Posts by coastalviper49

casualpanther1 said:Hey everyone.
Too many pages have scrolled by since I last checked in here, so please don't take it personally if I skip over the backlog.
Instead, I just wanted to offer some encouragement to those dealing with glioblastoma: statistics aren't gospel. There are always outliers who defy the odds. My wife is one of them; she actually hit her eight-year mark following her diagnosis a few weeks ago. The side effects from radiation—and likely chemo—are pretty obvious now, so short-term memory lapses are more frequent, though her long-term memory remains perfectly intact. Her communication is a bit slower than it used to be, but then again, I know plenty of healthy people who struggle more with verbal processing than she does currently. Because of a congenital hip dislocation and the tumor's location affecting motor function, walking is a challenge, but she can still get around the house or manage a quick stroll on flat ground with either my help or some hiking sticks. Going uphill or downhill is a different story, though; she needs a lot of support there. You really have to be careful with the canes. But despite all those hurdles and the need for assistance, she’s still independent in her own way. And honestly, issues like incontinence don't necessarily have to be tied directly to the primary diagnosis.
For the most part, we lead a pretty normal life. That said, I’ve had to step up and handle most of the daily chores she used to manage before she got sick. Balancing that with everything else isn't exactly a walk in the park, but we make it work.
I could go into much more detail, but there's no point. She's alive and doing well (no recurrence), and the rest is just the usual friction of daily life.
Sending my best to everyone, keeping with the motto I've held since day one: never give up, just keep moving forward. At least, for as long as God allows us.
Wishing all the patients and their caregivers a lot of strength and luck.

HELLO🙂 My Mom has been living with a glioblastoma diagnosis for a year and six months now and she feels great. Her last CT scan showed no signs of recurrence, although after her surgery, there was one part left behind that wasn't operable, which they treated with radiation... I was wondering if your wife also had a residual part that couldn't be removed, or if the tumor was taken out entirely? 😍

swiftpanther102 said:John Doe: Is the second round of chemo usually harder to handle than the first?

Basically, my dad was dealing with vomiting for four days after his first session, and now he’s facing his second one. It's the PE protocol—something platinum-based—administered over two consecutive days, with the first four hours being one dose and the next two hours being another.
He’s still pretty unsure about how this second round will go because, frankly, he's terrified of what might happen, even though his bloodwork suggested he handled the first round fairly well. 😢

My mom actually cruised through her first cycle quite easily; she felt fine and her labs looked solid. The second one was a bit more of a struggle, involving some nausea and dizziness. By the third and fourth cycles, she started feeling the chills 😉, but the fifth one was an absolute disaster. She couldn't get out of bed for five days straight, her blood counts were completely shot, and her platelets dropped down to 16, which ended up preventing her from even starting the sixth cycle.

My mom underwent surgery for a brain tumor about a year and three months ago. Her doctor mentioned that the side effects from radiation tend to peak around two months post-treatment, and warned us that some symptoms might look like a recurrence when they’re actually just lingering fallout from the radiation itself. Even now, over a year later, her scalp still feels incredibly itchy and irritated. We’ve tried everything from lavender oil and Burn Aid gel to aloe vera gel from Esij, but honestly, nothing seems to be making a dent. I was wondering if anyone here has dealt with something similar? Does anyone have any actual experience with this, or perhaps a specific remedy that really works?