Support resources for families dealing with cancer and other serious illnesses

Hello,
My husband is about to start chemotherapy following surgery for colon cancer. His doctor prescribed: Leucovorin 40mg and 5 Fu 900mg, along with Reglan for premedication over a 5-day period. Has anyone here dealt with these specific medications? What kind of side effects should we be bracing for? Thank you for your help.

Hi there,
I’m looking for a mountain of information because, honestly, I feel like Alice in Wonderland right now...
My husband was diagnosed with a sarcoma located in his chest—running from the spine forward toward the shoulder area—less than a month ago. The initial tests pointed to PNET, specifically an Ewing sarcoma. Dr. Janevski performed the surgery at Jordanovac, where they removed a mass roughly ten by ten centimeters, along with two ribs, part of the collarbone, two blood vessels, and the entire brachial plexus. Because of that, he has absolutely no sensation or function in his right arm, though that feels like a secondary issue compared to everything else right now. We’ve been home for a bit, and while he’s recovering fairly well after the surgery, it’s been over three weeks and we still haven't received the pathology results. Word from the lab is that they aren't entirely sure what they're looking at—that it might not actually be Ewing after all—but those are just unofficial whispers since nobody has given us any formal news yet. We are completely lost. We want to figure out exactly what we're dealing with as soon as possible so he can start treatment. I'm wondering if it's even possible to take a sample ourselves to send to a lab outside of the US, because the waiting is terrifying. What are the top medical centers in Europe for tumors, and is there anything at all we can do before the official report arrives? Of course, we need the results to meet with an oncologist. His surgeon recommended Dr. Herceg, so I was wondering if anyone has experience with him as an oncologist? Any piece of information is precious to us; it's starting to feel like we can't just lean on the doctors and have to take matters into our own hands...

They probably sent the samples out for PhD analysis specifically because they're dealing with such a rare tumor; even our top-tier specialists often find themselves guessing. Since we’re undeniably looking at a sarcoma, there’s one common thread among all cases—they're usually pretty stubborn when it comes to radiation and chemo, making surgical removal of the mass the gold standard.
As far as Dr. Herceg goes, he and Dr. Santek at Rebro Hospital are easily the most competent doctors you'll find for rare tumors.

Still, I’d say give pathology a call and ask them officially what the status is with the PhD analysis. You can actually get a PhD done abroad by requesting the samples be released on a return basis and then shipping them overseas via mail. There are several facilities out there, so if you need help, just let me know and I'll lay everything out for you.

I have to give you a heads-up right now: because this is such a rare type of tumor, many of the drugs available overseas might not be accessible here in the States. It’s entirely possible that you'll hit a point where continuing treatment abroad becomes the best move, though it will likely come with a massive price tag.
My advice? Don't stress about the "what ifs" too far in advance. Just take things one step at a time as they come. I have some inside info and indirect experience with this, so feel free to reach out here whenever you need.

Angela Wright, thanks so much for the heads-up. It feels like the pathologists have been staining these samples over and over again without getting anywhere, and now they’re claiming they need to send it off for some kind of genetic "screening." Honestly, it feels like they could have just done this from the jump; if they realized after a week that identifying it was going to be such a headache, they could have just kept working on one sample while sending the other out for testing immediately.
Any bit of info helps us out!

How does anyone even find out about these kinds of medications, and is there any chance a doctor would actually suggest them?

It’s honestly heartbreaking how many people are still being pushed toward chemo today—just flooding the body with heavy toxins that wreck your entire system. I guess it's because mainstream medicine tends to look the other way when it comes to things they can't patent and make a killing on..

I mean, how many cases or clinics have tried different approaches that worked incredibly well, only to be bullied by big lobbies? They basically get told "don't use those methods" if they want to stay in the good graces of the establishment..

It’s just sad that most of us are essentially hostages to a small group of people who care more about power and profit than actually healing anyone..

If I could give one piece of advice, it's this: please, do your homework. Get informed about absolutely everything before you even think about starting radiation or chemo.
There are other ways out there..

We’re still right in the thick of it with our fight against pancreatic cancer—it's hit the whole pancreas and spread to the lungs, liver, and some lymph nodes. We've been fighting this battle for almost a year and a half now..

I am feeling a bit—actually, quite frankly—frustrated by the whole situation regarding "alternative" remedies and various supplements.
When you’re facing a tumor, you naturally start grasping at any straw that floats your way; it's human nature, really. Consequently, you end up completely overwhelmed by a sea of different alternative preparations, each one claiming to be the magic key to recovery...
The theory that mainstream medicine or the big pharma industry suppresses alternative treatments might hold water, or maybe it doesn't—from where I'm sitting, I truly can't say for sure.
On the flip side, there are certainly people in the "alternative" camp who see this as an easy way to make a quick buck... unfortunately.
The reality is that even some doctors actually recommend certain methods from this category...
What I’m really looking for is whether there exists an objective overview somewhere—perhaps a chart of available preparations including some kind of evaluation, the pros, the cons, the pricing, and so on... Is there anyone here who is a physician and could offer some professional insight or an opinion on specific supplements?
For instance, just the other day, I heard about Graviola, which is supposedly incredible...
I didn't intend to post this in the alternative subforum; I'm simply seeking an objective perspective on what among these preparations might actually help, and what is entirely useless (or even harmful)...

It’s the same story with people on the other side... the conventional medicine side, let's call it...
Just reading through this thread, you see so many people who dealt with doctors giving wrong diagnoses, missing the window for testing, or just guessing and having no clue what they're actually dealing with. And the answer is almost always chemotherapy, like it's some kind of magic cure-all for everything.
And nobody wants to talk openly about how chemo basically wrecks your entire body and, more often than not, actually makes things worse.

Then they hide behind the excuse that it’s all up to the patient and their own choice to proceed or not.

Just like there are plenty of success stories on one hand, there are plenty of failures on the other.

Everything is highly individual anyway, depending on the stage of the disease, and whether it’ll actually help someone or not; plus, diet plays a massive role in how things go.

What really gets to me is that every doctor we’ve talked to says things like, "Oh, she can eat whatever she wants," and stuff like that. It's honestly such nonsense. These doctors know perfectly well what fuels cancer and why it grows, and how certain foods can make the whole situation worse or cause extra pain and misery... but according to them, just eat whatever. Same old story.

I personally believe that certain alternative approaches definitely won't hurt, and sometimes a person just has to find, learn, and try things for themselves. I doubt any doctor is going to go out of their way to research custom solutions for every single patient, especially since most don't have the time—or maybe even the will—to educate themselves on anything outside their specific field or standard protocol.

Kimberly Cox58 said:Hi everyone,
my husband is about to start chemotherapy following surgery for colon cancer. His doctor prescribed: Leucovorin 40mg and 5 Fu 900mg, along with Reglan 1 amp as premedication, administered over 5 days. Does anyone have experience with these specific drugs? What kind of side effects should we expect? Thanks for any insight.

As far as side effects go, you’ll find everything listed right there in the drug information leaflet.
The most frequent issues are GI-related. Reglan should help out with the nausea, but honestly, it won't do much if diarrhea kicks in. Then there are the hematological side effects to watch for.

I see where you're coming from.
I ran into those exact same issues recently—it’s frustrating because, at this stage, conventional medicine feels like it's hit a wall, leaving us with very little to work with. As for the world of alternative treatments... honestly, there is just an overwhelming amount of stuff out there. I tend to be a bit of a skeptic myself—I don't jump on every trend—but I do think it's worth exploring the options. The real headache is figuring out which ones actually hold water.
That’s why I’ve been looking for some kind of objective overview, maybe a comparison chart or something similar... something reliable.

And I can't help but wonder—why hasn't anyone stepped up to actually regulate this whole market? It's a complete free-for-all.

nimblepanther14 said:I honestly don't know how to process this anymore. It feels like tumors are attacking us from every single direction.
This might sound like I'm joking, but I swear, it isn't.
I don't know how much more I can take, but I have to keep going.

1. My sister’s situation is pretty hopeless, as I described earlier.
2. My girlfriend's father was suddenly rushed into surgery for an intestinal tumor. (He barely escaped sepsis, by the way).
3. I just got my kidney biopsy results back—literally an hour ago. I'm sitting here at a coffee shop writing this while waiting to meet my primary care doctor.
- A follicular tumor on the kidney.
- A Warthin tumor on the salivary gland.
What is even happening? Mine is hopefully benign.

I'm at a loss... I'm holding it together because I have to, but man, I feel like snapping. If you know what I mean.

Regarding follicular carcinoma, there's a massive gap in information here. You need the ultrasound, scintigraphy, and hormone levels. You also need clinical history—things like local lymphadenopathy or whether there's any invasion into the muscle or trachea. They'll likely need to run additional scans on the skeleton and lungs too.

Kimberly Cox58 said:Good evening, I’m hoping someone can help me out. I’m a bit confused by my husband's test results. He had colon cancer surgery exactly one month ago. He recovered beautifully from the operation, but the pathology report shows a Dukes B tumor. Now he's starting chemotherapy. He had blood work done before chemo started, and I don't understand his GGT level—it's 60. During our talk with the doctor, he mentioned that this value suggests something is happening with the liver. I was in such shock at the time that I didn't ask for a specific explanation. Now I'm really curious, especially since they did a liver ultrasound and found absolutely nothing. Thank you.

The GGT result shouldn't be a major concern.

vividsailor7 said:Regarding follicular carcinoma, there’s a significant lack of data here—things like ultrasound, scintigraphy, or hormone levels. We also need a full history, looking at things like local lymphadenopathy or whether there's any invasion into the muscle or trachea. On top of that, they’ll likely want to run some additional scans on the bones and lungs to be thorough.

Aside from an ultrasound, I haven't actually had anything else done yet.
So, does this mean they're going to put me through more tests first, or am I heading straight into surgery?

coppermason13 said:How do you even find out about these drugs? Will doctors actually recommend them?

For certain sarcoma diagnoses, there are registered medications and specific treatment protocols available here in the States, but they aren't usually offered in multiple lines of defense. That said, there might be clinical trials suggesting other options out there. For some specific diagnoses, there simply aren't any viable treatment paths available domestically, in which case a doctor might suggest seeking treatment abroad, covered by insurance. However, that’s where things get messy—you can run into massive headaches due to all the bureaucratic red tape.
You're going to have to spend a ridiculous amount of time hanging out online, digging through studies, and scouring various sarcoma forums.
Doctors will tell you what they know, but let's be real: half the time, they don't even have access to the same information you can find yourself.

brisklynx62 said:It’s honestly tragic that even today, we see people being funneled en masse into chemotherapy—essentially being fed heavy toxins that tear the entire body apart. It’s the same old story: mainstream medicine consistently turns a blind eye to other options because, let’s face it, you can’t patent a natural remedy. If they can’t own the patent, they can’t make a killing off it, so they just pretend those alternatives don't exist.

Unfortunately, chemotherapy remains the only thing that actually delivers results when you're dealing with metastatic disease. Honestly, I don't think you realize that by the time someone is facing chemo, it means the disease has already spread significantly. We’re usually talking about very common malignancies here—lung, breast, cervical, colorectal cancer—and the best-case scenario is that these can be caught early or even prevented entirely. Sadly, it seems to be part of human nature to point fingers and play the blame game when things go south, rather than stepping back to ask if we're actually responsible ourselves due to how poorly we treat our own health.
Not all chemotherapy is created equal, and frankly, neither is every cancer. Malignant diseases vary wildly based on their cellular makeup, and that specific biological structure dictates everything from how you treat them to what the actual recovery prognosis looks like. On top of that, we’re seeing traditional chemo slowly become a thing of the past for a massive number of diagnoses. It’s being phased out by new generations of targeted, smart biological drugs that cause far less collateral damage to the rest of your body. We’re also seeing researchers diving deep into individualized gene therapy—the idea that eventually, every person will be treated with custom antibodies produced directly from the cells of their own specific tumor.

How many cases and clinics out there have tried unconventional therapies that worked perfectly, only to be bullied by various lobbies? It’s a pattern: they do something successful, but then the gatekeepers step in and "recommend" they stop using those specific methods.

Could you please list a few of those therapies for me? I’m sure it wouldn't be much of a stretch for you to pull them together, especially since you keep insisting that these cases are everywhere.

It’s honestly pathetic how most of us are just hostages to a tiny handful of people who care way more about lining their pockets and hoarding power than they ever will about actually healing people.

Are you suggesting that if you've got enough money, you can actually beat some of these "incurable" diagnoses?

My advice to everyone? Get your facts straight. Educate yourselves thoroughly on absolutely everything before you even think about stepping foot in a clinic for radiation or chemotherapy.
There are other ways to go about this...

Our fight against pancreatic cancer—which has taken over the entire pancreas and spread to the lungs, the liver, and several lymph nodes—is still going on. We’ve been in the thick of this battle for almost a year and a half now.

I couldn't agree more with your last point—honestly, I think you should take your own advice.
I might come across as blunt or even rude here, but as someone who has stared down an equally cruel and hopeless diagnosis, I’m going to take the liberty of being completely direct with you.
Your pretty stereotypical take—which I actually shared myself once—is based entirely on being uninformed about how drug research systems actually function. It’s just pure frustration because you can't do anything to help a loved one stuck in such a horrific state with a devastating diagnosis, so the easiest vent is to aim all that anger at Big Pharma. Unfortunately, my old man had bad luck; on top of the glioblastoma (which my mother caught) and ovarian cancer, he "picked up" the most vicious, insidious malignant diagnosis out there.
Similarly, I need to enlighten you with a realization you should face and accept right at the start of the fight, though in principle, it’s never too late.
With any malignant diagnosis, we can never, ever talk about a "cure." We are talking exclusively about extending the quality of life! That is simply biologically impossible. At any given moment, a person carries malignant cells that are dividing; if that division escapes control, it hijacks the immune system. Why and how the immune system collapses like that is likely due to a variety of factors, but the fact remains: once it happens to someone, it can happen again. Some get lucky and enter full remission, some live with a tumor, and some...

Research is an expensive, desperately difficult, and complicated sport. And yes, pharma is a business. Since it's a business like any other, its primary goal is profit, so they absolutely weigh which areas are worth their time and effort and which aren't. That is exactly why coppermason13, specifically her husband, will have much more limited and unequal treatment options compared to someone with, say, lizard cancer. This is because sarcomas are rare diseases, and there aren't enough patients to meet the legal requirements for a clinical study to prove a drug's efficacy.
Proving that something works involves three levels of evidence, each with its own sub-levels: in vitro, in vivo, and in humans. In each of those three stages, you have to prove it works thousands of times over to get even remotely consistent results. So, "proving" something isn't enough just because some lady down the street says it helped her sister-in-law.
Yes, chemotherapy is absolute garbage, but those millions of repetitions in clinical studies have shown specific results. That garbage actually works, provided it's administered by an educated professional who keeps things under strict control and faces criminal liability if they screw up.
Go ahead and ask someone from the alternative medicine crowd to sign off on a statement like that; you'll see exactly what they tell you.

People, please, educate yourselves on at least the basics of biology. Wisdom isn't always found in some grand authority; most of the time, we carry it within ourselves.

nimblepanther14 said:I get what you're trying to say.
I've been dealing with these exact issues lately... modern medicine hits a wall sometimes where it can't do much, and when it comes to alternative options, the field is a total jungle. I’m a skeptic by nature, but I honestly think it's worth exploring. The real question is: what actually works?
That's why I'm looking for an objective overview, maybe a comparison chart or something similar.

And I can't help but wonder why nobody has stepped in to regulate this market...

There isn't one, because there aren't any studies proving efficacy—that's why there's zero regulation. At the end of the day, most things labeled as a "study" are just dietary supplements that have nothing more than a single study proving they aren't toxic.

Instead, you should be hunting for complementary preparations that have a proven track record of boosting the immune system, because in the fight against cancer, the immune system is the MVP. Everything else is just a race against the clock and burning bridges behind you.

Also, I have to disagree with your take that medicine can't do anything right now. It absolutely can. Take that little girl whose case made headlines for young Nora's parents, for example. That girl and about a dozen others were pulled from the brink and brought into full remission from situations where, just a few years ago, kids almost always lost those battles.
Thanks to medical science, thousands upon thousands of women with breast cancer are in remission and still getting to hug their children, largely thanks to things like Herceptin. Because of medicine, a friend of mine who was diagnosed with lymphoma at 16 is a happy mother today; my uncle lived with prostate cancer for 25 years and made it all the way to 95 before passing away peacefully of old age...

Pick up the book "Anti-cancer" by Dr. David Schreiber. He’s a physician who was personally diagnosed with glioblastoma and faced the same hopelessness and chaos that any regular person faces—from the initial diagnosis through chemo to the search for alternative routes. He really shifts your perspective. Honestly, I wish I'd had it when I needed it most. Later on, I ended up reaching the same conclusions myself, just through a much more painful process.

Angela Wright, I'm right there with you... my only question is why we don't get any clear guidance on alternative supplements—you know, which ones might actually work and which ones are just useless noise.
Why isn't there any accountability for people peddling literal poison?
Wouldn't it be helpful if some sort of institute analyzed what’s being sold on the market—not necessarily by running their own clinical trials, but just to vet them.
They could simply state: Preparation X: potentially supports immune function. Preparation Y: no proven benefit. Preparation Z: harmful, etc.

It brings me back to when I was studying physiology using Guyton—I remember sitting there, quite fascinated, wondering how our bodies—even in perfectly healthy people—are constantly churning out these "suspicious" cells and how the system works tirelessly to hunt them down.

nimblepanther14 said:Angela Wright, I’m with you on that... I just can't wrap my head around why nobody ever talks about alternative treatments in terms of what actually works versus what's just useless.

Look, I can't prove anything without hard data from clinical studies. The moment something backs itself up with solid research, it stops being "alternative" or "pseudoscience" and officially enters the realm of medicine—real science. That’s why I’m telling you to stick to what’s been verified. Thank God there actually *is* proven stuff out there, even if a universal cure for cancer doesn't exist. Because of biological diversity, we’re never going to find one single magic bullet that fixes every single malignant diagnosis. Honestly, that undeniable scientific fact about biological variation should be your best filter; it’s the perfect tool to help you distinguish the good stuff from the garbage right from the start. 😉

Why aren't the people peddling poison being held accountable?

The laws exist, but our justice system is a complete joke. There are way too many loopholes in the books, which basically turns this country into a playground for every scammer out there.

Why wouldn't some research institute just step in and run an analysis on what’s being offered? It doesn't even have to be through their own primary studies—they could just evaluate the existing data.
He said it straight: Prep X is meant to boost the immune system. Prep Y? No proven benefit whatsoever. And Prep Z? That stuff is just plain harmful.

It’s because this stuff costs a fortune, and if there isn't a profit margin involved, companies simply won't bother investing in it. You end up with this messy intersection where cold, hard business interests collide head-on with fundamental human rights and basic needs, and frankly, it's a total mess. Every country has its own regulatory agency—like the FDA here in the States—whose entire job is to oversee food and drugs. But before they even look at something, there has to be a formal study proving that a product actually does what it claims to do. Most of this comes down to global cooperation; usually, if the US approves something, Europe follows suit, provided they're using the exact same criteria. Of course, they don't always play by the same rules.

I remember sitting there studying physiology from Guyton. It really makes you wonder about the sheer mechanics of it all—how our bodies, even in perfectly healthy people, are constantly churning out these "suspicious" cells, and how we’re perpetually locked in this internal battle to hunt them down and shut them down.

The human body is such a marvelously intricate mechanism, which is exactly why nothing in medicine is ever as simple as black or white.

Yes, I’m fully aware of the price tag attached to all this—it's significant—but honestly, these kinds of analyses would benefit everyone, from individual patients to the entire medical establishment.
Doctors rarely go out on a limb and say, "Don't take this specific medication; it's harmful."
In fact, some even offer endorsements—I remember one oncologist mentioning that, in his experience, a macrobiotic diet can actually make a difference for certain patients.

I truly hope that nanomedicine and these other emerging technologies eventually put an end to tumors once and for all. Though, sadly, for some people, the clock will have already run out. 😢

nimblepanther14 said:Yeah, I realize all of this costs money, but these kinds of tests would benefit individuals and mainstream medicine alike.
Doctors themselves rarely say, "Don't take XXX, it's harmful."
Some even suggest things—I know one oncologist mentioned that in his experience, a macrobiotic diet can actually have an effect on certain patients.

I really hope nanomedicine and other emerging technologies finally put an end to tumors. For some, unfortunately, it will be too late. 😢

Everything in this world would be useful if someone actually bothered to fund it, you know? It’s all about how the system is organized, and we all know what kind of mess our system is.

Macrobiotics isn't an "alternative"; it's just a way of eating. I forced my mother onto a macrobiotic diet, and she was miserable because she wasn't allowed to have chocolate. And guess what? She still had a relapse. Now, I feel like hell for having restricted her like that.
Besides, the founder of macrobiotics, Japanese Kushi, along with his wife and child, all died of cancer despite eating macrobiotically their entire lives. So, sure, maybe for some people it helps boost the immune system, but these things are incredibly individual.

Sadly, for about 16,000 Americans every year, it's already too late. But let's hope that besides research and pouring money into treatments, there will be more investment in prevention and public education. That's where the real success lies. Just imagine if every smoker decided to quit and actually stuck to it—the annual number of cases would drop by a quarter. And that’s not even mentioning if people stopped gorging on processed meats, started taking Omega-3 fatty acids, stayed active, and dealt with obesity and the uncontrolled sugar intake we all shove into ourselves, whether consciously or not.

Honestly, the state of public education is just abysmal.
That’s exactly why you see so many snake oil salesmen finding success in various fields—it's all due to a lack of real knowledge.
Take physical education in schools, for instance... what is even the point of it if they aren't teaching kids anything about nutrition or a healthy lifestyle? It feels entirely hollow without that foundation.
But, I suppose that’s a whole different conversation altogether..