Posts by brightgardener8

Angela Wright said:Weather😳 ...when Mom is doing poorly, I try to tell myself it’s just the weather shifting, and honestly, that makes it a little easier to stomach.

I mean, I really want to believe that, right? I'm basically lying to myself at this point. But the weather hasn't changed in days, and she's still just as lost as ever... 😕

Let me jump in here; whenever I try to open up about what we’re going through, I get this look from people—like they’re judging me or looking at me with this pitying, stupid expression. It honestly feels like THEY are the ones who need comforting, which is just wild. But whatever, let's move on to something else because I really don't want to kill the vibe here... and hey, I guess you can't blame them for reacting that way.

Anyway, we actually had about ten days of feeling good where my mom was doing great. On the phone, she sounded like her old self again, totally healthy. Then, out of nowhere yesterday, she just spiraled back into being completely lost. 😢

Melissa Kim45 said:Honestly, I am losing my absolute mind here. 🙄
My condition is just swinging all over the place. Is it because of the new protocol? Or maybe I'm just exhausted from everything? Could it be the weather changing, the full moon, or some kid acting up? Honestly, my mom is being un-be-lievable. Just impossible.
She drove me so crazy that I ended up tearing her unopened pack of cigarettes into tiny little shreds—I actually scared myself doing it. Then, get this: I found out she had been picking up the pieces and saving the bigger bits for herself.
So, yeah, what the hell. I decided to leave her a few loose cigarettes, which she proceeded to smoke every single one of them (because of course she can), and now she’s sitting there coughing like crazy, choking and hacking away. It's a total nightmare.

Your mom is something else😉 we've all got those stories; sometimes we actually have a good laugh with our moms when they start their usual nonsense... I should probably start writing them down!

Nancy Hernandez43 said:We’ve "only" got the 6th chemo session left, which is scheduled in 25 days. At first, Mom’s cycles were spaced 21 days apart, but because her neutrophil levels were bouncing around, they switched it to 28 days to make sure we don't wreck her bone marrow.

At the start, I honestly thought these five months would feel like an endless, agonizing crawl, but looking back now... the time has actually flown by.

Like Mom always says: "We cherish the morning because we're awake to see it."

Kisses and thanks!

Mom starts her third round of chemo next week. Our situation is the polar opposite because we can't even bring ourselves to think about what happens after this last sixth round... time is moving way too fast (especially considering those "touching" medical prognoses we get month after month), and things are starting to take a turn for the worse. We've been living in this parallel reality for half a year now, and I can barely even remember what life felt like before everything became so abnormal.😢

jadepuma662, I am so sorry for your loss.

Carol Sanchez2 said:Hey, what's up!

I wanted to ask you guys—is "dexi" actually a real thing? Is that the word people are using? My mom was just prescribed some dexamethasone tablets. She has to take them right before her chemo sessions and then continue for a few days afterward. She’s starting a brand-new chemotherapy regimen, and they have her on these pills specifically to prevent any nasty allergic reactions. But here’s the kicker: she suddenly has to take 16 of them at once, and then she has to do the exact same thing on the second day and the third day. It sounds like an absolute nightmare. Am I tripping, or is that what people call "dexi"? Or did I totally get the name mixed up?

I don't know who this guy thinks he is, but honestly? It’s getting old. Does anyone else feel like we're just watching the same tired act on repeat? You see these types everywhere in the States—people who think they're untouchable just because they can shout a little louder than everyone else. Is it actually confidence, or is it just pure, unadulterated ego? I'm sitting here looking at the situation and wondering if there's even a point in engaging anymore. Why do we keep giving these people a platform?So, dexamethasone—it’s basically a corticosteroid that seems to be used for just about everything, if you ask me. From what I've gathered, its applications are incredibly broad. Why does it feel like this one drug shows up in every single medical textbook? I can't believe I'm still seeing people trip over the basics of pharmacology like this. Honestly, if you haven't brushed up on how drugs actually interact with the body, what are you even doing? You can read all the flashy marketing fluff you want, but without understanding the actual science behind absorption, distribution, metabolism, and excretion, you’re just guessing. And in medicine, guessing gets people hurt. Is it really that hard to grasp the concept of bioavailability? Or why a certain drug hits like a freight train when taken orally versus an IV drip? It’s not magic; it’s math and biology working together. Most people just want the quick fix, the "pill for every ill" mentality, without bothering to ask *how* that pill is actually getting to its target. If you're serious about this stuff, stop looking for shortcuts. Go back to the fundamentals. Understand the difference between a therapeutic effect and a toxic one, because the line between them is thinner than most people realize. Why do we care about half-lives? Because if you don't, you're either under-dosing or poisoning someone. Simple as that. It's high time we start treating pharmacological education with a bit more respect instead of just skimming the surface. If you can't handle the heavy lifting of the theory, maybe you shouldn't be touching the meds in the first place. Just a thought.When it comes to brain tumors, that stuff is used specifically to dial back the swelling—the edema, if you want to get technical. As for any other medical uses? Honestly, I haven't a clue. Maybe Angela Wright can shed some light on it; she’s already finished her PhD in pharmacology, so she actually knows her way around these drugs.😉

Linda Campbell said:Just checking in to say that everything finally cleared up for me, even though I was convinced it never would.

Linda Campbell, hang in there! I think we all here have a pretty good idea of what you're going through right now. There aren't really any magic words I can throw at you that'll actually help, but this too shall pass. That's the one thing I know for sure.😳

Linda Campbell said:She passed away tonight at 10:30 PM. She fought with everything she had left in her. We were right there by her side all day today—kissing her, holding her hands, kissing her face... just making sure she knew she wasn't alone.

I am so incredibly sorry for your loss.

Angela Wright said:... I might be able to talk my home health nurse into helping out (if she’s willing to set up a PICC line during those five days of therapy to make administering the meds easier), since we’ve gotten along pretty well, but honestly, how we're actually going to get a hold of the medication is still a total question mark.

Is your mom still undergoing any chemo right now?
We actually started the second round of Temodal today, and they bumped the dose up to 320 mg this time. My mom is already dealing with nausea and vomiting again... We're going to have to try that ginger trick because I'm running out of ideas. Apparently, Reglan and Peptoran just aren't cutting it.

Angela Wright said:Unfortunately, beer—or any kind of alcohol for that matter—is off the table for anyone dealing with brain tumors. They’re usually on anti-epileptic meds, and if you actually read the fine print on those prescriptions, they strictly forbid consuming any alcohol whatsoever.
.

I actually went looking through the Mythology instructions recently because of what you mentioned, but I couldn't find anything about an alcohol ban. My mom likes having a tiny bit of red wine every now and then with lunch (we're talking really small amounts), so now I'm stuck wondering what the move is. 😕
We just let her have it since it's supposedly good for her blood, plus she can't stand beet juice anymore—she used to drink it during chemo when she was feeling sick, so now she just associates the taste with feeling miserable...

Elizabeth Collins60 said:Has anyone else dealt with an insane increase in appetite from taking steroids? My dad just eats and eats; he’s hungry 24/7. Plus, his face is getting super flushed and red. Has anyone noticed this or seen it happen when someone's been on them for a while?

My mom's been on steroids since she first got her diagnosis—about 5 months now, with just a few short breaks, and her dosage changes all the time. She’s dealing with the exact same symptoms you mentioned: an unbelievable appetite, facial redness, and swelling.

Betty Adams12 said:If you're a girl thinking about jumping on Diane, my advice is simple: don't. Seriously, think twice before you even consider it.
I didn't have a single breakout when I first started taking them. The only reason I even went on Diane was because my cycle was such a mess and they promised to fix it. Well, look where that got me. Now I'm dealing with liver issues—apparently, that synthetic estrogen can cause fat buildup in the liver—my skin is an absolute disaster, and my hormones are basically doing laps at a hundred miles an hour. It’s been two and a half years since I stopped, and I'm still dealing with the fallout.

How long were you actually on them? That's gotta be a huge factor in how much damage was done, right?

northernfox9 said:So, I’m back after a while, and unfortunately, it’s not good news. It looks like this damn thing has spread to his left lung. The X-ray shows a 5cm shadow, even though there was absolutely nothing there just a month ago. Is that even possible? We’ll have the marker results in about a week. On top of that, my dad's knee joints are incredibly swollen, and his feet are so puffy he can't even get his shoes on. I know someone mentioned something about this here before, but I can't find the thread for the life of me. Please, help—what can we give him to bring the swelling down? Maybe some kidney tea or a diuretic?

Hey there! Haven't seen you in a bit.
At the start, we were giving Mom tea made from the Cleavers plant (here's the link , maybe try that? Or maybe someone else here knows a better way...

Angela Wright, what’s the deal with your mom? Are they still pushing those massive doses of dexamethasone on her? Over here, things are... well, unpredictable. That 8 mg dose worked wonders from Thursday through Monday, but now we're starting to see things slip a little again. 😢 We’ve got another routine checkup at the hospital this Friday, so we'll see what the doctors decide to do about it.

Hey there,
here’s my update:
Mom took a massive hit last week. She was totally lost, drifting in and out of time and space, her balance was shot, and she was talking so slow... Honestly, I was already panicking that she was going to end up bedridden. I rushed her to the hospital, and they bumped up her dose of Dexamethasone, which helped things stabilize a bit 👍 . How long this is going to hold? Who knows. I can't even bring myself to think about it... We haven't had a CT scan since we started therapy back in May, so we're basically flying blind regarding what's actually happening in her head 😳
Hang in there, everyone—especially Anaxy, who had a really rough week last week

Linda Campbell said:... I'm basically having a total nervous breakdown right now

Hang in there; what else is there to say?🙂

Anonymous said:Does anyone know what these results mean? (During radiation—she’s hit session 21):
S-alk phosphatase
S-GGT
transaminase levels rose to 54
alkaline phosphatase keeps climbing from 159 to 165
as does gamma GT, going from 128 to 139

She's getting red from the radiation—doctors say she can't use any greasy lotions. What should she use?

Look, if it isn't unbearable, maybe just power through those last 9 sessions and then she can slather on whatever she wants. It's totally normal for the skin to get red and sting. We were told the exact same thing—don't put anything on the area while undergoing radiation. If it gets really bad, doctors usually prescribe some specific purple liquid. My mom's skin turned red too, though she didn't get full-on burns, just the tips of her ears started peeling. Once the radiation was finished, she used some kind of green oil—I think it was wheat germ—and some aloe vera cream. She's fine now; no lasting marks on her skin at all.

Linda Campbell, is your mom doing any better😳?

Jamie Rivera78,
check your inbox!

Mom started her first cycle of Temodal today—245 mg. She’s feeling super nauseous and keeps throwing up. Does anyone have any advice on how to help her out? Angela Wright, do you know anything about this? I'm stuck at work right now and honestly don't know what to do. She already took some Reglan.
Back when she was taking Temodal for 42 days straight, she only felt sick once, and I'm not even sure if it was actually the meds or just because she got worked up after the woman sharing her hospital room passed away. But keep in mind, that was a much lower dose—only 125 mg.
Help!

Elizabeth Collins60 said:Look, speaking as a doctor, I used to personally visit my patients every single day just to handle their injections, and then I'd leave them with tablets to get through the weekend. I had one patient who was taking as many as 32 pills a day. You can take these long-term, but they absolutely spike your blood sugar, so you have to monitor it closely—some people even end up needing additional diabetes meds because of it. There’s a whole list of side effects, sure, but honestly? None of them compare to the main issue we're actually treating. At the end of the day, the benefits far outweigh the downsides.

My mom was already struggling big time with her blood sugar before she started on Dex, and now things get pretty scary when her levels hit 27 despite the insulin. That is dangerously close to a diabetic coma... We try to keep the pill count as low as possible because our doctor warned us about the risk of stomach ulcers. We really can't afford that right now. And what's the deal with those home health nurses? How do you think they manage without doing injections? I don't get it! Isn't that literally one of the main reasons we need them in the first place??

Ryan Fisher64 said:That's it... it's over. Just pure misery, sadness, and pain filling up my life right now. Mom passed away on July 31st at 4:30 PM in her living room.

Ryan Fisher64, I am so sorry for your loss. I really hope things start looking up for you soon, even after a hit like this...