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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 363 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
Robert Nelson82 Robert Nelson82 Newcomer
4 messages
joined Nov 2010
#1941 ·
Look, I respect anyone trying to help, really, but people coming here looking for medical advice need to remember one thing: cancer is lethal. Period. No matter how much good intention is behind these tips, they’re just coming from amateurs. It’s true that professionalism in medicine—just like in any other field, I guess—has hit rock bottom lately, but maybe only actual professionals can truly judge that.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1942 ·
Robert Nelson82 said:Every act of kindness deserves respect, and I appreciate the sentiment, but anyone seeking advice needs to remember that cancer is a lethal disease. No matter how much good intention is behind a suggestion, it’s still just the opinion of a layman. It’s true that professionalism in medicine—just like in any other field—has hit rock bottom lately, but only actual professionals can truly judge that decline.

I have to disagree. Every single one of us facing this illness has the fundamental right to understand our treatment, the methods being used, and based on all the data we gather, make the final call regarding our own care! You don't need the brain of an astrophysicist or some superhuman IQ to distinguish between what works and what doesn't. Information is everywhere today—relevant studies and clinical protocols are at our fingertips. And because doctors are just human beings, subject to error and bias, we absolutely must maintain control over what is being done to us. That is precisely why patient advocacy groups exist; their job is to guide members toward verified, correct paths, but a legitimate organization will never—and should never—ignore expert medical input. Collaboration across all levels, or what they call "stakeholders" in the States, is absolutely vital. Personally, I frequently run into physicians who aren't even aware of the latest clinical trials published abroad that could actually save their patients if they were simply pointed in the right direction. Usually, patients find this information themselves by scouring the internet or reaching out to advocacy groups like the one I work for. The funniest part? Most of these specialized medical websites are open to everyone, and often provide even more granular detail to doctors, provided their hospital or clinic pays for the subscription.
It is high time our medical establishment adopted this model, which has been the standard in more advanced nations for a long time now.
Nothing about us without us!
neonpuma5 neonpuma5 Newcomer
3 messages
joined Nov 2010
#1943 ·
Thanks for the advice... He had his first round of chemo today and honestly, he handled it like a champ. I mean, does that mean every single session is going to be this smooth? Who knows. But still, seeing him get through the first one without a total meltdown is such a huge relief. He’s heading back in for the second round tomorrow morning, then we get a week's break before the next cycle starts. Being here in the States, the doctors can be pretty stiff—they aren't exactly thrilled if you even mention using anything they didn't personally prescribe themselves—but I’ve been doing some digging. I've been talking to people who have been through this exact same thing, and they mentioned that taking Germanium can actually make the chemo side effects a bit more manageable. It’s definitely not cheap—it's about $65 a bottle—but if it helps him get through this nightmare a little easier, money is honestly the last thing on my mind right now. Thanks again to everyone!
Robert Nelson82 Robert Nelson82 Newcomer
4 messages
joined Nov 2010
#1944 ·
Angela Wright said:I disagree. Anyone dealing with an illness should have full insight into their own treatment plan—how they're treated and based on all available data, they should be the ones making the final call! You don't need to be some NASA scientist or a genius to tell good from bad. Information is everywhere these days—actual studies and clinical protocols. And since doctors are just human beings, we absolutely need control over what we are being subjected to. That's why patient advocacy groups exist; their job is to guide members toward verified methods, though a serious organization would never ignore expert input. Collaboration at every level—what they call "stakeholders"—is vital. Honestly, I run into doctors all the time who aren't even aware of recent clinical trials published abroad that could actually help their patients if they were pointed in the right direction. Patients usually find this stuff themselves by Googling or asking an advocacy group, like the one I work for. The funniest part? Professional medical databases are open to everyone, and doctors can access even deeper data if their hospital pays for a subscrip

People like you scare me—acting like you're so brilliant and handing out advice when you clearly haven't got a clue what you're talking about.
There’s a massive difference between being informed about your care and trying to make decisions that, logically, should be left to professionals. You aren't just putting yourself on the same level as MDs—which you obviously aren't—you're basically insulting their expertise based on some things you read on a website.
Hey, if you keep "educating" yourself like this, you might as well just open your own private clinic. I mean, why bother with med school, residency, or years of training when you can just learn everything online, right?😉
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1945 ·
Robert Nelson82 said:People like you actually scare me—the ones who act like they're geniuses and try to lecture everyone else when you clearly haven't got a clue what you're talking about.
There’s a massive difference between having an opinion on medical treatment and making life-altering decisions that should strictly be left to the professionals. You aren't just putting yourself on the same level as actual doctors—which you obviously aren't—you're actively insulting their expertise based on stuff you skimmed on some medical websites.
Hey, if you keep "educating" yourself like this, you might as well just open your own private clinic tomorrow. Why bother with med school, residency, or years of specialized training when you can just Google everything and call it a day? 😉

Oh, please! Give me a break!👍
Honestly, it revolts me when people feel entitled to drop their "expert" judgments on others without having the slightest idea who those people are or what they're going through. It also sickens me when people think they have the moral authority to dictate someone else's fate without even bothering to ask what that person thinks, regardless of how much "knowledge" or "expertise" they claim to possess.
Shame on you, "expert"!

EDIT: I have to point out again—and I don't know how many times I'll have to say this—how fascinating it is that these self-righteous "moral pillars" and "medical geniuses" pop up just to lecture and tear others down. You could count the actual, helpful, direct professional advice or answers to specific questions on one hand since this thread started. People are practically begging for real help here, but instead, we get this...
Total garbage.
Dana Brown56 Dana Brown56 Newcomer
1 message
joined Jan 2016
#1946 ·
Hey everyone, I was wondering if anyone might have some advice on what kind of pills we should pick up for my mom to help ease those nasty chemo side effects. She actually just finished her very first session today. She’s already been taking Imunoahcc, and she also had some Tylenol tablets—well, I think that's what they were called, my memory isn't perfect!
Keith Thompson Keith Thompson Newcomer
3 messages
joined Jan 2009
#1947 ·
Robert Nelson82 said:It honestly terrifies me to encounter someone like you—someone who goes out of their way to act profoundly intelligent and wise while dispensing advice without having the slightest clue what they’re actually talking about.
There is a significant difference between simply understanding how a treatment works and actually making the call to proceed with it. Logic dictates that such decisions should be left entirely to the professionals.😉

You’re absolutely right. This kind of thing really needs to be left in the hands of the professionals—and frankly, that's exactly how it ought to be.
I can't help but wonder if the average person even has a clue who they're talking about. I am a professional.Is it even worth reaching out to a professional when you already know exactly what the goal is? I mean, does anyone actually bother with all that formal back-and-forth if the objective is already crystal clear? It feels a bit redundant, doesn't it? on Quite the professional, isn't he?
A true professional is someone who can step in when you have such a brutal cold that they’d practically have to perform surgery on your nose just to help you breathe again. But a real expert? A real pro is the one who prescribes a treatment plan so effective you don't need to resort to drastic measures just to catch a breath.
That is exactly why advocacy groups exist. Important.I suppose I'll have to be the one to point out who the original is and who's just a cheap imitation.
I can certainly imagine that those caught in the middle of such democratic oversight might start feeling a bit rattled. I wouldn't go so far as to say they’re descending into full-blown panic, but let's just say they aren't exactly having the best time of their lives.
In my support group—which consists entirely of patients, both those currently battling illness and those who have temporarily cleared it—we’ve already grown to over a thousand members. It really makes you wonder what the "top tier" list of professionals looks like on our side of things..👍
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1948 ·
Dana Brown56 said:Hi everyone, I was wondering if anyone knows which pills we should pick up for my mom to help ease her chemo side effects. She just finished her first round today. She’s currently taking Imunoahcc, and she also had some Tylenol tablets (I think that's the name).

Unfortunately, aside from anti-nausea meds, there isn't much that actually works, and even those don't seem to do the trick for everyone.
The main thing is keeping her blood counts stable, which they're already monitoring constantly at the hospital anyway. You basically just have to power through it, then focus on boosting her immunity with proven complementary supplements after every cycle. We've covered this topic plenty of times on this forum.
Douglas Thompson7 Douglas Thompson7 Newcomer
1 message
joined Nov 2010
#1949 ·
Hey everyone, just scrolling through your posts and wondering—where do you guys get the strength? My amazing mom was just diagnosed with cancer and it's already metastasized, and honestly, I'm a total wreck.
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#1950 ·
Hey Douglas Thompson7... believe me, we’ve all been falling apart at some point. But you just have to realize there is absolutely zero use in dwelling on it. You have to find the courage to move forward! I know it isn't easy, but what can you even do? We don't get a say in the hand life deals us.

When my dad passed away, I honestly thought I was going to follow him into the grave right then and there. But somehow, I keep finding comfort in the fact that he had such an incredible, fierce will to live. Since he didn't get to finish his journey, I feel like I have to make sure I actually live mine.

Hang in there! :*
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#1951 ·
Robert Nelson82 said:Honestly, people like you terrify me. You strut around acting like some kind of genius, tossing out "expert" advice to anyone who will listen, when the truth is you haven't the slightest clue what you're talking about.
There is a massive difference between having a little bit of insight into medical treatments and actually making decisions that should be left entirely to the professionals. You aren't a doctor. Period. But you’re out here acting like you are, putting yourself on the same level as medical experts, and frankly, it's insulting. It is absolutely ridiculous to spit on their expertise just because you read a few things on some medical websites. Get real.
Listen, if you keep educating people like this, you might as well just open your own private practice right now. Why bother with any of that nonsense? All those useless degrees, specialized training, internships... what a waste of time. You can learn everything you need to know on the internet anyway. It’s all right there. Seriously.😉

Professionals?! You mean the same "experts" who kept pumping my dad full of 1.5 grams of antibiotics for a simple sore throat while he actually had throat cancer?! They just kept treating the symptoms until it was far too late. By then, he was forced to undergo a horrific surgery. Absolute incompetence!
So you have professionals—actual "experts"—who look at a patient, tell him straight up that he doesn't have lung cancer, and then just send him packing with a useless bottle of antibiotics. Then, fast forward three months when the whole thing has metastasized and spread everywhere, they suddenly realize they made a massive mistake? Unbelievable. Absolute incompetence. 😲

I will never forgive myself for staying silent while all this was going down. I should have spoken up sooner instead of actually believing those slimy, corrupt professionals!

Or maybe I should listen to those "professionals" who told me straight to my face that they couldn't find an oxygen tank anywhere when my dad was struggling and gasping for air! Absolute nonsense! They didn't even bother asking where I could actually source it, despite the fact that they were just sitting right here recommending people to contact! Unbelievable!

Look, if you have absolutely no clue what’s actually happening out there—and I mean if you haven't felt it firsthand—then do us all a favor: cover your ears and shut up. Seriously. Don't you dare sit there and spit on people who are wasting their precious time trying to help those whom "professionals" are quite literally killing through sheer, unadulterated negligence! ☕
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#1952 ·
Exactly—since when did you need a medical degree just to tell someone where they can get their hands on oxygen?! You don't. Period. All that actually matters is whether or not you give a damn about those people. 😉
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1953 ·
Douglas Thompson7 said:Hey everyone, I’ve been reading through your posts and I have to ask—where do you all find the strength? My wonderful mom was just diagnosed with cancer that has already metastasized, and honestly, I feel like I'm completely falling apart.

That initial shock when the news hits is easily the absolute worst part. Things actually tend to stabilize once you move into fight mode. And don't let fear take over; you have way more grit inside you than you realize right now.
Hang in there and keep us posted.
Robert Nelson82 Robert Nelson82 Newcomer
4 messages
joined Nov 2010
#1954 ·
brisksurfer said:professionals?!?!?! The exact same ones who kept giving my dad antibiotics for strep throat when he actually had throat cancer?! They just kept going until it was too late, and then he had to undergo this horrific surgery!
Or those "professionals" who told him after that that it wasn't lung cancer and sent him home with more antibiotics, only to tell us three months later—after everything had spread—that they made a mistake??!?!?!? 😲

I'll never forgive myself for not speaking up about what's happening here instead of trusting those slimy, bribed professionals!!!!

Or maybe those professionals who told me I couldn't find oxygen anywhere for Dad while he was struggling and suffocating?!?!?! And they didn't even bother asking where to get it after they literally recommended someone right here on this forum?!?!

I mean, if you don't have a clue and haven't felt what's happening to us firsthand, maybe just cover your ears and shut up, rather than spitting on people who spend their precious time trying to help those whom "professionals" are literally killing through sheer negligence! ☕

You and everyone else who’s disgusted by professionals can't see the forest for the trees. Be consistent with your words—if you hate them so much, don't go to those slimy, corrupt doctors in the future because you have this forum and various advocacy groups to help you heal.
And as for the "spitting," it's an absolute right and the strongest argument here against Angela Wright and her little group of followers. Get angry at every reasonable statement and try to silence anyone brave enough to say something so sacred with every insult available. Pathetic!!!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1955 ·
Robert Nelson82 said:You and everyone else who’s turned their nose up at the professionals are missing the forest for the trees. If you’re going to talk big, be consistent. Don't go running to those slippery, bribable doctors in the future, because you’ve got this forum and various advocacy groups to handle your treatment instead.
As far as the spitting goes, that's strictly a right and serves as the most powerful argument Angela Wright and her little fan club have. You lose your mind over every reasonable statement, throwing every insult in the book just to try and silence anyone brave enough to make such a sacrilegious claim. It's pathetic!

Go ahead then—prove you aren't just personally miserable. Quote me, please, and show exactly where I gave "professional" advice or where I was spitting on anyone. And if I was, point out where I did it without an actual argument!

Yeah, I lose my mind every single time when faced with these "moral authorities" who think anyone with a degree other than an M.D. is a complete moron, incapable of understanding what's happening to them or managing their own lives. They actually think they have the right to decide things *for* people instead of letting them choose for themselves! 😠

If my tone bothers you that much, use the report button. Report me to the moderators—assuming you don't view them as quacks too, since they're the ones who pinned this thread to the top.

And honestly, what exactly have you contributed here that is smart, rational, or expert?
That cancer is a serious and deadly disease... wow, truly a stroke of genius. 🙏 A PhD in oncology right there!

Stop trolling if you don't have anything intelligent or useful to say. Go start your own thread so you can whine about how miserable and misunderstood you are, or how stupid patients are, or whatever. I'm sure you'll find a bunch of like-minded friends very quickly. ☕
Jose Miller6 Jose Miller6 Newcomer
6 messages
joined Oct 2010
#1956 ·
Robert Nelson82 said:You and everyone else who’s fed up with the medical establishment clearly can't see the forest for the trees... if you're going to talk big, then stick to it and stop running back to those slippery, bribed doctors in the first place, because you've got this forum and various advocacy groups to help you heal instead.
As for the spitting, that's nothing more than a fundamental right and the strongest argument against Angela Wright and her little fan club. You get furious at any rational statement and try to silence anyone brave enough to say something so sacrilegious with every insult in your arsenal. Pathetic!!!

I totally agree with you that we need to draw a hard line somewhere, and this definitely isn't the place to be second-guessing a doctor's clinical decisions.
I don't think there's anything malicious in what you wrote, especially since I work in healthcare myself and hear stories every single day from patients who are so desperate they'll grab onto anything...
Even though Angela Wright started this thread, this isn't her private lounge, so she doesn't have the right to insult people or kick them out, so just stay put.😉
Robert Nelson82 Robert Nelson82 Newcomer
4 messages
joined Nov 2010
#1957 ·
Angela Wright said:Come on, prove you aren't just being pathetic. Go ahead—quote me. Show exactly where I gave any "expert" advice, where I insulted anyone, or where I supposedly made an argument without any actual facts behind it!

Honestly, I lose my mind every single time. It drives me insane when these self-righteous "moral authorities" act like anyone without a medical degree is completely clueless. They think we're all too incompetent to understand our own bodies or manage our own lives, and then they have the nerve to act like they have some divine right to make decisions for us! 😠

If you've got such a massive problem with something, just report it. Go ahead, flag me to the moderators—since apparently they aren't "unqualified amateurs" either, given that they’re the ones who pinned this thread to the top. I guess.

And really, what exactly was that supposed to be? I mean, what kind of "smart," "rational," or "expert" opinion was that you just shared here? I guess it wasn't much of anything.
So, cancer is supposed to be this heavy, terminal disease... give me a break. What a joke. 🙏 For an oncology PhD!

Stop trolling if you don't actually have anything smart or useful to say. Seriously. Just start your own thread and go whine there about how pathetic and misunderstood you are, or complain about stupid patients or whatever. I'm sure you'll find a bunch of friends who agree with you pretty quickly. ☕

So this is what happens when you try to vent all your frustrations on a forum!
Jose Miller6 Jose Miller6 Newcomer
6 messages
joined Oct 2010
#1958 ·
Dana Brown56 said:Hey everyone, I was wondering if anyone knows which pills we should pick up for my mom to help with her chemo side effects. She just had her first round today. She’s already taking Imunoahcc, and she also took some Tylenol tablets, or at least I think that's what they were called.

For nausea and vomiting, doctors usually prescribe Reglan, so if she hasn't been given any yet, you should probably ask her primary care doctor for a prescription. You used to be able to get Zofran on prescription too, but apparently not anymore, so you have to just buy it outright. Just a heads up, Zofran is way more expensive. Maybe check with the pharmacy about the price; I think you can just buy a single tablet to see if it actually helps her...
Keith Thompson Keith Thompson Newcomer
3 messages
joined Jan 2009
#1959 ·
Robert Nelson82 said:You and everyone else who’s been burned by so-called "professionals" are clearly missing the forest for the trees. If you're going to be so adamant about your stance, then stay consistent: stop running to those slippery, bribed doctors in the future. You have this forum and various advocacy groups to handle your care instead.

...no, no... don't let these feelings dictate your logic; I assume you'll manage to rise above that, given your academic background. In today's globalized world, we are all somewhat interdependent—nobody possesses absolute knowledge. However, when the word "professional" is used, it implies something specific: a high standard of competence. Nowadays, it seems fashionable for people to tack that adjective onto their existing titles, even though scientifically speaking, one cannot truly equate the two. Just as every soldier isn't a general, not every professional is actually a professional. It is quite simply just how things are. This is reflected in the old adage, "all that glitters is not gold," and I suspect you'll agree with me there. To identify the truth, necessary democratic oversight is required. These oversight bodies exist to protect the patient; their interest lies in safeguarding the sick and their rights, which might be a novel concept to some. Their goal certainly isn't to recommend how many liters of some toxin one should ingest to solve a problem (as Paracelsus noted, what is a poison to one may be a medicine to another). Ultimately, once you've been burned, you don't go reaching back into the fire...🤷
Sophia Ross53 Sophia Ross53 Member
20 messages
joined Jul 2010
#1960 ·
Dana Brown56 said:Hi everyone, I was wondering if anyone could recommend some pills to help my mom deal with chemotherapy side effects. She just finished her first session today. She’s currently taking Imunoahcc, and she also has some Tylenol (I think that's the name).

My mom uses Reglan, and it works pretty well for nausea. She takes it about thirty minutes before eating.

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