Update to yesterday’s post. Got the MRI report.
Looks like IDH wildtype grade 4. Isolated to L frontal lobe.
They’re doing more CT scans to rule out any other tumors- chest abdomen etc. but they don’t think there will be more.
No further seizures.
Planning for resection in 5 days. That feels like forever away.
It’s ironic, I hated seeing these posts when I was looking for help and advice through my mothers glioblastoma journey. We had Hell of a ride, 2 years and 9 months. She passed away 22 September, the day after my 27th birthday.
When the doctors told us there was nothing else to do, I knew this time that it was over. She was tired and weak. The last times we flew abroad, did treatment in turkey and Germany, and we thought it would be all right.
I feel numb. I feel weird that I don’t cry that much. I just feel severely depressed. She was my best friend. And I hate this fucking disease. I can’t believe I’m motherless. I think I’m in deep denial. I’m so sorry for anyone going through this. Good luck on your journeys. I have a lot of material and if anyone needs help, I will absolutely help.
I’m currently the primary caregiver for someone with glioblastoma. I’m looking for a patient facing “CRM” that would help me track multiple opportunities (clinical) trials. Organizations and contacts are related to the research entities that are performing clinical trials.
Interactions are primarily with emails, but voice and especially meeting transcription are extremely important to document inclusion, exclusion, or follow-ups for required testing.
The goal is not increasing sales, but extending life.
Any thoughts to something that might fit the bill, or is this something that I need to vibe code using Claude?
Hello all, never thought I'd be here but here I am. My mom was diagnosed three weeks ago with a glio, it was in the cavity of her brain in the very middle, 3cm by 4.1cm, looked like an egg in the middle of her head. She's a 70yo female, wasn't in the best shape before all this happened, she has type 2 diabetes, hypertension, arthritis. Two weeks ago she had a craniotomy, one week after that a shunt surgery. She is not recovering very well, still can barely talk, she has expressive aphasia and weakness on the right side. She still can't walk, can't hardly stand without assistance. She fluctuates wildly even throughout the day. Right now the Dr says she is not a candidate for chemo and won't be unless she improves.
I guess I'm posting to see if anyone has had similar experiences. We've never had anything like this happen to our family. The first 3-4 days I couldn't stop crying, I've spent every day at the hospital since then, lost ten pounds, feel like I'm going crazy. I guess my biggest fear right now is that she never fully recover and is trapped in her body. If she can't improve enough to get chemo/radiation I fear we won't have her for long. I am so scared of losing her, I just want a little more time so we can make a few more memories before she goes. I wouldn't wish this on anyone.
Edit to add tumor was located specifically in the left lateral ventricle
My dad has glioblastoma.. recently he has been trying to fix a lot of things that aren't broken (such as ripping apart remotes and attempting to take apart appliances). He seems to get extremely fixated on these things once he starts and has always been really handy so I understand why he is tried to do this, but he gets really aggressive and upset if you try to stop him.
Does anyone have any suggestions on how to distract him from things when he fixates on them or tactics to prevent him from doing this all together? I am struggling with just letting him destroy things though I know I cannot logic with him that these things work, he just no longer can process how to use them :/
My mom finished her second round of 5/24 or whatever it’s called yesterday and she still feels very sick. She is on the highest dose of the chemo. I was wondering how long she will stay feeling sick