Posts by feralridge3

Susan Hayes25 said:Basically, my mom is currently on 16 mg of dexamethasone. She told me they’d be tapering her down gradually, prescribing a step down to 13 mg. Fine. But apparently, this reduction starts today.
Temozolomide starts tomorrow, and on top of that, she wrote down dexamethasone at 4 doses of two 0.5 tablets each—which means a total of 4 mg per day!!!!!!!
It's the same old story with this doctor; I only see these surprises after I've already left her office and finally have some peace to read the actual orders. I cannot believe she intends to drop the dex from 13 mg to 4 mg in a single day while simultaneously starting Temozolomide. It's absolutely horrific. Does she have any idea how severe the reaction could be?

During my own six cycles of chemotherapy, I was taking 4 mg of dexamethasone daily, which worked out to 8 tablets.

Casey Palmer5 said:Oh, you can forget about that! 😁

Not from me, that's for sure. 😉

Anyway, I dropped off my medical records at the medical review board today regarding my disability extension. I honestly couldn't believe my eyes when I saw the decision. 😲 They only extended my leave by 13 days, lasting only until the first of the month. 🤷
They actually wrote that based on the available documentation, there are no indications for an extended period of care.
Let’s be perfectly realistic here: I am nowhere near being able to return to work. 👎

Casey Palmer5 said:I’m volunteering! Honestly, I have the kind of shoulders that make almost any dress look incredible. Plus, I’ve got great photos—say, from a trip to Blackwood—and plenty of ice-cold beers waiting in the fridge.

😂😂
That was a valiant effort; you actually managed to make me laugh. 😍
As for me, I’ve been to Blackwood, but as far as beer or alcohol goes, I can't touch the stuff because of my medication—actually, I've never even really been a drinker. And... let's be realistic here, I'd much rather date a man.😉

loneridge80 said:My sister is dealing with dizziness too, and her doctor mentioned it's just the lingering effects of radiation and will persist for a few weeks. I’m really hoping things settle down for both of you soon. My heart goes out to you both.

I underwent radiation back in the summer of 2008.
Most of my health issues either flared up significantly or surfaced entirely toward the end of my temozolomide treatment—which was just over a year after finishing radiation. 🤷

Angela Wright said:Look, you really need to accept that you're dealing with permanent brain trauma. You’re naturally going to be more sensitive to certain changes than people who haven't been through what you have. Your wife behind you has undergone two craniotomies and significant brain surgery. Some people never walk steady again after that. In that regard, consider yourself lucky.
Sending you a hug, and if you want to cry about it until tomorrow, go ahead, 😉we're all in this together

Over the last year and a half, we've dealt with heatwaves and terrible weather patterns, but nothing hit me nearly as hard as this instability and dizziness I experienced this weekend. It wasn't even close—this feels entirely new. 🤷
I read somewhere once that side effects from cranial radiation don't show up until a year later, but I haven't found anything regarding how long they actually last. Personally, I suspect a huge portion of my issues are direct consequences of the radiation. 🤷

Angela Wright said:And you should be incredibly proud of yourself!🙏
Let that serve as proof of just how resilient and brave you truly are. I have absolutely no doubt you'll come out on top.🙂

Thank you for those kind words.

I’d trade that pride for two big hugs and a good cry on someone's shoulder any day. 😢

The doctors seem to think I'm doing fine, but honestly, I've been feeling worse over the last two weeks. This past Saturday, it completely wiped me out. Everything was spinning. I couldn't even read because my vision kept drifting to the right, and I had to hold onto something stable just to move around. It felt exactly like what happened after my first surgery, about a month into recovery.

I went to see my primary care physician today—mostly because my medical leave is running out—and they're trying to convince me it's just "weather sensitivity." 🤷
Now, sure, changes in barometric pressure bother me, but this sudden decline happened right after a cold snap, which is actually the kind of weather I usually prefer. 🤷

Steven Ross2 said:Hey there,

I was wondering if anyone knows what the deal is with waiting for an MRI if you're going through insurance?
I've been hearing horror stories about six-month wait times, but then I have this buddy who managed to get his done in just two weeks.

Does anyone happen to know a clinic or a hospital where I could get seen pretty quickly? Honestly, I can't really swing paying out of pocket right now.

At the Mayo Clinic, I've always had to wait about three to four months.
Last year at a different clinic, I was looking at a nine-month wait; I didn't have that kind of time, so I just paid upfront and my insurance reimbursed me later.
Early last year, I only waited a month at a local imaging center, but I won't be going back there because they misread my scan. 😠

You don't really have any choice but to start calling around.

What part of the body are you getting the MRI for?

Angela Wright said:My mom was told what she has, but at our request, they left out the specific details regarding prognoses—you know, the hard numbers. We decided to "package" that information for her ourselves. We didn't want to risk them delivering it in their own way, which is often devastatingly blunt right at the start. It’s the hardest part of this whole ordeal, but it's absolutely necessary if you want to properly prepare for the illness and face it with strength. In the end, she sat down at her computer and started Googling everything anyway.

What you mentioned about people is actually a rule among Americans, given this strange collective mindset we have. People would rather know nothing at all, which means they skip the routine screenings that could catch a mass while it's still highly treatable through surgery alone (those are the most common types affecting our nation). They don't even want to know when they actually get sick, because why should they deal with the burden? There's a doctor to handle it instead... it's completely wrong. Everyone is just waiting for some instant solution to every life question, including cancer. Everyone assumes someone else should solve their problems for them.
That approach leads nowhere, especially when dealing with cancer. It's actually one of the reasons why cancer mortality rates are so high in the US. We rank second in Europe!
It's obvious that a patient can't be expected to shoulder all the administrative and bureaucratic nonsense that comes bundled with a diagnosis (that part can be handled effectively by family members, friends, or even patient advocacy groups), but when it comes to the disease itself—every single detail about your treatment—you have to know it inside and out. Almost everyone who has been successfully cured or pulled back from the brink had that exact kind of proactive relationship with their situation.

It really is wonderful when a person has someone by their side, someone to filter the incoming information.
Who knows, maybe they would have told my caregivers exactly how things stood if I had any, but I've had to manage everything on my own. 😢

Angela Wright said:Watching my mother battle her illness, and seeing what my fellow members in our support group go through, has taught me one undeniable truth: you have to become an absolute expert on your own disease. You have to stay ahead of the curve because you simply cannot rely on the system. The healthcare landscape here in the US is frankly catastrophic. Instead of having a cohesive, interdisciplinary team managing a patient's care, everything somehow defaults to a single oncologist. These doctors are under such immense pressure and dealing with such an overwhelming volume of cases that they rarely have the luxury of performing a deep, personalized dive into every individual's history. Instead, they tend to cling to standard protocols like a drunk clings to a lamp post. If the standard route doesn't work, they often won't even bother digging for alternative protocols that have proven successful in recent studies, let alone looking into clinical trials that could offer a lifeline. It’s frustrating, to say the least.
It is absolutely vital that the patient takes the initiative to dive into this kind of research themselves, provided they have the capacity to do so. In an ideal world, it would be even better if a close friend or a family member could step in and handle that heavy lifting for them. You really have to have flawless logistics in place. Honestly, there are times when I’ve become convinced that a patient's very survival depends entirely on how well those moving parts are managed.

I honestly believe that most people simply refuse to face the truth because they’re absolutely terrified of what it actually entails.
Quick question for you—did the doctor actually sit down with you, or just with your mother, to explain exactly what kind of cancer we're dealing with and what the actual prognosis looks like?
I know everything is laid out clearly on the lab results, but please, just remember me—that confused mess of a person from about a year and a half ago. 🙄

I’ve spent a good portion of this week trekking back and forth to Washington, D.C.—three separate trips, actually—to see specialists. Between the MRI, the neurosurgeon, and the oncologist, it has been quite an exhausting run. However, the results came back clear. Everything looks fine, and my next follow-up isn't scheduled for another six months. 🙂
I was riding along in an ambulance the other day with this man, probably around 60 years old, who seemed to be struggling quite a bit with his speech. When I asked him what was going on, he told me he had a brain tumor. I pressed him a little on what kind it was, but he honestly had no clue. He mentioned he was heading off for radiation and chemo, and when I asked which specific treatment he was undergoing, he said Temodal... and from there, the picture became perfectly clear. 😢 I asked him if he had actually looked into the disease, and he just flatly told me no. Not only that, but he said he has no intention of looking into it either—claiming that his ignorance is somehow a "positive" thing. Honestly, the sheer arrogance of that logic is infuriating.

I was at the oncology clinic today for my group session. It wasn't even 8:00 AM yet, and we were all just sitting there waiting for the nurse to let us in. The room was filled with people—a young woman accompanied by her mother, and two other women sitting with their husbands who are battling cancer. Everyone there is undergoing radiation or taking Temodar. I tried talking to the young woman to see if she actually knew what kind of tumor she’s dealing with, but she doesn't know, and frankly, she doesn't seem to want to know. I told her that I've been fighting this evil for two years now and that I might be able to offer some insight or information, but they didn't show any interest in what I had to say. Instead, they got caught up in this intense, heated discussion about their current status and their radiation treatments. I decided it was best to just pull back and stay out of it. 🤷

I was wondering afterwards if I should have just been blunt and pointed out that they most likely have the worst type of brain tumor. I thought maybe if I had said something, they could actually go out and get informed, so they’d know how to build up some kind of defense. 🤷
Either I step away from this whole mess and just focus on my own work, or I stay. 🤷

My test results came back all clear, but honestly, I walked out of the oncology clinic today feeling like my life was already over. There is just something about those places that drags you down into total depression. Seeing a little kid there, maybe only three years old, and watching people just sitting around waiting for their radiation treatments... the atmosphere is incredibly grim. By the time I made it out of the building, I was practically running, just overwhelmed by it all. I kept thinking, thank God I’ve had six months of peace.

I’m giving away about half a bottle—roughly 30 capsules—of 500mg Beta 1.3D glucan. It’s still good for another two and a half years.

To be perfectly clear, I’m not stopping the Beta glucan because it didn't work. On the contrary, I was incredibly pleased with it; it actually helped me clear up some persistent gynecological inflammation.
The issue is that ever since I finished my Temozolomide chemotherapy (the capsule form), I can't even look at a capsule without feeling an immediate wave of nausea.

I'm currently in the middle of a massive spring cleaning of my house, so I figured I'd just let go of things I no longer use or simply don't need right now. ☕

Maria Lee54 said:🙂 How are you doing? What stage of treatment are you currently in?

As for me, I’m still stuck in this endless waiting game...😕

My last MRI scans were done back in May of last year, which is when they confirmed the recurrence. At that point, it had been a year since my surgery, and the tumor had grown back to nearly its previous size. As for what has happened over this past year—who on earth knows? Whether it has grown further 🤷 I have absolutely no idea.
The waiting is becoming increasingly difficult to bear because this whole ordeal has dragged on far too long, and frankly, it’s perfectly normal for me to have some incredibly rough days.
What helps me get through is the personal conviction I hold that a positive attitude and sheer willpower truly can work miracles. When I arrived at the hospital two years ago, the doctors were actually stunned by the preoperative scans—they couldn't believe I had walked into the facility on my own two feet. The tumor was pressing against my spinal cord, nearly leaving me paralyzed. That initial success was a direct reflection of my will and my refusal to give up; I fought to stay on my feet.👍
So, I want to wish the same for you: plenty of goodwill and bright thoughts. Having an occasional bad day is completely natural.
Hang in there, 👍

🙂

I am currently in the recovery phase. 🙂
It’s almost been two years since this whole parade began. I finished my Temozolomide chemotherapy about four and a half months ago, and now I'm just trying to get my life back to some semblance of normalcy. Physically, I’ve improved because I make sure to exercise regularly, and mentally, I feel better and more stable. I’m a little less scattered and chaotic than I was five months ago. The only area where I don't see any real progress is my memory. It feels like there's a massive draft blowing through my head. 😍

I had an MRI in the middle of January, and the results were good.
I’m heading back for another one in mid-May.

I’m happy because I can finally get out into the mountains again. That is really what keeps me going right now. I look forward to every single new hike, and that’s how I live—just living from one trip to the next.
Hopefully, my memory will return eventually. It really makes no sense to meet someone like Buddy and then immediately forget that we even met. 🤣

Kimberly Wright said:It’s actually quite comforting to realize that the good days significantly outnumber the bad ones. 😉
And they’ve already announced that we can expect some sunshine starting this Wednesday. 🙂

That’s true enough, but I can’t help but feel like those bad days tend to leave a much deeper scar. 🤷
I don't know how it works for everyone else, but for me, those dark days can hit at any time—they might just last for a few hours, or they could swallow up the entire day. That said, I’ve found that if I actually manage to get a decent night's sleep, everything feels a little more manageable.
There was this one time where I just completely lost my will to live—not in a dramatic, suicidal way, but more like a total, crushing apathy that lasted nearly a month. I was utterly numb. Honestly, if someone had told me I needed to move just an inch to the left to avoid certain death, I wouldn't have even bothered to budge. Everything just felt entirely meaningless. If I recall correctly, it happened right around the third or fourth cycle of my Temodal treatment.

Angela Wright said:From what I’ve heard, he had GB 😢
Still, his passing within a single month feels far too sudden to me. It seems to me there might have been some complications during his treatment. GB follows a specific progression where things deteriorate gradually—one center at a time, part by part—until you eventually lose function, often culminating in the failure of a vital organ. People who reach the stage of immobility, much like my mother did, frequently pass away from pulmonary embolisms, gangrene caused by pressure sores, or other infections. It’s a long process.
This doesn't seem to be the case here, given that he was doing fine just a month ago.

Honey, please don't break your head over these questions when it's your turn to face the music. Firstly, no living soul can know for sure, and it could happen at any time regardless of whether one is ill. Secondly, you don't even carry that specific diagnosis.

Given everything you've been through, you have every reason right now to stay positive and optimistic.

When you look at that typical downward spiral toward the end, a sudden departure almost feels like winning the lottery. 🤷
Personally, I would much rather be taken out suddenly than endure a slow struggle for a year or two.
I know my PhD isn't quite like that, but there's this little worm in my brain that occasionally crawls around and stirs up fear.

I have my own methods for diverting my attention from dark thoughts. Sometimes they work, sometimes they don't. When the gloom starts to take hold, I grab a rag and start scrubbing corners of my apartment that I don't normally touch every week. I crank up the radio, sing along (my neighbors haven't complained yet 😍), and clean. Not only do I forget about the darkness, but the place ends up cleaner—I'd go so far as to say obsessively clean 🙂
and people actually invite me over because they see I'm in high spirits. 😍

I consider myself an optimist, though I can't maintain that peak level all the time.
Whenever I feel that lethargy setting in, I remember what my oncologist told me. When I asked him how many patients with my specific pathological diagnosis had passed away, he said that some survived and some didn't, but that I would survive because I'm a fighter. 🙂

Angela Wright said:Tom was battling a brain tumor, not carcinoma. There is a massive distinction in cellular structure, which dictates both the nature and the progression of the disease. Unfortunately, the specific type of tumor he faced from the very beginning offers absolutely no hope for survival. My own mother passed away from that exact same type of tumor.
Incidentally, that unfortunate brain tumor is quite rare, though it seems to have seen a recent surge in prevalence across the country—or so Dr. Shante at Mayo Clinic tells me. It likely has absolutely nothing to do with cell phones. People, please, just use hands-free sets, preferably the wired ones.
I find it truly shocking how rapidly that final stage unfolded for Tom. He barely even finished his chemo treatments. 😢

I don't recall that young man. 😢
I assume he had GBM. It always saddens me to read that someone has lost their battle with a brain tumor, regardless of the specific type. 😢
I catch myself wondering when my turn will come. I know it isn't healthy to dwell on such things, but whenever I see, hear, or read that most people simply don't survive, I feel an overwhelming sense of despair. 😢
As for cell phones, I used to spend an hour on calls back in the day, but now I avoid them and use my phone as minimally as possible.
I've actually taught most of the people I associate with to just call my landline instead.

Maria Lee54 said:I wanted to check in with you all... though I don't have much good news to share..
As I mentioned previously, I was scheduled to undergo my surgical procedure at an international clinic on February 23rd... however, things have hit another snag...
It turns out that specific clinic won't be able to proceed. They've suggested a different facility over in Switzerland instead, though the same professor who performed my initial exam will still be handling the surgery.
And now, once again, I am stuck in this agonizing waiting game...
I am currently waiting for them to send me a formal written explanation stating why treatment cannot be carried out at the original clinic. Once I have that, I can submit a request to Medicare to justify the change in facilities and get the paperwork moving for the new clinic..
I feel completely powerless to speed up this bureaucratic process. Beyond the sheer depression caused by this entire ordeal, I am struggling daily with the physical pain, trying to reassure myself that these hardships will soon come to an end. Sending my best to everyone here—stay strong as you fight your own battles...🙂

🙂
The waiting is absolutely soul-crushing. 😲
I truly admire your strength in dealing with this. 🙏
In both of my own surgeries, I had to wait two to three weeks, and the anticipation drove me absolutely insane. Even a single day's delay felt like the end of the world to me. 🙄 From what I recall, you have been waiting months for this operation already.
Is there any sign that your tumor is growing?
Hang in there. 🙂

Susan Diaz91 said:I'm thinking it was either roughly 500 or maybe $233 per day.

If I recall correctly, the rate at the beachfront resort was about $233 a day.
That was back last year.
And even if I actually had that kind of cash on me, it wouldn't have done me any good since the suite was already booked up.

😲😲

It is certainly a good thing I came across this information so that I might know how to respond properly should I ever find myself in such a situation.

The medication itself remains perfectly fine; its properties don't just vanish six months after the expiration date printed on the box. The only reason pharmacists shorten the shelf life by those six months is simply to stay compliant with federal regulations.
I’ve actually gone out of my way to verify this with people working in the pharmaceutical industry, a local GP, and even someone at a pharmacy.
The reason I started digging into this was because I received a donation of some medication that had technically expired a month prior. I went ahead and used the donated supply, and everything worked exactly as intended without any issues whatsoever. 😉

Edward Sanchez72 said:well, obviously 🙂 it's not about working out 🙂 I've always struggled with my weight because, frankly, I had absolutely no clue what I was supposed to be eating

😁
so, what's your diet looking like these days?

Where on earth is our moderator? 🤷
It isn't an issue if you overindulge occasionally—like during the holidays when everyone tends to pack on a few pounds—but the real trouble starts when that becomes your baseline, and I suspect that might be the case with Rachel Allen57.
Chronic overeating is the actual problem here.
She probably knows deep down why she turns to food for comfort.
Some people smoke, some drink, some gamble, and some just binge eat.

Edward Sanchez72 said:Look, I don't try to play doctor here... but let's be real: just because someone is struggling with their weight doesn't mean they're dealing with deep-seated psychological trauma. For some people, it really is an internal battle... but for others, they're just looking for any excuse to raid the pantry.
I personally dropped 20 pounds, so I actually know what this process looks like. And if I recall correctly, my issue wasn't some underlying mental health crisis—it was simply having too much downtime and far too much food within arm's reach.
That being said, I absolutely agree that seeing a psychiatrist or a psychologist shouldn't be treated like some shameful taboo. Seeking help should be normalized.

So, how exactly did you pack on those 20kg?