Posts by Rebecca Alvarez86

Hey everyone, sending strength to those dealing with this...
I need some input on what happens when someone refuses monotherapy—specifically a patient with glioblastoma. The plan was a cycle of 5 days of Temozolomid followed by a 23-day break. But after just one day, they’ve completely bailed because the vomiting and side effects are too much. They refuse to take another dose. To make matters worse, they’ve already lost control of their right arm and leg—they’re basically bedridden at this point.
Should we be bracing for a sudden, sharp decline?

Angela Wright said:Look, at the end of the day, all these newly discovered subtypes don't actually change much—everyone is still getting treated the exact same way. It’s surgery when they can pull it off, radiation, and Temodal. The only real difference might be how fast the disease progresses, but that's about it.
Look, we’re dealing with one of the most insidious, hopeless diagnoses out there—something most of you have probably already realized. For those who actually survive the longest, it usually means having access to a healthcare system that monitors them every three months with brain MRIs; the second they see even a tiny sign of a recurrence, they go straight in for surgery. People have tried all sorts of experimental drugs, but honestly? Nothing seems to come close to the results we get from just sticking with Temodal and surgical intervention. I kept holding out hope that immunotherapy or stem cell research would finally move the needle, but since my mom first got sick back in 2005, I haven't seen a single real breakthrough. Nothing. 😢
I want to wish you guys all the strength in the world. If I can give you one piece of advice—and I mean this sincerely—it’s to just live in the here and now. Don't get ahead of yourself. Don't stress about what you're cooking for lunch tomorrow or next week. Just take things as they come and try to stay as calm as possible while the situation unfolds. div>

Thanks so much for the reply. Honestly, we’ve realized just how sneaky this disease really is—everything flipped upside down practically overnight. It went from a sudden seizure straight to this diagnosis. He had surgery, and they managed to remove as much as they possibly could, but what’s left is tough because it’s buried deep, right in the center. They couldn't risk touching more and potentially taking everything away from him. Even though the surgery is over, he can't move or even lift himself up right now—his right leg is giving him a hard time. A physical therapist is working with him, and now we're just waiting to start therapy.

hello everyone. Sending a ton of strength to anyone out there dealing with a loved one facing illness... I wanted to jump in here and ask about some test results regarding a family member... brain tumor... glioblastoma WHO Grade 4: glioblastoma IDH1wt
Brain CT, left frontal lobe
Is this the aggressive type? If anyone could elaborate a bit more, I’d really appreciate it..

Sean Barrett35 said:Are you seeing double or just seeing things?
Anything moving shouldn't be a "major" issue.
As long as your entire field of vision is intact—it’s fine.
I know they do eye exams without an appointment at Mayo Clinic if you're worried.

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Classic procedure. Cerclage, subretinal puncture, exocryopexia... ablation with rupture and macula off. I'm left with this distorted image in that eye—it's been floating right in front of me for about 15 days now.😵
Mayo Clinic isn't exactly close for me since I'm out in California... even though I already had surgery.

Thanks, Sean Barrett35... but what about this black smoke—sort of like little flies—forming a ring, or more like a "C" shape in my field of vision? It moves whenever I move my eye. (Just a heads up, I've had eye surgery before—retinal ablation.) Is that something I should be worried about?

Quick question... has anyone actually gone through re-injury?
What kind of symptoms are we talking about here?

Sean Barrett35 said:My take? It’s staying that way. Once that macula detaches, there’s no going back...

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It certainly looks that way... though I was told there might be a slim chance things could improve slightly over the next few months.
During the exam, the doctor also mentioned my retina is paper-thin. She basically told me I need to take it seriously when they say "don't lift heavy objects"—regardless of the fact that I feel fine and honestly think I can handle it. Has anyone else dealt with this kind of restriction where you're told to watch your physical limits long-term?

So, you're telling me I might be stuck with this distorted vision😲? There’s really nothing else that can be done? Maybe some kind of follow-up surgery could fix it?

northernsurfer64 said:I had the exact same procedure done late last August. My prescription actually went up—and it’s still climbing because I developed cataracts, so now I’m looking at another surgery soon. Luckily, I can see lines relatively clearly now, even though they looked totally distorted to me at first... You might have some astigmatism...

My doctor told me it would be like this for a little while... but it's been four months already. And honestly, the whole reason I went to the doctor in the first place was because my vision was so warped that they flagged it as an emergency surgery. Now, when I try the Amsler test, the lines look wavy as hell..

Hey everyone😉
I need some insight regarding retinal ablation. I had surgery four months ago—it was an ablation with a rupture and a detached macula—and I’ve always been nearsighted at -7. Based on what happened, my prescription on that eye should jump by about -2, but I haven't even gone in for the actual refraction test yet. What's really eating at me, though, is the distorted vision. Lines look wavy and all crooked... can they even get an accurate prescription reading like this? And is there any chance the detachment happened again?