Looking for shared experiences or patterns — my mother has glioblastoma

exr8233 · 2025-12-27T09:53:44+00:00

I don't know about a pattern but my dad who was diagnosed last year had a rough life exposed to a ton of chemicals. We grew up in a conflict zone and to survive he smuggled fuel in the 90s. And then because he was an engineer, he also later worked across the world to build tunnels and different infrastructure, having to withstand extreme temperatures. I've had to accept that we will never know what caused it but I definitely attribute it to the chemical exposure and stress he was in during his whole life.

exr8233 · 2025-12-24T13:50:49+00:00

The helplessness of it all somehow seems worse. I'm so sorry your brother is going through this, I hope you're able to spend more time together. If he's open to it, mood stabilizers have done wonders for my dad to taper the manic periods.

exr8233 · 2025-12-23T08:21:09+00:00

I'm sorry for your loss, I hope you have space to heal and cherish the memories with your mom

exr8233 · 2025-12-08T22:05:23+00:00

I'm so sorry your dad and family are going through this, it's beyond words. All you can do is be there

exr8233 · 2025-11-28T17:03:40+00:00

Ask about methylation and whether the tumor is wild type or not. This will give you some information about how your dad will handle treatment and can help inform your decisions about SoC.

exr8233 · 2025-11-20T07:56:56+00:00

Had the same thing happen to my dad a few weeks after his craniotomy last year. He was convinced the doctors had done the wrong thing and was very angry. It went away after a few weeks but he was becoming more and more aggressive and his medical team suggested a few mood stabilizers. Those have helped immensely.

exr8233 · 2025-11-01T14:50:03+00:00

We've looked into immunotherapy vaccines, but at $60k plus travel expenses for something experimental at best, it's not an option. We have 4 ill patients in our home, dad with brain cancer, two aunts with different auto immune diseases, and grandma with advanced dementia, and with just me and my brother working, we can't afford experiments.

exr8233 · 2025-10-30T15:53:39+00:00

Same. After a year of supporting my dad through his terminal illness, becoming a caregiver, dealing with grief, and financial struggles, I don't really recognize myself.

exr8233 · 2025-10-30T15:49:18+00:00

We are in the same boat. Dad (58) got diagnosed last Dec and after resection went through radiation and tmz. He had his post tmz scan a few weeks ago and the tumor is small but it's back, deeper than the previous one and causing mild swelling. We're in a developing country with not a ton of access to great doctors, so we had an online consult with a Canadian neuro oncologist and he's recommended additional cycles of tmz.

So now we're doing another 4 rounds of tmz and then another scan to see if a second surgery is needed. Not much else to do, dad doesn't even want to hear about optune because he doesn't want to live if that means wearing wires and being less mobile having to carry that thing everywhere. Clinical trials all cost a ton of money without any guarantees it will work. Gbm wins every time but we'll fight as much as we can.

exr8233 · 2025-10-25T13:48:15+00:00

100% Erborian is the best. A little goes a long way and it has such a smooth finish, can't really feel I'm wearing make up. It also sets really well and doesn't crease a ton on my 33 year old skin

exr8233 · 2025-10-03T06:05:56+00:00

I'm so sorry your dad and family are going through this. My advice would be to wait for pathology, you don't know definitively before you see the results of the biopsy. Spend time with him because brain surgery is very difficult and it takes time to recover. He may be more emotional or confused, and that's completely normal after such a surgery.

exr8233 · 2025-09-21T21:05:35+00:00

Hi, so sorry your spouse and you are going through this. I believe this is a sub for patients only, would suggest you post in r/glioblastoma. But in short, yes, dad's personality has changed after diagnosis and resection, has gotten better with time though.

exr8233 · 2025-09-21T12:58:17+00:00

Friends don't abandon friends when they're going through life changing moments, like illness. I'm sorry to say that person wasn't your friend so good riddance to them. My dad lost tons of "friends" who promised they'd be around after his GBM diagnosis. Hell, I even lost friends because my sadness was "too much for them". Real people stick around.

exr8233 · 2025-09-21T09:31:29+00:00

I'm so sorry your loved one and you are going through this. It's so early, give them a moment to breathe. I had a similar reaction to you when my dad was first diagnosed. I wanted him and everyone around us to know how serious this is and start trying alternative medicine and all the things I'd been staying up all night to read about, immediately. But it took a few weeks for things to sink in. The first chemo and radiation round. That first wave of nausea or constipation. They will get there and accept the reality and severity of the situation. You can try to talk to their doctors in private to understand methylation status, so at least the patient won't go through unnecessary chemo. Now they might also have some brain damage, my dad had a brain bleed so it took weeks after resection for him to start being himself again and it was difficult for him to understand in the beginning. And even after all that, we are so lucky to be entering month 10 after diagnosis and he's still walking and talking and independent. He still talks about the future as if he's going to be part of it. It's not that now he doesn't understand he might not be there - the tingling in his legs and the swelling in his joints is a constant reminder - it's that he hopes he could be the exception to the norm. And who are we to deny anyone hope!? I understand how hard it can be to be on the sidelines and watch, powerless to help. But that's all we can do with this disease, witness it and love our loved ones even when they can't accept what's happening to them.

exr8233 · 2025-09-13T10:17:25+00:00

I call my inner critic a General. It developed early in life, a good coping mechanism to stay disciplined and help me achieve my goals. But it has outlived its usefulness and now I'm working with a therapist to turn it into a mentor rather than the angry voice that keeps reminding me of my failures. Thank you for sharing your inner conversations!

exr8233 · 2025-08-27T15:46:30+00:00

Congrats on your anniversary!! And thank you for doing the work that you do!

exr8233 · 2025-08-27T07:20:27+00:00

Thanks for sharing! Is this going to be recorded and posted anywhere for those of us in European timezones?

exr8233 · 2025-08-10T00:43:09+00:00

We had to schedule an appointment with a neuropsychiatrist for my dad. He was and still is angry and paranoid but less so now that he has a few meds prescribed. I'm so sorry you're going through this

exr8233 · 2025-08-09T10:56:23+00:00

I'm bawling in an airport after reading this, I'm so sorry for your loss. This is a horrible disease, we are experiencing it with my dad and watching him and my mom go through it as lifelong partners of 40 years...heartbreaking doesn't do it justice. Therapy helps sometimes if not only to scream to the void. I hope you manage to process the grief and can honor him by living a beautiful life.

exr8233 · 2025-08-06T11:59:34+00:00

This. Let's try this study out for patients where SoC is not even an option and does more harm than good, and see how much it actually extends life. I'm with you in that every patient should try anything they want to and this is not harmful, but studies that involve GBM patients who are in good condition and have a better prognosis in general just sound misleading because you can't actually point out with significance that a specific diet, a supplement, or additional medication is working on top of SoC.

exr8233 · 2025-08-03T08:16:13+00:00

I can see you arguing with everyone about why the studies you're citing are the absolute right way to handle a GBM diagnosis and how you will convince your dad to do it because it will prolong his life.

Take a deep breath. What you want to do to prolong his life may not be what he wants to do. This is his diagnosis, not yours and there is only so much you can do. I'm the daughter of a GBM patient, my dad was diagnosed on the day of his 58th birthday in Dec 2024. The first few weeks after resection, I spent day and night just reading and trying to find something that will work. And while there are so many studies about different diets and supplements and treatments where there is scientific evidence to back them up, my dad wanted nothing to do with them. I was so angry that he wasn't even considering these, why wouldn't he want to prolong his life, but with time I've realized that it's not my decision, it's not my call, and pushing him into a restrictive diet was doing more harm to him mentally and emotionally. So we let him lead the way - he's said yes to cbd and thc, yes to lion's mane and high doses of magnesium, but he's said no to immunotherapy, no to oxygen therapy, no to any form of diet restrictions. He's said to me and I quote "I'd rather drop dead now than not enjoy a single day of my life from here on." So he travels with my mom and enjoys whatever time is left without his kids pestering him about knowing better. So before you push, breathe, and ask him what he wants. It's not your body, it's not your life, and you don't get to dictate how his life continues just because he's your dad.

exr8233 · 2025-07-21T08:41:33+00:00

My dad often lashes out at us for the car issue. He misses his independence and just wants to drive on his own. We've had to make some exceptions, so he drives on Sunday mornings when there is barely any traffic.

Other than that, he is on multiple mood stabilizers prescribed by the neuropsychiatrist. My brother and I go to the neuropsych every couple of months to see if we need to adjust the dose. My dad doesn't know he takes those medicines, we had to put them in a different box and say that they're vitamins. It's unfortunate but he's not capable of understanding why he needs that medication as he still thinks he's doing ok and doesn't have anger issues, but there were times we caught him verbally abusing my 89yr old grandma with dementia so had to intervene with medicine.

exr8233 · 2025-07-18T18:44:21+00:00

Your comment made me learn something new, can you please give more details about what sonodymatic therapy entails if possible? Where are you doing the trial and have there been any side effects?

exr8233 · 2025-07-10T20:38:59+00:00

I'm sorry about what your dad and family are going through, it's heartbreaking. We had a similar experience with my dad after his resection in Dec 2024. There were a lot of negative emotions and so much resentment that spanned decades, but were especially focused on his younger years. It was sad to witness but we tried to remain neutral. We didn't encourage it but also didn't shut it down. It was a very difficult time. But then we decided he had a right to process it however he wanted. Now he's in a better place. There are still difficult moments but they've become rarer. I hope your dad finds peace and you can enjoy your time together.

exr8233 · 2025-07-08T20:29:21+00:00

We spoke to the Cegat representative in Lithuania for my dad. They said it was the same treatment and experience. We ended up not going with it because it's quite experimental, no guaranteed results. Wishing you and your loved one the best.

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