u/ColdState777

Hello everybody,
I recently underwent a craniotomy - 4 months post op-
I actually got some harsh news last week with the latest MRI review.
there’s been some growth venturing into a different part of the brain. I’m starting a new targeted brain tumor drug called Vorasidenib , for anybody that doesn’t know what that is - it’s a daily pill - designed to delay growth or even shrinkage As for side effects, it includes nausea, headaches but mainly, it’s a killer on my liver, so will not be drinking at all and infertility.
For the whole duration of time I’m on the meds, I’ll also be having an MRI every 3 months to keep a close eye on the tumour.
Should be starting the medication late this week/early next week.

Has anybody got any advice or some insight on this.

Thanks,
CS

Hello everybody, as the title says I’ve had my second craniotomy and my 26th birthday was 2 weeks post op.
My first surgery was when I was 21 y/o, my only symptom was seizures as a result of that I had an upper body MRI while they were trying to figure out what was going on.

My GP called me up a couple hours after the MRI and when I was face to face with the Dr that afternoon, that’s where I received the benign Oligodendroglioma diagnosis on my front left lobe that would inevitably change my life forever.

I ended up being put to sleep for the first operation, woke up unable to speak. It was a grind, speech therapy twice a week, I wasn’t able to string a sentence together for 8 weeks. It was just independent rehab really, re learning the skills to write and speak was very very hard.

Don’t get me wrong, I’m very grateful for making a full recovery and being able to have a social life and back to driving. Very grateful for my medical team, ive moved to Melbourne since my first one and just the amount of appointments and pre-scans and the whole surgery team calling me up one by one gave me an immense amount of confidence.

I didn’t have any of that before my first op.

Over the last 3 months I’ve had a very difficult time processing my emotions and just in general what I’ve been through, especially being so young and what my future looks like, every 6 months another MRI and the fact that in hopefully minimum 5/6 years it’ll grow back and we have to go through this over again.

I don’t even know where to start explaining it all, I’m keeping it all inside right now and I know I shouldn’t and I tell everybody to talk about their emotions , I need to start practicing what I preach. I’m taking the right steps signed up for a tumour support group and going to see a psychologist over the next couple weeks.

I just wanted to vent somewhere and see if people could relate and by the looks of it, they very much can x

Thanks for reading, CS777

Hello everybody, as the title says I’ve had my second craniotomy and my 26th birthday was 2 weeks post op.
My first surgery was when I was 21 y/o, my only symptom was seizures as a result of that I had an upper body MRI while they were trying to figure out what was going on.

My GP called me up a couple hours after the MRI and when I was face to face with the Dr that afternoon, that’s where I received the benign Oligodendroglioma diagnosis on my front left lobe that would inevitably change my life forever.

I ended up being put to sleep for the first operation, woke up unable to speak. It was a grind, speech therapy twice a week, I wasn’t able to string a sentence together for 8 weeks. It was just independent rehab really, re learning the skills to write and speak was very very hard.

Don’t get me wrong, I’m very grateful for making a full recovery and being able to have a social life and back to driving. Very grateful for my medical team, ive moved to Melbourne since my first one and just the amount of appointments and pre-scans and the whole surgery team calling me up one by one gave me an immense amount of confidence.

I didn’t have any of that before my first op.

Over the last 3 months I’ve had a very difficult time processing my emotions and just in general what I’ve been through, especially being so young and what my future looks like, every 6 months another MRI and the fact that in hopefully minimum 5/6 years it’ll grow back and we have to go through this over again.

I don’t even know where to start explaining it all, I’m keeping it all inside right now and I know I shouldn’t and I tell everybody to talk about their emotions , I need to start practicing what I preach. I’m taking the right steps signed up for a tumour support group and going to see a psychologist over the next couple weeks.

I just wanted to vent somewhere and see if people could relate and by the looks of it, they very much can x

Thanks for reading, CS777