slypuma said:hm, we don't need it right now; if the PET CT comes back clear, they aren't planning on any therapy, just frequent check-ups... What do you mean? If we actually manage to get our hands on it, they won't give it to her?? I don't get it...
It’s because using a drug like this requires a formal sign-off from the hospital physician. Under US law, when a medication is administered within a hospital setting, the funding comes directly out of the hospital's budget. This means the decision to approve or deny the treatment isn't just up to one doctor—it's decided by a hospital board upon the physician's request. Most of the time, doctors don't even dare submit the request because they're terrified of the repercussions. Think about it: if you wanted to buy the drug yourself, you can't do it without a prescription. But the doctor won't write that prescription, because the moment they do, they put the hospital in a bind where you could legally sue for reimbursement. By writing that script, they are essentially stating that their specialist opinion deems the drug necessary, and the hospital becomes financially liable. We are talking about an incredibly expensive medication where the cost for a single patient can easily eat up half the budget of a small oncology department. Now, if there is massive trust between a patient and their doctor, sometimes they work things out in a "gray area" so everything stays under the radar. As far as Vertex Pharmaceuticals goes, the situation is slightly better than before because the drug is officially registered, so you don't need that complicated emergency import process that required hospital board intervention. Honestly, this is one of the most idiotic pieces of healthcare legislation left behind by Milinovic, and clearly, the current administration isn't in any rush to fix it.
John Palmer9 said:I’m here. Drink colloidal silver and you'll never catch a single thing—Big Pharma is just lying through their teeth when they claim it's toxic! They’re out here hyping up silver like it’s some kind of magic bullet that can fix everything under the sun. Can someone who actually knows their stuff weigh in and tell me which part of this is actually true? 😕
It’s a total fantasy because everyone would love to just pretend they're perfectly healthy while trying to cure cancer from their own living room sofa.
Sandra Moore6, I am right there with you on this. You should try reaching out to Dr. Basic over at the oncology department at Mayo Clinic. Since all of her lymph nodes have been removed, her lymphatic flow is basically blocked. If the doctor thinks it's an option, she really ought to look into lymphatic drainage and compression bandaging. Try sending a private message to the user lahor; she works in this field and can give you some solid advice on where your mom should go. When dealing with oncology patients, you absolutely have to make sure the therapist is licensed—this isn't something you take chances with.
Terry Smith6 said:We don't actually have the CT or RT scans on hand, just the written descriptions from them in the discharge papers. Is that going to be enough for a surgeon to decide if surgery is an option?
No, they’re going to need the actual MRI or CT images. Go hunt them down—under the law, you have every right to demand them.
Steven Cook56 said:So, I had a gastroscopy about four months back. Everything looked totally fine according to the doctor—stomach was supposedly healthy and all that. Then, out of nowhere, they find this H. pylori thing. It's weird, right? Anyway, here's the deal: whenever I eat something, I can basically trigger my own vomiting on command. No finger down the throat or anything, just a bit of effort and I'm good to go. Honestly? It actually makes breathing easier afterward... gives me this weird sense of relief. Like, when I'm hungry, I get nauseous, my tonsils feel like they're swelling up, and I start choking like crazy. Is this that Gerba stuff you guys are talking about? Because one time, I actually threw up blood.
If you actually paid attention to what I wrote and the links I shared, you would have realized we aren't talking about a stomach disease here. This is about a weakened muscle failing to keep the valve between your stomach and esophagus closed. Everything you're describing right now actually backs up my theory. Of course you feel better after vomiting; you're purging the stuff that's forcing acid up into your esophagus. That blood you saw? That’s from your esophageal lining being eaten away by acid. You need to get this sorted out immediately, because constant acid damage to the esophagus can lead to esophageal cancer. Seriously, go see a doctor, tell them exactly what you think is happening, and walk them through my reasoning.
Terry Smith6 said:I suspect he’s already hit his maximum radiation limit because my doctor here in Washington, D.C. told me there isn't any more room for him to take any more treatment. I could definitely look into the Gamma Knife option, though. Do you happen to know which specialist I should reach out to?
Neurosurgery Mayo Clinic, anyone? Maybe Paladino, Darkness, or Henry...
It’s likely those issues are stemming from edema. A course of dexamethasone and mannitol might offer some relief, but the real question is how far along this tumor actually is. Honestly, I wouldn't dream of discharging him until we see the MRI or CT scans. Those should be sent over to the Mayo Clinic for an assessment of surgical viability—maybe have a specialist look at it via gamma probe, for instance—and get a radiologist to determine if radiation is still a viable option or if he’s already hit his maximum dose. Taking him out of the hospital before getting those answers is just pointless.
Look, you’re dealing with classic symptoms of acid reflux—specifically GERD, which was most likely triggered by your H. pylori infection. It honestly blows my mind how far some doctors will go, ignoring such textbook symptoms just to slap a mental health label on a 17-year-old and start throwing pills at them. You can find entire threads dedicated to GERD on the health forums. You’re going to need to retake that H. pylori test, and if the bacteria is still hanging around—which is entirely possible since it's incredibly stubborn—you'll have to go through the treatment cycle again. Your issue is purely mechanical. Think of it this way: there’s a sphincter between your stomach and esophagus that acts like a valve, designed to keep stomach acid from splashing up. Sometimes that valve gets weak because of an infection or other factors like obesity, allowing stomach contents to surge upward. This shows up as chest pain, heartburn, or that sensation of a lump in your throat, especially at night when you're lying flat. Of course, it feels absolutely terrifying, which triggers panic and makes your clinical picture look way more dramatic than it actually is. My husband deals with GERD, and whenever he gets hit with an episode at night, he completely panics because he's convinced he's having a heart attack. You should try to skip heavy late-night meals, stay away from chocolate and mint tea, and sleep with your head elevated. A gastroenterologist can prescribe medication to ease the discomfort, but honestly, you'll probably deal with this from time to time for the rest of your life. Do a little digging on Google regarding GERD; there are endless articles out there.
mistyjackal842 said:They’re still out there striking. That guy Babic from Des Moines is calling all the shots—he was just on the news at noon. Looks like the poor guy isn't exactly thrilled. Meanwhile, you have all these other people sitting around unemployed and completely ignored. All they have to do is show up at the unemployment office in Washington, D.C. It seems their main priority is complaining about how much we get paid and making a huge scene about it.
Sent from my iPhone 13 using Reddit
Word is oncology patients are supposedly exempt from that. But hey, we'll see how that plays out.🤷
Listen, ladies, stop sitting around waiting. Pick up the phone and start badgering them until you actually land an appointment. You’ve got to be as relentless as a debt collector!
slypuma said:I’m just devastated. I honestly don't know how we're supposed to break this to her... how can you even deliver news that horrible? ;(
Despair isn't going to fix anything. You need to tell her she has a sarcoma—be direct. Tell her it's rare, which is why she'll likely have to see a specialist in Washington, D.C., and that she'll undergo treatment and learn to manage it. Keep it brief and clinical. At the end of the day, nobody can offer anyone guarantees in this life. You have to take things as they come and deal with the situation as it evolves. Don't go using the word "cancer"; tell her it's a sarcoma. It is what it is, and you have to face it and fight, because there's no other option. Panicking, crying, and spiraling will only make everything go downhill faster. Save your energy, because I'm warning you now: expect a massive headache with bureaucracy. Since it's a rare tumor, the medications for rare diseases are incredibly expensive.
slypuma said:The uterus and ovaries have already been removed via surgery... we're down in Miami, do you really think they should head up to New York City? We don't have any official word yet, but we know this guy is...
You absolutely, positively need to get tissue samples sent back for review and redo the pathology in Washington, D.C.! They might run into trouble because those doctors in St. Louis can be pretty full of themselves and will try to lecture you. I've seen them mess up cases involving rare tumors more than once. For you, Washington, D.C. is the number one option, period.
slypuma said:We just got the diagnosis... 😢Leiomyosarcoma... we have a relative who’s a doctor, so he went over to take a look at the test results. Based on what I've been digging up online, things aren't looking great. 😢
Look, we’re talking about leiomyosarcoma here, which is its own beast entirely. This isn't your run-of-the-mill cancer; it's a sarcoma, a rare type of tumor where surgery is usually the gold standard for treatment. There's a good chance more operations will be on the horizon, and constant monitoring is going to be non-negotiable to catch any new growths the second they pop up so they can be wiped out immediately. If you're looking for the best hands in the business, you'd want to see Duke or Shante over at the Mayo Clinic—they are pretty much the top experts in this field. Vertex Pharmaceuticals showed an excellent response against this tumor. I know a woman who was diagnosed with esophageal cancer and had it surgically removed. It’s been five years now. Since then, she’s gone through rounds of Adriamycin chemo and a few other surgeries. She’s living an incredibly high-quality life, even though she’s been dealing with some dormant spots on her lungs for a while.
slypuma said:Good morning, a few days ago we found out Mom has a malignant uterine fibroid (her uterus and ovaries were removed a couple of weeks ago), and we don't know the full details yet. Immediately after surgery, they told us it was actually malignant and that she might only have 2-3 years left. The lab results came back, and we were told she needs to report to oncology right away. She doesn't know anything yet, and honestly, I don't even know how we're going to break the news to her. 😢 What’s really eating at me is why the doctor would give a prognosis of 2 years immediately after the operation based on some rushed pathology done right there in the OR.??
Short and sweet: Because he's an idiot. The guy is just working off raw statistics and rough guesses. He's basically a robot who specializes strictly in surgery, not oncology; he just cuts out what needs to be cut like he's on an assembly line and calls it a day. These guys often have zero clue how to actually interpret statistics—90% of doctors are completely lost when it comes to those kinds of mathematical probabilities. Mom is going to get treated, and she’ll be fine, God willing. She has radiation and chemo ahead of her. Forget all those stats and numbers, because no sane person can predict this with certainty, nor should they dare to spout such things without being asked. If I had a dollar for every wrong prognosis I've ever heard, I wouldn't be sitting here typing; I'd be planning a getaway to Tenerife with a bunch of wealthy Russians. Right now, the focus needs to be on getting through the treatment and living one day at a time. I know plenty of women who had everything removed, powered through oncology, and have been living perfectly normal lives for 20 years since their diagnosis.
Listen, mistyjackal842, your mother’s situation is a completely different beast. She was stripped of her right to receive the best care available, which robbed her of any real chance to fight for more precious time with the people she loves most. That quality of life—that's what actually matters here. Linda Patel21, you have absolutely nothing to be ashamed of; if anything, you should hold your head high. As a person of faith, you did exactly what Christian teachings advise: you surrendered your father into God's hands. I made that same choice myself, and God showed His mercy by giving my mother a peaceful passing and leaving me with true peace of heart.
Having lost my own mother after watching her suffer through a long, agonizing decline, I can tell you this: the ultimate act of love for someone in pain is choosing to put your own desperate need to hold on aside and sincerely wishing for their passing. It sounds harsh to some, but letting go is actually a profound gift—it lifts that crushing weight off the shoulders of someone battling a terminal illness. Every goodbye hurts, especially when it's a parent, but they are inevitable. Learning to accept that reality and move forward is just one of those brutal, necessary parts of growing up and truly maturing.
Joseph Hughes said:Why all the drama? Nobody’s dying because of this doctors' strike. Emergency rooms are staying open, and critical surgeries and treatments for people with life-threatening illnesses aren't being pushed aside.
Well, from where I’m sitting, that’s just not the case. Unfortunately, I’ve heard plenty of firsthand accounts of people experiencing exactly the opposite.
I’m all for a strike, but not when it involves throwing it in patients' faces. Lately, I’ve been reading and hearing some absolutely horrific stories, especially regarding oncology patients. It is completely unacceptable to have things like spinal taps being postponed, or seeing patients discharged without pain management or any follow-up instructions. Honestly, I fear that someone who tramples over the basic rights of others won't be in much of a position to effectively fight for their own. This just isn't the way to do it.