. The doctor thought he has psychiatric problems or may be something else. We did a MRI with anaesthesia one week later to find out the brainstem glioma.

All the allopathic doctors have refused to help saying any treatment can not cure it and he has only 6 months to live. Radiation therapy will not cure it, surgeries may work but can cause paralysis. We later took him to a homeopathic doctor who assured us that he will live.

Sorry for any grammatical mistakes, English is not my native language.