Angela Wright said:Oh, my dear 😢, please stay brave; you have so much strength inside you, even if you don't realize it yet. Just take things one day at a time and try not to look too far ahead, or you'll simply burn yourself out. Try to make the most of this time while she is still herself by focusing on quality moments together. I unfortunately spent so much of my time just stuck in bed, feeling completely drained.😢 Mom’s appetite is really up because of the dexamethasone. She’ll likely start gaining weight soon because of how steroids affect the metabolism. You might notice fat accumulating around her torso and stomach, and her face might get that rounded, moon-like appearance. Her skin could also become quite thin, almost like paper, similar to what happens with certain medical conditions. It’s so important to keep up with her skincare and hygiene—making sure she gets a full shower at least once a week and stays clean daily while in bed. With doses of dex like that, you really should monitor her blood sugar regularly since it can disrupt pancreatic function, and she might eventually need something like Glucophage to manage it. Please be sure to ask the palliative care doctor about this. I actually know someone whose husband fell into a coma, and it wasn't even because of his tumor, but because his blood sugar spiked so violently from high steroid doses.
Thank you so much, dear; your advice truly means the world to me and feels more helpful than everything the doctors have said combined. Sadly, these are the topics we have to face, though wouldn't it be so much nicer if we could all just sit around discussing kids, weddings, travel plans, and all those beautiful life milestones? But... BUT 😢 when it comes to Mom, my sister and I take shifts watching over her, or sometimes Dad or the grandkids join in; everyone who loves her is right there to cuddle her and care for her. Just the other day, I was even coloring her hair and doing her hair to make her feel pretty... we show her so much affection that she actually tells us to stop sometimes! She calls me her "little sweetheart"... she is home, surrounded by warmth and love, and we do absolutely everything just to keep her comfortable and pain-free. I've even started watching some foreign dramas while I sleep next to her, just so I can chat with her about the plot and who is doing what.🙂 We are living day by day; whenever she is in a bad mood, I feel it too, but every single smile she gives me feels like coming home. Still, I have to accept the reality that she is leaving us. Then there are the heavy, morbid details like arranging for a funeral plot, dealing with financial hurdles, or managing loans... oh, don't even get me started, you know what kind of crisis we are navigating. But regardless, I am doing everything in my power to ensure my mother lives with dignity, experiences as little pain as possible, and eventually passes away peacefully among the angels...
Angela Wright said:In my experience, the fluctuations in how they work are just so obvious. My mother would be perfectly lucid in the morning, but by the evening, she’d start losing her edge, and those lapses became much more pronounced—especially whenever the weather shifted. It seems like I'm not alone in noticing this pattern either. I suppose it might be worth trying both ways just to see which works better.
That’s likely how it will play out, isn't it? We'll keep a close eye on how things develop through Friday, and then we can continue with the pills over the weekend. For now, my mom is still fully conscious, but I can really sense the shifts in her mood and how she carries herself. It's funny how one moment she won't even want to get out of bed, and the next she's singing away and constantly looking for a snack. 🙂My little sweetheart only weighs about 115 pounds, and honestly, with my own issues with irritable bowel syndrome, I feel like I'm slowly catching up to her... but let's not focus on me right now. Thank you, Angela, I think I have a pretty good idea of what to expect since our palliative care doctor gave us such a gentle explanation today... 😢
Angela Wright said:In my experience, the fluctuations in how they work are just so incredibly obvious. It was always the case with my mother; she would be as sharp as a tack in the morning, but by the evening, she’d start losing her edge, and those lapses became much more pronounced, especially whenever the weather shifted. I'm noticing that many others seem to be having the exact same experience. I suppose you could try both options and see which one works better.
That’s likely how it will unfold, isn't it? We'll keep a close eye on how things develop through Friday, and then we'll continue with the pills over the weekend. For now, my mother is still fully conscious, though I can really sense the shifts in her gait and her mood. Isn't it strange how someone can be unable to get out of bed in the morning, yet by the afternoon, they're singing away and constantly snacking? 🙂My little sweetheart only weighs about 115 pounds, and honestly, with my own struggles with irritable bowel syndrome, I feel like I'm slowly catching up to her health status... but let's not make this all about me right now. Thank you, Angela; I have a pretty good idea of what's coming next, especially since our palliative care doctor gave us such a gentle explanation today...
Angela Wright said:rustyscout31 mentioned that the dose is increased or lowered by 2mg increments as needed. Apparently, there isn't a more precise way to do it than just estimating how things are going based on symptoms. That’s what they told me at the hospital. The maximum dosage is 24mg.
Vedran is actually posting on another forum too, so he finds it a bit exhausting to keep repeating himself here. Anyway, he managed to secure a new treatment plan using a medication he hasn't tried yet, and he's feeling optimistic about how she might respond. It's possible he has already started her on it.
Thank you so much, dear! For now, she's staying at 12 mg. I did try to scale it back to 8 mg, but she ended up complaining about acid reflux and vomiting. So, she went right back to 12 mg daily. Yesterday, she was under palliative care and they were giving her injections. Her doctor mentioned that she could just take her full daily dose via an ampule immediately rather than doing the gradual tapering method. When I suggested that tapering might be better, he argued it didn't make much sense since dexamethasone works over time anyway. Well, I suppose she knows best, doesn't she?🤷
Angela Wright said:She is entitled to medical transport from home to the hospital and back, which you can arrange through her primary care physician. Perhaps she should consider radiation therapy? Even if she reaches out now, she likely won't be seen until September at the earliest. You might want to reach out to palliative care to have them teach you how to administer the injections, because waiting around can be such an exhausting inconvenience for everyone involved. Maybe they could stop by once a week, or whenever you need to call them in? It seems like a much more manageable way to handle things. EDIT: When my mother was on dex, we never used anything higher than 0.5 mg, though I remember someone mentioning here once that they managed to find 1 mg doses. It might be worth checking with different pharmacies to see if those are available. Since we are part of the global market now, everything available abroad should ideally be accessible here too.
Yes, I’ve already checked with several local pharmacies, and so far, nothing stronger than 0.5 mg is available; however, that isn't our biggest concern anymore since we plan to combine tablets with the injections. Regarding the medical transport, I am aware of the option, but Mom simply refuses to deal with any kind of fuss or logistical hassle, and if you understand me, it is incredibly delicate trying to persuade her to do anything at all... we are doing everything in our power to keep her comfortable at home. I realize, and she is slowly coming to terms with it, that there isn't much more help to be had; while radiation might offer some short-term relief, she is just so utterly exhausted that she’s losing her will, her strength, and her energy. Her only wish is to stay home surrounded by her family, and I respect that deeply. The only alternative I've turned to lately is using those mushroom supplements in her coffee, as I don't think they'll do any harm. Could you tell me, though, what the next steps are regarding the dex? It’s quite clear the dosage isn't going to decrease, let alone be stopped entirely. Thank you! 🤷
Angela Wright said:rustyscout31, with that much dexamethasone, she absolutely needs to be taking Pepto-Bismol or some kind of acid reducer. Otherwise—and I'm assuming we're talking about the 0.5mg tablets—that 12g dose could be covered by three injections (since they come in 4g doses). People usually say that's only for hospital settings, but I actually managed to get the ampules and syringes from a local pharmacy, and my home health nurse taught me how to give my mom the shots. Personally, I’d give her one injection a day and handle the rest with tablets, making sure to split the dosage into three parts throughout the day to get the best effect. And what about phenobarbital (the anti-epileptic)? She should definitely be receiving that too. It's such a shame she won't go through with radiation, because it would really help with those brain metastases.
Yes, we are using the 0.5 mg tablets, since there aren't any stronger versions available. We've actually coordinated with the palliative care center so that a doctor visits once a day to administer the injection, which means we'll be combining the dexamethasone ampules with the oral tablets. She takes Nexium for her stomach about half an hour before the dexamethasone, but no one has suggested an anti-epileptic yet; I'll make sure to ask the doctor about that. It truly is a pity that she isn't accepting radiation, but the hospital wouldn't admit her, and honestly, Mom just can't deal with traveling back and forth in this sweltering 100-degree heat when she can barely walk. There's a new supervisor at the oncology department who refuses to listen to requests for hospitalization for palliative patients. To be frank, Mom is completely fed up with hospitals and all the running around, so we are doing everything in our power to make her life easier at home.
Please forgive me if this topic has already been covered extensively, but I was wondering: does anyone here have any firsthand experience using Charles Darwin? I've heard some talk about how this "coffee" might help manage pain levels for oncology patients. To be honest, my mother is currently battling a brain tumor—it’s spread to three different areas, one of which required surgery, and now the surgeons have essentially told us there isn't much more they can do. It has also metastasized to her liver and several lymph nodes, stemming from a primary tumor in her small intestine. Right now, she is relying on pain patches (like a high-dose Fentanyl patch) and taking a significant dose of corticosteroids, specifically 24 mg of dexamethasone daily. She is refusing radiation treatments and doesn't want to leave the house at all. I am simply trying everything within my power to keep her comfortable, especially since we've been informed that she has reached the terminal stage.😢
nimblesurfer17 said:I caught a movie the other day, and I have to say—it was quite good... actually, let me rephrase that—it was pretty damn good.👍 I haven't even glanced at the clock once—time just absolutely flew by!😁
The camera is absolutely top-notch—really impressed with the quality here.🙏 Russell Crowe and Cate Blanchett—now those two are truly something else! I was just thinking about their chemistry again—it’s one of those rare things where you just know the screen is going to light up when they share a scene together. There's such a grounded, powerful energy between them that feels so effortless. 👍👍 By the way—and this isn't even about the movie—but I can’t help but notice that Cate Blanchett just seems to get more stunning with every passing year. It's actually quite impressive!😁
I have to say, the comedic beats in this movie were such a pleasant little surprise—honestly, they caught me completely off guard! I wasn't quite expecting much in the way of laughs, but those witty moments really lifted the whole experience. It’s funny how a bit of well-placed humor can totally change your perspective on a film, isn't it?👍
I don't think this one quite earned that "excellent" rating from me—it just had a few hiccups that felt unnecessary. For instance, those scenes with Marianne and the kids right in the middle of the battle felt a bit misplaced, and then there was that shot of Russell Crowe emerging and tearing through the action... plus, following the arrow from a first-person perspective? It just felt like filler to me. Honestly, I would recommend this movie to just about anyone—no hesitation at all.
I’ve noticed quite a few people chiming in with complaints about how much certain stories stray from actual historical facts... but honestly, I’ve always wondered—since when was Robin Hood considered a real historical figure anyway?🤷 I have this nagging feeling that a lot of people walked into the theater with a very specific set of expectations—almost like they had a script in their heads already. Then, the second the movie veered off that predictable path, they just decided the whole thing was a failure. Honestly? I went in totally blind—I didn't even know what to expect—so nothing could catch me off guard. I just leaned into the story, let it take me along for the ride, and ended up having a great time.☕
I just walked out of the theater and honestly, I’m sitting here wondering if I should have just kept my money in my wallet—I mean, does a movie like this really need to be seen on the big screen? Don't get me wrong, Ridley Scott definitely knows his way around a camera, but wouldn't it have been infinitely better if he actually had something substantial to work with? Like, a script that isn't unintentionally hilarious? For a split second at the start, I thought, "Oh, finally, we're getting a nuanced look at King Richard," which helped explain why Robin is from Loxley, but then everything went sideways. Once I saw Lady Marian (Cate Blanchett) portrayed as this hyperactive semi-rural girl—who was supposedly only twenty-one, mind you—and the plot kicked off without any of the classic Sherwood Forest vibes, the looting, or even decent action? Instead, we got those incredibly silly fight scenes with Little John that felt so unconvincing, it was almost painful! I actually lost it during the line where he says, "Marian, I Love You," and it truly hit a breaking point for me when she decided to jump right into the fray... goodness gracious! All those iconic characters I grew up with, like Little John, Father Tuck, and especially Lady Marian—they all felt like mere shadows in a film that is just far too long, tedious, and frankly, exhausting. It's such a well-directed film trapped inside a catastrophic script!👎
Could anyone lend me a hand? I was wondering if someone might be able to recommend a skilled and approachable digestive surgeon in Washington, D.C.? I’m really looking to get a second opinion after my recent consultation with a surgeon at the hospital in a coastal city... he doesn't seem keen on performing the surgery unless it becomes an absolute emergency, almost as if he's hesitant to take any risks or just isn't feeling up to the task... The situation involves surgery on the small intestine and a carcinoma in the mesentery...
...I honestly feel like we might have gone a bit overboard with this topic, which really deserves its own dedicated thread... I think Lees understood what we were trying to get across, but if she didn't, then she probably won't, right? Let's just focus on supporting one another instead, just like we've always done... Go ahead, ladies... go for it!👍
Susan Morales66 said:Sometimes I can't help but feel like some doctors just love the idea of strolling through those hospital hallways in their white coats, feeling their egos swell while regular folks scramble around them, carrying gift bags and trying to stay in their good graces...
That might hold true for a few exceptional cases, of course, but isn't it really just a self-perpetuating cycle? We've all contributed to that dynamic by constantly showing up with those little tokens of appreciation. Personally, I'm a firm believer in doing things the right way, and I've never once tried to grease any doctor's palms—even though that stubbornness has definitely backfired on me more than once... but then again, not everyone plays by the rules. Some people just hand over the gift, and suddenly, their medical issues are resolved in a very quick and, shall we say, painless manner. As for those of us clinging to our principles, I suppose we'll just be waiting our turn in line... hoping for better days ahead.☕
Maria Jones40 said:Why don't doctors stage a rebellion? Honestly, there are so many simple reasons for that, isn't there? For one thing, they go home and feed their kids just like everyone else does. They also deal with the fear of working within a system that feels stacked against them, especially when they face constant criticism without receiving any actual support from patients—which is quite the opposite of what you're suggesting. On top of that, they are under immense pressure from the public eye, and let's be real, so much of how things function in our healthcare system is dictated by political interests. It’s no wonder they eventually become apathetic; they're basically just counting down the minutes until they can get home and finally feel like normal human beings again.
Sorry Les, I truly have nothing against you, 😉 but everything you've pointed out applies to all of us employees across various other industries too. In fact, it applies to absolutely everyone, and for some people, it's even more intense because they endure all of this for a significantly smaller paycheck.
Angela Wright said:Could you please be specific about who exactly is spreading untruths and where they are doing it? I’d love for you to quote them and explain. After all, everyone contributing here is just sharing their own personal experiences. Unfortunately, this entire forum was created because people are being denied access to information they have a fundamental right to receive every single day. We aren't just talking about status updates; we are talking about treatment protocols and everything surrounding medical care. What you might call "debating medical knowledge," I prefer to call wading through a mess of misinformation—all because we couldn't find anyone to help us clarify the things that are (or aren't) happening to us. Everything that has been set in motion by individuals—myself included (I'm referring to our association and the specific initiatives we are undertaking)—is the kind of thing that should be organized at a state and professional level in any normal, healthy society. It shouldn't be the case that one girl, Anne Frank, has to organize a stem cell bank from a deathbed instead of some highly compensated official doing that job properly. So, please don't try to sugarcoat things when the reality is as hard as rock. There are plenty of problems, actually; in fact, the whole system is a complete shambles. For instance, they are now quietly shutting down laboratories in local community clinics... Yes, it really does take a certain amount of psychological fortitude to deal with the outbursts of certain strange individuals—people who seem more suited for psychiatry—who feel daily compelled to dictate our fates.
Nancy Vaughn70 said:Could anyone please help me out if you happen to know anything about this? I'm really looking for information regarding liver tumors—how they are treated, what the different types are, pretty much anything anyone can share. Thank you so much for your help.
I'll try to share a little bit of what I've gathered so far... from what I understand, chemotherapy unfortunately doesn't tend to be effective against liver cancer (much like it isn't for kidney cancer), and surgical removal often doesn't make much sense if we're talking about a large, primary liver carcinoma, since the surrounding area is usually already affected. If the situation involves metastases in the liver and kidneys—which mostly stem from colon or small intestine cancer—and if it's an adenocarcinoma, while it might not be curable, patients can still live for several years. Please don't take any of this as absolute medical fact, though, as I've just been researching this through various American health websites and online resources... Wishing you the best of luck.
...sending my best to you, Kg, and to your family, and to everyone else walking this same difficult path... For those of us still fighting, we haven't lost hope just yet, though I often wonder—if our loved ones have to endure endless suffering, isn't it sometimes a mercy to find an end to all that pain? It truly breaks my heart for you, Kg, knowing how much your father went through during his long struggle. At least now, he is finally at peace.
Elizabeth Diaz60 said:On this heavy Thursday, my dear mother passed away. She was only 49 years old. It has been nearly three years since her diagnosis (glioma), and she had been immobile for this past year. She spent her final ten days in the hospital due to her condition worsening. Her status during her stay was quite unpredictable, and we truly held onto the hope that she might be able to come back home to us. She spent her entire life, including those difficult final years, surrounded by the people who loved her most. Even in her very last moments, she wasn't alone; my sister, my wife, my sister's partner, and I were all right there by her side. Just as she did throughout her whole life, she fought with everything she had until the very end. She was such an extraordinary woman throughout her lifetime. She lived entirely for her family—for her children, her husband, and her parents. She always put our needs before her own, focusing on caring for us rather than herself.
Thank you, Mom, for everything! You will live on forever through us and through our children!
Elizabeth Diaz60, please accept my deepest, most sincere condolences...
Frank Taylor4 said:Hi there, my cousin went through chemotherapy and actually handled it quite well; he didn't even experience any hair loss, though he did take his regular chemo along with some kind of natural immune booster from the United States. If you're interested, I can certainly look into it for you, since I don't know the specifics myself right now.
Thanks so much for sharing that! It honestly makes me feel so much better to hear that your cousin didn't have to deal with those harsh side effects. Regarding the immune support, my mother is already taking a few supplements and some local propolis... her oncologist hasn't suggested anything else, so I'm assuming everything is on the right track.👍 I was wondering, if you don't mind me asking, what specific type of cancer is your cousin fighting, and has it spread at all—if so, where?