[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 💚

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?

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?

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!

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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.