Posts by goldencrane3

Is it actually possible to switch oncologists? And if so, what’s the move?

Angela Wright said:Not really—but honestly, based on what I went through, nothing actually turned out the way I imagined it would, from start to finish. Given everything we were dealing with, things ended up turning out as well as they possibly could have.
Look, the rough patch with my mom lasted a long time. She was basically bedridden for at least a year. The day she passed away didn't even feel different from any other day in that final year... she just kind of faded out...
...don't dwell on it—we're all here now, but tomorrow who knows? So many people came to say goodbye to my mom, only to pass away themselves before she did. That's just life. It’s totally normal to be excited about spending Christmas with your boyfriend; as for who will still be around by then, maybe none of us will, or maybe we'll all still be here.
Getting through the funeral was way easier than watching my mom go through two and a half years of agony. Life is hard; dying is the easy part.

Thanks. I try to stay positive, and I really do work at keeping it that way. For me, the absolute worst part was finding out about the diagnosis—everything after that felt easier, at least in my experience.
Tomorrow I'm heading over to help my sister and parents clear out the apartment—I can already see my dad stubbornly trying to get involved in every little thing. 🤣 Man, that stubbornness and persistence is probably what helped him fight the illness, too. I don't know if I would've been that strong if the same thing happened to me.

Angela Wright said:Oh honey, it’s honestly so different for everyone... for my mom, it lasted about two and a half years. By the time she hit the last dose of Temodal, she just couldn't get back up—the disease kept progressing and she slowly lost control over parts of her body. It started with her legs, then her arms, and eventually she couldn't speak at all. She could only move her eyes, though luckily she was still able to swallow until the very end. Dex helps keep the edema somewhat under control and eases the pressure and pain, but the tumor keeps spreading... I feel so bad, there are way too many of these gliomas when they're supposed to be rare according to the classifications. Clearly, the incidence rates are shifting globally.
Don't beat yourself up wondering how much time is left. The end comes far too fast, unfortunately, so just soak up every single good moment you can with him.

We’re all trying our best to enjoy ourselves—sometimes I even briefly forget he's sick. He's been on such a high lately, full of energy and fighting spirit, doing everything he can to stay strong.
Now that the guy and I are finally living alone in our own apartment, we're getting excited about celebrating Christmas together, and then it hits me—Dad might not be here...
Sometimes, when I’m feeling truly down and miserable, I catch myself wondering how I'll even make it through the funeral. It's awful that those thoughts even cross my mind, isn't it!?

Hey everyone! I’ve got a question for those who’ve unfortunately dealt with glioblastoma—specifically @Angela Wright/">@@Angela Wright. My dad is fighting glioblastoma; he was diagnosed back at the start of October last year. He’s already gone through radiation and four rounds of chemo. Now, his oncologist has called it quits on the chemo because the tumor keeps progressing despite the treatment. Honestly, the chemo just wiped him out, and we’ve started coming to terms with the fact that the end might be near... The doctor prescribed dex, which he’s been on for two months now. It’s safe to say he looks better—the difference between how he looked before and after the dex is night and day. Because of my profession, I know my way around pharmacology, so I’m fully aware this isn't a permanent fix. I’m just wondering, roughly how much longer do we have? I’m constantly on edge—I'm just terrified of letting myself hope...

Angela Wright said:It wasn't like that with my mom, but the whole process just kind of dulled her mind. I’ve heard about benign tumors causing personality shifts like that too. I feel for you—you're gonna need a ton of strength. When things get overwhelming, just remember—it's the disease talking through her, not her actual self. 😢
Look, it's primarily the tumor at play here. As the tumor grows, the edema follows, and that growth creates physical pressure on brain centers—which shows up as all sorts of neurological outbursts, usually hitting motor skills first. That personality shift? It's mostly the tumor itself messing with the brain chemistry and receptors because those areas are being hit directly.

The doctor mentioned the tumor actually shrank, but the swelling is clearly worse because of the radiation itself—so yeah, we're all pretty confused by the mixed signals. Really hoping they start her on Dex soon so things hopefully stabilize. I honestly feel for his sister and mom dealing with him; he was a handful even before the tumor, and now, unfortunately, it’s just been dialed up to eleven...

My dad's been super aggressive and just plain rude lately—it’s like all his worst traits decided to dial up to eleven at once. It's honestly exhausting dealing with these outbursts. Have any of you dealt with this kind of behavior with glioblastoma? One of our doctors warned us this might happen—though he was pretty blunt and rude about how he broke the news, I guess he called it—but here we are. Is there a chance the edema is causing this?

Angela Wright said:I'm totally confused here 😛
Look, he definitely needs the dex—if there's swelling, edema is likely involved. Get an oncologist to recommend it right away, along with something for the nausea! It's wild to me that he’s holding up this well without any dex so far.
They were replying to my mom. She had bouts of nausea, but didn't actually throw up. Then again, she was on high doses of dex the whole time, so that probably helped.

Thanks so much—we'll give the popcorn thing a shot, and we're definitely going to push for the dex. He's doing great, honestly—walking up to 6.2 miles miles a day, sleeping fine. The only real issue has been his speech, but even that feels like a minor thing compared to everything else. Thanks for being so quick to reply and for sharing what you know—hard-earned experience like yours really helps. 🙂

Do popcorn actually help with nausea?

Angela Wright said:Did dad have surgery? If they actually removed the tumor, they won't be using dex unless there's swelling involved. With Stage IV treatments, people usually get a dex shot for nausea, but I'm honestly not sure if that's the standard rule for Temodar. Either way—just ask the oncologist.
What really helped my mom were popping some popcorn in the air and soaking flaxseeds in a glass of lukewarm water. Let it sit for half an hour, then strain it and drink the liquid. Flax releases this mucilage that’s great for the stomach lining. It’s soothing, tastes kind of nutty, and isn't bad at all.
Regarding the dex—those ampules are strictly for hospital use. Unless a specialist writes it in, a GP can't just prescribe dex. Usually, people take tablets at home, though a GP could technically pull some strings to get ampules, but they rarely bother. A private pharmacy sold them to me once, and a home health nurse showed me (even though she shouldn't) how to administer it intramuscularly rather than subcutaneously. Dex has its side effects and they aren't pleasant—if it's not an absolute emergency, better to skip it. There are other effective ways to handle nausea. Talk to the oncologist!

You misunderstood me—I was talking about Torecan ampules, which are given subcutaneously and act as a central antiemetic. He takes Reglan as a mucosal protector, but for the actual vomiting, I think Torecan would work better. After radiation, the tumor started receding, but the swelling is pretty extensive—it's hitting the whole parietal area, not just the temporal part. He isn't speaking clearly, and while he isn't feeling too nauseous, I can tell that now (after years of being out of touch with his kids) he just wants to talk to us constantly. I really want to make things easier for him.

Quick question—my dad’s fighting glioblastoma. He finished his first round of radiation and Temozolomide, and now he’s started the five-day cycle at 285mg. Today is day four, and honestly, he’s having a rough one—constant vomiting, hasn't eaten all day... What's tripping me up is that they haven't given him any Dexamethasone yet, and nobody's even told us what to do when things go south like this. I’m pretty sure he’s entitled to Torcan via IV—should I be hitting up his primary care doctor about that? Also, is there any way to get the vials so I could just handle the subcutaneous injections myself?

silvercanyon7 said:Angela Wright😘 thanks everyone for the kind advice. I check this thread constantly just to read. Sadly, my dad lost his battle about two and a half months ago.
From the moment he got diagnosed through the whole fight, I was here reading all the time—just rarely ever posting anything. Honestly, I think I just needed the space to process everything and let it sink in.
I bet there are others feeling just like me: popping in, reading, looking for some comfort or advice. Those of us who actually have the strength right now, we owe it to each other to share whatever we think might help someone else out.

Here’s the first bit of advice from what we did—it really helped him, me, and honestly, all of us:
We stayed positive. We talked about the diagnosis openly; Dad didn't hide anything, and neither did we. Even after the diagnosis until the very end, we had over a year filled with actual joy. We didn't give up until the last second. And even though there were metastases involved, he had a beautiful year with us, and we had one with him. He wasn't in pain, either—the 10-day radiation and Temozolomide gave him the best results possible in his case. If anyone has questions about anything I mentioned, or about a NET diagnosis, just reach out. I'm here.

Wishing you all the very best.

I'm also a constant reader here (rarely post), and it gives me a sense of security and peace with how things are going.
My dad was diagnosed with Glioblastoma about six months ago. Dr. Hugh operated on him immediately and everything went smoothly. They removed part of the tumor, and by month 11, Dad started radiation and Temozolomide. No side effects so far—he walks at least 5-6 hours a day and sleeps like a baby. Since the tumor is near his speech center, talking is a struggle, but other than that, nothing. No pain, nothing. I'm trying to stay positive without losing touch with reality, you know? :/

So, I’m at a university where getting a part-time gig during the semester is basically impossible—I can only pick up work over the summer, which I do. But once the school year hits and I actually need cash, I'm stuck. My parents aren't helping out with any financial support, so I'm pretty much on my own trying to survive the next four years. I'm staying on top of all my classes and keeping a solid GPA, too. I just need to know how student loans actually work here—specifically, when does the repayment period kick in?

Giving plasma is risky—my sister used to do it a few times a year, and ever since, she’s been dealing with circulation issues (little white spots on her legs) and anemia. It doesn't totally make sense to me, but honestly, she had a ton of health problems right after donating. Now, she's actually barred from giving plasma and can barely even donate blood. Just be careful!

Fever? Syphilis? 😁

I honestly love a good breeze (especially now that it’s 😁 summer)—it doesn't bother me one bit. It didn't even mess with me back when I had that nasty middle ear infection. For as long as I can remember, I’ve just ignored drafts entirely and they've never done me any harm. My brother-in-law, though—his mom is a total hypochondriac, so he inherited that whole "fear of a draft" thing from her. We actually ended up stuck in a car with him once in 100-degree heat, and he wouldn't let us roll down a single window. We were literally dying in there...

Yeah, I ordered my colored contacts through them, but honestly—from what I know—the best ones are the Johnson & Johnson bi-weeklies. Personally, I use Bausch & Lomb and they're great, but hey, that’s just me. You'll get your lenses in a few days via FedEx—shipping is $6.75 if you're just grabbing one box, but if you grab more, shipping is free. They also have Trabr and cleaning solutions; everything I've tried is fine, so it's really up to you. You gotta try them for yourself. Just make sure you hit up an eye doctor for an exam first—diopters change when you switch to contacts, and I think mine actually went down since they sit right on the eye. Bottom line: don't just wing it and order blindly. Get an exam first, then buy.

I’ve been on Yasmina 7 for six months now and honestly—nothing but good things to say. I haven't dealt with a single side effect or any weird spotting, just nothing at all. Then again, I know every woman reacts differently, and unfortunately, most people aren't as lucky as I am—at least I got lucky with this one 😁. Since starting Yasmina, my period cramps are totally gone, and instead of lasting four days, they're down to two or three. The only thing left is that random crying spell the day before my period starts, just for no reason 😁

They don't look bad—I’d love to start using them. Are they actually available at local pharmacies here?

A friend of mine gets hammered every single weekend—and now she’s on heart meds, dealing with nasty liver issues, asthma, you name it. Basically, the more she drinks and smokes (a pack a day, easy), the worse everything gets. Not even gonna mention how rough she looks lately—just totally worn out and gaunt. Look, go wild while you're young, I get it—but you’ve gotta know when to draw the line, because your body isn't going to put up with that forever.