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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 362 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 …
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1981 ·
Jose Miller6 said:You insult anyone who disagrees with you, labeling every differing opinion as pure nonsense.
basically driving away everyone here who actually knows more than you do. And as for insulting intelligence, don't worry—that’s not something you could ever pull off.

😍
What opinion?
We haven't heard a single actual opinion from you yet. Can we finally expect you to contribute an actual thought, or is that too much to ask?
Look above, this girl is rambling about some alternative crap and has already decided to head to Cuba. Since you've got nothing to say, I assume you're backing her up as the "expert" you think you are.
Instead of addressing the issue, you're just attacking me and the people who agree with me because your ego is clearly more important to you than the very problems that made this thread necessary in the first place.
frozenotter72 frozenotter72 Member
10 messages
joined Oct 2010
#1982 ·
Angela Wright, I get why this kind of alternative stuff makes your skin crawl, but I didn't make this decision lightly.
I'm no expert, but I need help, and I needed it yesterday.
It’s a cold hard fact that conventional medicine doesn't have a cure for Stage IV metastatic melanoma.
Over in the States, people started talking about Escozul back in mid-September, and since then, plenty of Americans have been heading down to Cuba to use it; I've been following their stories and gathering data. We actually asked a prominent American oncologist for his take, and while he wouldn't officially recommend it, he admitted it's shown promise in certain cases without side effects. He even mentioned that if it were someone close to him in this position, he'd be looking at options in Cuba too.

Maybe now you see why I decided to head to Cuba...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1983 ·
frozenotter72 said:Angela, I get why this kind of alternative stuff makes your skin crawl, but I didn't make this choice lightly.
I'm no expert, but I need help—not just today, but yesterday.
The hard truth is that mainstream medicine doesn't have a cure for Stage IV metastatic melanoma. That’s just a fact.
Over in Europe, people started talking about Escozul back in mid-September, and since then, a ton of folks have been traveling to Cuba to use it. I've been following their stories and gathering data. We actually reached out to a prominent oncologist for advice, and while he wouldn't officially recommend it, he admitted that in some cases it has shown promise without side effects. He even told us that if one of his own people were in this situation, he'd head to Cuba himself.

Maybe now you see why I made the call to go to Cuba.

I completely understand where you're coming from; we've all been in those shoes. But I just can't wrap my head around turning to something so murky. There isn't a shred of legitimate scientific evidence or a single peer-reviewed study to back this up—just anonymous testimonials without any verifiable proof. What hurts even more is hearing an oncologist suggest it. Honestly, it’s hard to trust the credibility of professionals who recommend things that fly in the face of basic medical ethics.

Please, think this through one more time. You could easily end up traveling all that way, blowing a fortune, and finding yourself unable to return home due to our legal system—assuming you don't run into trouble with the authorities first, since we're talking about an illegal substance.

Personally, I’d rather fight to get into an open clinical trial for melanoma overseas. I know people who have done exactly that and seen real results.
Here is the search engine: http://www.clinicaltrialssearch.org/search.php Just type "malignant melanoma" into the search bar.
Anthony Garcia19 Anthony Garcia19 Active Member
116 messages
joined Aug 2012
#1984 ·
Jose Miller6 said:You insult anyone who disagrees with you, calling their thoughts nothing but rambling
and stupidity. You’re driving away everyone here who actually knows more than you do. And as for insulting anyone's intelligence? Don't worry, that's not something you could ever manage to do.

I'm posting here for the first time, even though I've been lurking for days.

I started from page one and worked my way through to page 100-something, and I honestly haven't seen a single post from Angela Wright that felt even remotely insulting. If that was the vibe for the first hundred pages, I doubt the next two hundred are any different. A truly empathetic and selfless person doesn't just suddenly turn into someone who, quote, "insults everyone they meet."

I want to believe your intentions (and Robert Nelson82's too) on this thread are pure—because that's what this space deserves. I also realize it isn't easy to step out of your bubble and see things from the perspective of people living a completely different reality. Anyone working in healthcare, especially doctors, has a certain level of privilege when it comes to their own health or their family's. It makes it tough to truly grasp the desperation and helplessness an average person feels when facing a scary diagnosis and existential dread, especially when met with clinical indifference.

Having people with medical expertise chime in here is incredibly helpful. But it shouldn't come at the expense of belittling or dismissing the contributions of the non-medical folks. Especially those who have been here since day one and have done so much good.

This wonderful thread deserves to be a place for mutual support, understanding, and kindness—not a battlefield.
Nathan Barrett20 Nathan Barrett20 Newcomer
7 messages
joined Sep 2008
#1985 ·
Jose Miller6 said:It’s not even really about having access to the raw data or the lab results, you know? I mean, sure, you can stare at those medical reports until your eyes bleed, and on paper, everything looks crystal clear—it's all laid out in neat little rows and columns. But honestly, what does any of that actually *mean* for your actual life? That’s the part that trips you up. You need a pro to sit down and translate all that jargon into something human, something you can actually wrap your head around. So yeah, I’m totally with you on that. Robert Nelson82.
Look, let's be real—every single profession out there has its share of hacks and amateurs doing half-baked work. It’s not some exclusive privilege reserved just for the medical field, either. That service you’re talking about? It's nothing more than a total illusion, a complete facade. Our healthcare system operates on a fundamentally different set of principles, which is pretty obvious to anyone actually foolish enough to rely on it.

It’s way too easy to just sit back, roll your eyes, and claim the whole system is broken while you watch from the sidelines like some passive observer. Honestly, it takes actual guts—real courage—to step up. I can't help but think about those old-school doctors from back in the day, the ones who actually had a pulse, you know? They’d be out there running around with their medical bags, doing whatever it took to save lives, and people actually loved them for it. Now? It feels like most of them just hang their heads and look at the floor while patients are stuck waiting months just to get radiation therapy that could literally give them more time on this earth. If I were in their shoes, watching people suffer like that and doing absolutely nothing, I’m pretty sure I’d be losing sleep or dealing with straight-up PTSD. At the end of the day, the blame falls squarely on all those people who just stand by and watch it happen.
Amanda Perez47 Amanda Perez47 Newcomer
2 messages
joined Dec 2010
#1986 ·
Angela Wright said:You really need to rethink this whole situation because you could easily end up traveling all that way, burning through a massive amount of cash, and then find yourself completely unable to return home due to our strict laws—that is, if you don't get arrested over there first since we're talking about an illegal substance.

I've been lurking on this thread for quite a while now, but this specific debate regarding Escozul actually pushed me to finally register, as my family recently heard about this treatment and we are seriously looking into making a trip to Cuba.

Could you please explain where exactly you're getting your information about being barred from reentry or facing arrest in Cuba for possessing these substances—and if you have any links to back that up, please share them—because my mother, who is dealing with this illness, and I have spent countless hours scouring every corner of the internet for reliable sources and we haven't found a single mention of those risks, especially since so many people online claim they had absolutely zero issues at the border.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1987 ·
Amanda Perez47 said:I've been lurking in this thread for a while, but this whole debate about Escozul actually pushed me to sign up. To be honest, we recently heard about this treatment too, and we were looking into making a trip down to Cuba.

Can you please explain where you're getting the idea that we can't bring it back home? You're claiming we could get arrested in Cuba for possessing illegal substances—if you have any links, please share them. My mother is sick, and the two of us have spent countless hours scouring every corner of the internet for info, and we haven't found a single thing supporting that claim. In fact, most people online say they had zero issues at the border.

The link I shared explicitly states that the drug is illegal in Cuba. Knowing how strictly they enforce their laws there, I wouldn't dream of risking such a long, expensive trip on a whim.
The U.S. government prohibits the importation of medications or substances that aren't registered or approved for sale within the United States. Here is the regulation outlining the specific ways one might legally bring items in via emergency import. However, since those rules require the drug to be approved by recognized global health institutions and backed by relevant studies confirming efficacy—plus a written recommendation from a doctor—there is absolutely no way to do this legally.
We are talking about animal venom that hasn't been properly tested; nobody actually knows how it interacts with the human body. Giving this to someone is essentially playing Russian roulette. It’s like letting a rattlesnake bite you just because you heard snake venom can be used to make medicine. There are no scientifically defined protocols or standardized dosages here; it looks like a totally primitive, uncontrolled process.
There are legitimate, peer-reviewed resources like PubMed where you can read actual scientific studies and research from around the world. If you look through their database, you won't find a single word regarding this substance.
frozenotter72 frozenotter72 Member
10 messages
joined Oct 2010
#1988 ·
I don't get why the administration in Castro would even issue a warning about the dangers of Escozul when every single hospital and research institute in Cuba is state-run. If they're conducting studies, it implies Castro gave the green light for them to happen in the first place.

I'm still weighing the pros and cons of this medication, but I can't wrap my head around how people are traveling from Italy to Cuba en masse just to smuggle the stuff back home... I also read that the embassy helps Americans get their hands on it through official channels.
???
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1989 ·
frozenotter72 said:I don't see why the administration there would issue a warning about the dangers of Escozul when every hospital and institute in the country is state-run. If research is being conducted, it implies the government has sanctioned that investigation.

I'm still weighing the arguments for and against this remedy, but I can't wrap my head around how it's possible for Americans to travel en masse to get this stuff and bring it back home, or how I've read that certain foreign embassies help their citizens secure the medicine while traveling abroad.
???

I think you missed the point of the link I shared earlier containing Dr. Weill's article, where he digs a bit deeper into the investigation. I’ll translate the gist for you here—I don't have the bandwidth to go through it all myself, and honestly, the reality of the situation is pretty obvious at first glance.
According to a statement from the director general of the US Food and Drug Administration, some laboratory research has been done on Escozul. But these studies were described as "preclinical," and not involving human subjects. I understand that some pharmacological and toxicological studies were carried out on animals. These are the usual first phases of research to determine whether or not a new product causes harm and how it behaves pharmacologically. But US health authorities insist that they have not authorized the production or use of Escozul because they have no evidence for its safety and efficacy in the treatment of disease in humans.
It would be particularly foolish to pin your hopes on Escozul or other unproven cancer therapies in place of using treatments known to be effective.

Translation:
Per the statement from the director general of the US Food and Drug Administration, some lab work on Escozul has taken place. These studies are classified as preclinical, meaning they weren't performed on people. From what I gather, certain pharmacological and toxicological tests were done on animals. This is just standard early-stage testing to figure out if a substance is toxic and how it interacts biologically. Regardless, US health authorities insist that they have not authorized the production or use of Escozul because they have no evidence for its safety and efficacy in the treatment of disease in humans.
It would be especially reckless to pin all your hopes on Escozul or any other unverified cancer therapy instead of sticking with treatments that have actually proven themselves effective.

There you go—that’s the medical perspective. But speaking as a layman who has been dealing with these issues for a while and has even wandered down those alternative paths myself, wouldn't I do anything to save my own mother's life? Luckily, somewhere deep in my brain, I still carry a piece of wisdom from my great-grandmother—a wise, brave, and somewhat uneducated woman who used to say: "Lord, give us health, but above all, give us common sense." You have to stay rational, informed, and educated about these things, because mistakes here can be fatal.
As for those people traveling abroad to get it, it's just as possible as it is that someone who killed three people using MMSom—someone who was stripped of their medical license and faced criminal charges—is still profiting off desperate people praying for a miracle.
You have to realize that if you’re looking for something "proven" and effective that exists outside the realm of actual science—outside the rigorous studies conducted under strict standards to ensure people don't get hurt—you're chasing a ghost. It's all just smoke and mirrors, and frankly, you're gambling with your own life and taking full responsibility for the fallout.
Amanda Perez47 Amanda Perez47 Newcomer
2 messages
joined Dec 2010
#1990 ·
Angela Wright said:I honestly don't think you people actually read the link I posted earlier, which includes Dr. Weill’s article where he really digs into the investigation, so I'm just going to lay out the translation for you since you clearly need it, though you should probably just Google it yourselves if you had any sense, but frankly I don't have the time to waste when the reality of the situation is staring everyone right in the face.

Translation:
According to statements from the US Food and Drug Administration, some laboratory research has been done on Escozul. These studies are described as preclinical and were not conducted on humans.From what I gather, certain pharmacological and toxicological studies were performed on animals, which is just the standard first phase of testing used to determine if a substance is harmful and how it behaves pharmacologically. However, US health authorities insist that they have not authorized the production or use of Escozul because they have no evidence for its safety and efficacy in the treatment of disease in humans.
It would be incredibly foolish to pin all your hopes on Escozul or any other unapproved therapy instead of sticking to treatments that have actually proven their effectiveness against cancer.

Thanks for the response, but I didn't need a translation because I can actually read and I know English perfectly fine, and let me be clear that I am fully aware we are all acting on our own responsibility—because who else would we rely on anyway?—and the reason I asked for links wasn't because I couldn't Google them myself, but because I was looking for specific information that I haven't been able to find even after weeks of searching online, so thanks for the medication regulations, but I get that Escozul isn't some miracle cure, and explaining my actual motivations for being interested in this or why someone would go to America is way too much of a long-winded conversation for me right now, as my only goal here was to gather enough facts to reach a logical conclusion and make an informed decision, which is exactly what your association claims to stand for based on everything I've read on the previous pages.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1991 ·
Amanda Perez47 said:Thanks for the reply. I didn't need a translation; I can read and write just fine, and my English is solid. It’s also perfectly clear to me that we are all acting on our own responsibility—I mean, whose else would it be? I wasn't asking for links because I can't use Google; I was looking for specific information that I couldn't find even after weeks of searching on my own. That regulatory guide for medications is helpful, so thanks for that. And look, I get it: Escozul isn't some magic cure-all, and explaining the whole motivation behind why people seek it out or why they end up traveling to Cuba right now is way too much of a rabbit hole for me to dive into today. My goal was simply to gather as much data as possible so I could draw my own conclusions and make an informed decision, which, from what I've gathered from the discussions on previous pages, is exactly what your association stands for.

The association’s stance is simple: if there isn't a relevant scientific study available—and let's face it, they are incredibly easy to find online via specialized journals and professional databases—then any attempt to dig "deeper" into dubious theories is nothing more than a massive waste of time. In our view, a far greater, yet solvable, issue is how often Americans are unable to participate in legitimate, promising medical trials, particularly when dealing with rare tumors.
We will never, ever support an "alternative" that is simply unverified.
Our mission is to provide people with all the information and expertise we possess, while maintaining the belief that everyone has the absolute right to decide their own path.
Complementary medicine is a different matter entirely. For something to actually be considered complementary, or to become an officially registered medication for a specific condition, there are clearly defined global criteria: multi-phase studies, strictly defined protocols, and precise dosages for drugs, supplements, or whatever else is being used.

And please accept my apologies if my translation came off as offensive. I never intended to imply you were illiterate; I was just trying to be helpful.
Regardless, I wish you the best of luck and hope you stay strong in your fight.
nimbletrucker85 nimbletrucker85 Newcomer
1 message
joined Dec 2010
#1992 ·
I realize this is slightly off-topic, so please excuse me for bringing it up here, but I wasn't quite sure where else to turn.

A close friend of mine is currently making her way back home from Canada, and she’s trying to figure out the logistics regarding healthcare. Specifically, she wants to know if Americans are entitled to free health insurance upon their return to the States, or if there's a monthly premium she should be budgeting for if it isn't covered.

Since I haven't lived in the US for an entire year now, I'm a bit out of the loop on these specific regulations, so I can't give her a definitive answer—though, truth be told, I could probably use some clarity on this myself at some point.

Thanks in advance for any insight you can provide.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1993 ·
nimbletrucker85 said:I know this is off-topic, so please bear with me—I wasn't quite sure where else to post this.

A friend of mine is moving back from Canada and wants to know if American citizens are entitled to free health insurance upon their return, or if there's a monthly cost involved.

I haven't lived in the States for a full year now, so I'm out of the loop and can't give her a straight answer. Honestly, I could probably use the info myself sometimes too.

Thanks in advance!

Your best bet is to call Medicare directly for the specifics:
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1994 ·
Since I’ve been getting bombarded with questions about Escozul from other association members, I decided to reach out to a molecular biologist—someone who actually knows her stuff when it comes to this kind of science—to get a professional take on the matter. Here is what she had to say:
If you search Medline, you won't find a single article regarding Escozul. There is some research on the cytostatic effects of scorpion venom, but nothing specifically concerning the components used in Escozul. All the studies involving scorpion venom and cancer have been conducted in vitro—meaning they were done on cell cultures. While a cell culture is a decent indicator, it means absolutely nothing without in vivo testing. Plenty of substances show cytostatic properties in a petri dish but turn out to be far too toxic for actual use in a living body. That is why any potential drug undergoes a strict progression: first tested on cells, then on small mammals like rodents, followed by primates, and finally on humans during clinical trials (conducted with informed consent, obviously, not forced). Despite how similar we are to animals, our metabolic pathways differ significantly. A perfect example is Thalidomide, which was completely safe in rodent models but ended up causing tragedy for thousands of pregnant women.

So, my takeaway is this: scorpion venom has shown cytostatic activity in cell cultures, which is interesting, sure, but it is nowhere near enough to even consider it a pharmaceutical product, let alone a cancer treatment. Even the Cuban government has distanced itself from it.http://havanajournal.com/culture/ent...ent-from-cuba/

I found this insightful article by someone who makes a lot of sense here: http://findarticles.com/p/articles/m...2/ai_n6160489/

Bottom line? Trying this on yourself is anything but a sane move.
Sophia Ross53 Sophia Ross53 Member
20 messages
joined Jul 2010
#1995 ·
Jose Miller6 said:You insult anyone who disagrees with you, labeling every different perspective as mere rambling
and stupidity. You're driving away everyone here who actually knows more than you do. And as for insulting intelligence? Don't worry, that's not something you'll ever have to deal with.

Instead of using your knowledge to actually help people, you just snap back without any real arguments, much like our politicians. Does anyone really care about that? We are all here because we're going through an incredibly difficult time, and we need whatever support we can get. Can't you show a little humanity? Don't waste our time or our energy. If you have something helpful to say, please do. Every bit of advice matters. Otherwise, just leave while we’re still being civil.
Matthew Taylor6 Matthew Taylor6 Newcomer
2 messages
joined Dec 2010
#1996 ·
I’m done with the treatment cycle—truly. I just don't have the energy for the endless hospital visits anymore, nor the will to push forward. I’ve even started skipping my medications because, frankly, what's the point? It's only when the pain becomes absolutely unbearable that I make a quiet pact with myself to try and manage things before everything spirals further.
My family remains in the dark. I can't find a compelling reason to tell them—nor do I know how to begin such a conversation.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1997 ·
Matthew Taylor6 said:I’m done fighting this. I just don't have the energy left for hospital visits or endless appointments. I can't find the will to keep pushing forward. Honestly, I’ve started skipping my meds because I just don't care anymore. It’s only when the pain hits a breaking point that I promise myself I’ll try to do something to help before things spiral even further out of control.
My family doesn't know. I honestly can't think of a single good reason to tell them, and I have no clue how I would even bring it up.

What exactly is going on here?
Look, nobody can force you to do anything if your heart isn't in it. But you also have to face the reality that treatment is brutal—it's rarely easy. In this process, you're going to stumble, you're going to fall, and that's exactly when you need someone there to grab your hand and help you get back up to keep fighting. That’s why what you're feeling makes sense.
Life is a constant struggle for every single breath, for every single heartbeat. It's usually only when we're sick that we truly realize how much of a fight it actually is.
Carl Morales48 Carl Morales48 Newcomer
2 messages
joined Dec 2010
#1998 ·
I’ve been lurking on this forum for ages now. Honestly, most of us ended up here because life decided to throw a massive curveball in the form of illness. So, let’s just do ourselves a favor—let's not waste our precious energy or keystrokes arguing and fighting with each other. Above all else, I want to give a huge shout-out to Angela Wright. She’s been here since day one. People have been coming and going constantly, but she’s the one who actually had the guts to step up. Even when she didn't have to, she was right here helping out and sharing advice. Let's respect someone like her for everything she does for this community.

Angela, my mom is still fighting, though it hasn't exactly been a walk in the park. She had a second surgery to clear things out, but the primary tumor grew back along with some metastases. Recovering this time around is way harder than the first time. Seriously, you wouldn't believe the crazy lengths I've gone to just trying to get access to DCvax; I haven't even come close. It's available in the US, Switzerland, Italy, even Austria... but nothing works for us. There's this one hospital in Switzerland that treats their facility like a freaking fortress—it's impossible to get an appointment.

Tonight, I wanted to poll everyone: has anyone actually used Biocil or heard anything about it? I stumbled upon a mention of it on page 35 of this thread, and then today, a coworker told me about it. Does it actually help? Does anyone know anything at all? It’s honestly insane—my coworker dropped 600 bucks on this thing. What even is it? Does anybody have the scoop?
mellowpilot93 mellowpilot93 Newcomer
3 messages
joined Dec 2010
#1999 ·
Hi everyone. To get straight to the point, my dad was just diagnosed with colon cancer. We still have a CT scan to go through and we're waiting on cytology results for more specifics, but... surgery is definitely on the table. I'm not from the local area and I want to... try to find him the absolute best surgeon possible for the actual procedure. Does anyone have any recommendations?

thanks
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2000 ·
Carl Morales48 said:I’ve been hanging around this forum for a long time; I showed up here just like everyone else who was driven by pain and sickness. Please, let's not waste our energy or our keystrokes arguing and fighting. Above all, I want to give a shout-out to Angela Wright because she’s been here since the very beginning. People have come and gone, but she’s the one who had the strength to step up—not just when it was necessary, but always being there to offer help and advice. Let's respect someone like her for everything she's done and continues to do for us.

Angela, my mom is still fighting, though it hasn't been going very well. She had a second surgery to clear things out, but the primary tumor grew back along with metastases. Recovering this time around is much harder than the first. Honestly, you wouldn't believe the lengths I've gone to just to try and get access to DCvax—it's not even worth mentioning. It’s available in the USA, Switzerland, Italy, even Austria... but nothing. There’s a hospital in Switzerland that treats it like a military fortress; it's completely inaccessible.

Tonight, I want to ask everyone who has used it or heard stories about Biocil: does it actually help? I found some info on page 35 of a thread, and today a coworker told me about it. Does anyone know anything? It’s honestly criminal that my colleague paid 600 bucks for it. What even is this stuff? Does anyone have any insight?

I feel for you regarding the DCvax situation. 😢
When it comes to Biocil, stay far away from anything marketed as a "supplement" that claims to cure cancer. First off, there will never be a universal "silver bullet" for all types of cancer because malignant diseases vary wildly in their formation and other parameters that dictate how targeted therapies work. Biocil is made from herbs that might have proven benefits for certain minor ailments, and sure, it got clearance to be sold as a supplement, which means it passed basic toxicity checks. But man, dropping that kind of cash on it is pure insanity. You'd be better off grabbing a botany book and foraging the same plants yourself in the mountains. I checked three major global databases that track research and studies—PubMed, Medline, and Cochrane Reviews—and there isn't a single word about it. That means there is zero scientific evidence to back up the claims being pushed by the marketing teams at Bicilov.

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