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Support for families dealing with cancer and other serious illnesses (Part II)

Started by Angela Wright · · 👁 7 views · 3.6K replies

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Participants Angela WrightTaylor Jackson14Edward Grant3stormytinker4restlessowl3Rachel Wood27silvercanyon7goldencrane3neonheron32Gregory Stewart4Brandon Lopez6copperbison4driftingsurfer14feralsurfer72Sandra Carter50Linda Patel21Maria Hughes67Nicholas MyersLisa Lopez75Bradley Scott2Kyle Lee7velvetmoose9Nancy Leemelloworca6 …
restlessowl3 restlessowl3 Member
28 messages
joined Feb 2014
#41 ·
Has anyone here dealt with the side effects from Dexamethasone? My mom is dealing with these intense muscle aches that just won't quit, and nothing seems to touch the pain. Every time we head to the ER, they just hand her a painkiller and tell her to suck it up.
Maria Hughes67 Maria Hughes67 Newcomer
3 messages
joined Feb 2014
#42 ·
"In the white silence of the snow
I walk and feel a barren pain.

I don't think any of this will last much longer.

Brighter than the snow beneath my feet,
my footprints will be swept away by everything.

And no one will ever know that I was even here, just passing through."

(Snow, Krleža)

😢
Maria Hughes67 Maria Hughes67 Newcomer
3 messages
joined Feb 2014
#43 ·
"Everything passes just like a shadow or a traveler passing by,
like a ship sailing through the waves—once it’s gone, you can't
find any trace of it or even the path it followed;
or like a bird taking flight, leaving absolutely no sign
of where it went, save for the faint sound of wings
beating against the air with all their might:
they spread their wings, soar away, and then there's nothing left
to mark their trail; or like an arrow released
in a specific direction, once the air settles, it's as if
the path vanished entirely. Our hopes have been
nothing more than chaff scattered by the wind, or smoke
swept away by a breeze, much like the memory of someone
who once simply walked past us."

(Wisdom 5:9-13)

😢
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#44 ·
restlessowl3 said:Has anyone dealt with side effects from Dexamethasone? My mom's muscles are hurting incredibly badly, nothing seems to touch the pain, and whenever we go to the ER, they just tell her to take a painkiller and shut up.

That isn't from the dex. You should consider if she picked up some kind of virus; everything is going around lately. Try Advil or Tylenol.
stormytinker4 stormytinker4 Member
18 messages
joined Feb 2014
#45 ·
Sandra Carter50 said:Can someone please explain what Pawpaw is? Also, does anyone know anything about treating this with baking soda?
My grandfather is taking Matrifen and Tramal. It has metastasized to his liver and generally throughout his abdomen. He's in intense pain. After dealing with long periods of constipation, he’s now stuck with constant diarrhea. He's irritable and struggling through severe pain. If anyone here has dealt with this specific diagnosis or these treatments, please share your experiences. Any advice is welcome; we're honestly lost on which direction to take. He was diagnosed with malignant melanoma back in 2008. He’s already gone through two surgeries and three rounds of chemo. Things are getting worse; he’s visibly wasting away, like a candle flickering out. 😢 ....

You can find more details about Pawpaw at the link below. A quick Google search will also turn up plenty of information and stories from people using it for treatment. Feel free to DM me if you want to chat more about it.

http://www.pawpawresearch.com/
stormytinker4 stormytinker4 Member
18 messages
joined Feb 2014
#46 ·
Angela Wright said:Pawpaw is an exotic fruit. Just like other "strange" plants and remedies, there are usually just old wives' tales behind them, lacking any published before-and-after data.
Regarding what's happening, we're talking about the fruit of a disgraced doctor and pure quackery. Simoncini carries a heavy burden of lives lost, and he's facing legal proceedings because of it. In fact, he was kicked out of the medical association in Italy.
As for alternative medicine, that falls under a different sub-forum. It doesn't belong here.

Pawpaw isn't some exotic fruit; it’s just a common fruit that grows right here in America, much like how apples grow around here. And it's hardly a "strange" plant. There aren't just old wives' tales floating around; there are documented results you can easily find online. Beyond the documentation, what I’m talking about comes from my own direct experience, so it isn't just hearsay. I get that people believe or don't believe certain things, but if you're going to take a stance, it would be nice to back it up with logic. From what I can tell, you don't have any actual experience with pawpaw. Don't strip people of their hope when there are various methods out there that have helped folks beyond just chemo and surgery. Not everyone responds to the same treatments; what worked for me might not work for you. Like someone smart once said—cancer is too serious a disease to rely on just one single method. I've already shared my experience here, and if those aren't positive results, then I don't know what they are. Every bit of progress and every success makes me happy, regardless of where it comes from, because it fuels hope and gives people faith. I think that's the most important thing.
Nicholas Myers Nicholas Myers Active Member
163 messages
joined Jan 2012
#47 ·
stormytinker4 said:It’s not about what people say or hearsay; there are documented results available quite easily if you look online..

In that case, I’ll need links to the specific scientific studies confirming this efficacy. Otherwise, I’ll have to view this post as a violation of the Health subforum rules, which clearly state: "The Health subforum is strictly tied to official (conventional) medicine, grounded in science."
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#48 ·
And here we go again...😁 every few months someone in this project feels the need to host a seminar on basic biology...😍
Quote:>
stormytinker4 says:
Pawpaw isn't some exotic miracle fruit; it’s just a common plant growing right here in America, just like an apple grows back home..
In my neck of the woods, we’d call that "all bark and no bite." 😁
And it’s hardly a "mystical" plant either... there aren't just old wives' tales floating around; there are documented results you can easily find online. Beyond the documentation, what I'm talking about comes from first-hand experience, so it's not just hearsay. I get that you might believe or not believe in something, but if you're going to take a stand, it would be nice to actually explain why. From what I can tell, you have zero experience with Pawpaw. Don't kill people's hope for recovery when there are plenty of different methods that have helped people outside of chemo and surgery... everyone reacts differently to treatments, and just because something didn't work for you doesn't mean it won't work for someone else. Like someone smart once said—cancer is far too serious a disease to rely on just one single method. I've already shared my own experience here, and if those aren't positive results, then I don't know what is. I celebrate any progress and any success, regardless of where it comes from, because it builds hope and gives people faith! I think that's the least important thing.

Look, if my comments here are supposedly "killing hope," then the plant must be magic🤷. By that same logic, please take note of everything documented on a random forum just because I say so and because it's my "experience"—there's no reason to doubt me, right? 😉 - garlic kills cancer cells! You can find endless documents verifying that! And besides, it's not even a plant from America; it grows in our own backyard. 👍

There is one catch, though: cancer is a genuinely serious and incredibly complex disease, and as such, understanding it requires at least a baseline knowledge of biological principles. Anyone who has done a quick Google search would know that "cancer" is just a broad umbrella term for various malignant cellular formations that behave differently, except for one thing: they all invade the entire organism. Since these cellular formations are so diverse, it is impossible for a universal cure for cancer to exist now, or ever, so we shouldn't be talking about such things in any context. Similarly, everything considered "conventional" has undergone extremely complicated and extensive research and testing due to the severity of the disease, moving through three phases: in vitro, in vivo, and clinical trials on humans—and that last part only happens if the first two stages, with all their sub-phases, yield satisfactory results. For example, when garlic was applied to a culture of colon cancer cells in vitro, the cells died off in record time and stopped dividing, but in vivo testing on a rhesus monkey was a complete failure...
There’s a massive difference between discussing immune support through complementary supplements that have actually undergone rigorous scientific study—which are just as vital to the fight against cancer as any primary medication—and pinning your hopes on a cure because you're eating aloe, pawpaw, garlic, or apples.

With that in mind, maybe try educating yourself a bit more thoroughly before you decide to call people out for "crushing hope." In reality, by doing that, you’re essentially feeding the very vultures who prey on people's ignorance, lack of information, and pure desperation. These scammers reach right into people's pockets by peddling "documented relevant spikes" on "relevant" websites, all wrapped up in fancy cellophane made of "Big Pharma conspiracies" and "shadowy elites," loaded with enough pseudo-scientific jargon to sound legitimate.
Have a nice day.🙂
Lisa Lopez75 Lisa Lopez75 Newcomer
2 messages
joined Feb 2014
#49 ·
Hey everyone, I'm reposting a question here that I originally put over in the Glioblastoma subforum...
Does anyone happen to have contact info for the user BEDNKACIN? I'm looking to pick his brain about some supplements his wife is taking.
I already sent him a private message, but haven't heard back yet. Looking at his history, his last post was way back in September 2013, so I'm not sure if he even checks his inbox anymore.
I would be seriously, seriously grateful for any leads! Also, if anyone else has solid advice regarding supplements for fighting glioblastoma, please let me know.
Thanks in advance!!
restlessowl3 restlessowl3 Member
28 messages
joined Feb 2014
#50 ·
Angela Wright said:That’s not from the Dex. Watch out, she might have picked up some virus; everything is going around lately. Try Ibuprofen or Tylenol.

It is from the Dex. Even though it’s supposed to be anti-inflammatory, it isn't working that way for her. When she was on Methylprednisolone, her muscles didn't ache like this. We've tried both Ibuprofen and Tylenol, but once the pain starts, it just doesn't let up for hours. She’s also incredibly swollen—I mean, she’s basically holding a ton of water. Is there any chance her primary care doctor would prescribe morphine patches or maybe some pills to help with the fluid retention, considering her diagnosis?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#51 ·
Dex affects fat metabolism, which usually leads to swelling in the face—that "moon face" look—and the torso. I personally haven't heard of anyone experiencing pain as a side effect. Methylprednisolone is also a corticosteroid. You really need to run this by your oncologist. Honestly, I’m out of advice for you.
driftingsurfer14 driftingsurfer14 Newcomer
1 message
joined Feb 2015
#52 ·
restlessowl3 said:Even though Dexa should act as an anti-inflammatory, that just isn't working for her. When she was on Methylprednisolone, her muscles didn't ache—but now, even with Ibuprofen or Tylenol, once the pain starts, it just won't quit for hours. Plus, she’s incredibly swollen—basically waterlogged. Is there any chance her primary care doctor would prescribe morphine patches or maybe some pills to help with the swelling, considering her diagnosis?

I don't have much intelligent advice to offer—I'd just say my dad felt like his lower legs had gone completely numb while he was on Methylprednisolone—so clearly, everyone reacts differently.
stormytinker4 stormytinker4 Member
18 messages
joined Feb 2014
#53 ·
Maria Fisher46 said:In that case, I'll need you to provide links to relevant scientific studies that back up that efficacy. Otherwise, I'll have to consider this post a violation of the Health subforum rules, which clearly state: "The Health subforum is strictly tied to official (conventional) medicine, grounded in science."


Over 100 articles and studies exist related to the benefits of these active compounds found naturally in the
pawpaw tree and its tropical relatives. Some recent clinical data looks promising. For instance, one study involving more than 100 participants suggests that pawpaw extract—which contains a specific blend of acetogenins—might help support healthy cell populations within the body.

A notable recent entry in this field comes from one of the leading experts, Professor Jerry McLaughlin, in the Journal of Natural Products, Volume 62, pages 504-540, 1999.

Oberlies NH, Croy VL, Harrison ML, McLaughlin JL. The Annonaceous acetogenin bullatacin is cytotoxic against multidrug-resistant human mammary adenocarcinoma cells. Cancer Lett. May 1 1997;115(1):73-79.
Zhao GX, Rieser MJ, Hui YH, et al. Biologically active acetogenins from stem bark of Asimina triloba. Phytochemistry. Jul 1993;33(5):1065-1073.
McCage CM, Ward SM, Paling CA, et al. Development of a pawpaw herbal shampoo for the removal of head lice. Phytomedicine. Dec 2002;9(8):743-748.
Ratnayake S, Rupprecht JK, Potter WM, McLaughlin JL. Scientific Evaluation of various parts of the pawpaw tree, Asimina triloba (Annonaceae), as commercial sources of the pesticidal annonaceous acetogenins. J Econ Entomol. Dec 1992;85(6):2353-2356.
Ahammadsahib KI, Hollingworth RM, McGovren JP, Hui YH, McLaughlin JL. Mechanism of action of bullatacin: a potent antitumor and pesticidal annonaceous acetogenin. Life Sciences. 1993;53(14):1113-1120.
Dr. Layne. Pawpaw. http://www.hort.purdue.edu/newcrop/c...ts/pawpaw.html. Accessed June 19, 2012.
Avalos J, Rupprecht JK, McLaughlin JL, Rodriguez E. Guinea pig maximization test of the bark extract from pawpaw, Asimina triloba (Annonaceae). Contact dermatitis. Jul 1993;29(1):33-35.
McLaughlin JL, Benson GB, Forsythe JW. A novel mechanism for the control of clinical cancer: Inhibition of the production of adenosine triphosphate (ATO) with a standardized extract of pawpaw (Asiminoz triloba, Annonaceae). http://www.pawpawresearch.com/pawpaw-trials1.pdf. Accessed June 19, 2012.
Coothankandaswamy V, Liu Y, Mao SC, et al. The alternative medicine pawpaw and its acetogenin constituents suppress tumor angiogenesis via the HIF-1/VEGF pathway. J Nat Prod. 2010 May 28;73(5):956-61.
Potts LF, Luzzio FA, Smith SC, et al. Annonacin in Asimina triloba fruit: implication for neurotoxicity. Neurotoxicology. 2012 Jan;33(1):53-8.
Pomper KW, Lowe JD, Crabtree SB, Keller W. Identification of annonaceous acetogenins in the ripe fruit of the North American pawpaw ( Asimina triloba ). J Agric Food Chem. 2009 Sep 23;57(18):8339-43.
Wood R, Peterson S. Lipids of the pawpaw fruit: Asimina triloba. Lipids.1999 Oct;34(10):1099-106.
Woo MH, Kim DH, McLaughlin JL. Asitrilobins A and B: cytotoxic mono-THF annonaceous acetogenins from the seeds of Asimina triloba. Phytochemistry. 1999 Mar;50(6):1033-40.
1. Hocking G. A Dictionary of Natural Products . Medford, NY: Plexus Publishing Inc., 1997;80.
2. Davidson A. Fruit—A Connoisseur's Guide and Cookbook. New York, NY: Simon and Schuster, 1991;123-124.
3. NNGA library. http://www.icserv.com/nnga/pawpaw.htm . Pawpaw and acetogenins.
4. University of Kentucky. http://www.pawpaw.kysu.edu . The return of the pawpaw.
5. Bruneton J. Pharmacognosy, Phytochemistry, Medicinal Plants. Paris, France: Lavoisier, 1995;156.
6. Johnson H, et al. Progress in New Crops. Arlington, VA: ASHS Press, 1996;609-614.
7. Zhao GX, et al. Additional bioactive compounds and trilobacin, a novel highly cytotoxic acetogenin, from the bark of Asimina triloba. J Nat Prod . 1992;55:347-356.
8. He K, et al. Additional bioactive annonanaceous acetogenins from Asimina triloba (Annonaceae). Bioorg Med Chem . 1997;5:501-506.
9. Zhao GX, et al. Biologically active acetogenins from stem bark of Asimina triloba. Phytochemistry . 1993;33:1065-1073.
10. Zhao GX, et al. Asimin, asiminacin, and asiminecin: novel highly cytotoxic asimicin isomers from Asimina triloba. J Med Chem . 1994;37:1971-1976.
11. He K, et al. Three new adjacent bis-tetrahydrofuran acetogenins with four hydroxyl groups from Asimina triloba. J Nat Prod . 1996;59:1029-1034.
12. Zhao GX, et al. The absolute configuration of adjacent bis-THF acetogenins and asiminocin, a novel highly potent asimicin isomer from Asimina. Bioorg Med Chem . 1996;4:25-32.
13. Zhao GX, et al. (2,4–cis)-asimicinone and (2,4–trans)-asimicinone: two novel bioactive ketolactone acetogenins from Asimina triloba (Annonaceae). Nat Toxins . 1996;4:128-34.
14. Woo MH, et al. Asimilobin and cis- and trans-murisolinones, novel bioactive Annonaceous acetogenins from the seeds of Asimina triloba. J Nat Prod . 1995;58:1533-1542.
15. Derevinskaya T, et al. Some problems of the quality of drug-technical raw material of Asimina triloba. Farm Zh . 1983;38:49-52.
16. Colegate S, et al. Bioactive Natural Products. Boca Raton, FL: CRC Press, 1993;15-17.
17. Ratnayake S, et al. Scientific Evaluation of various parts of the paw paw tree, Asimina triloba (Annonaceae), as commercial sources of the pesticidal annonaceous acetogenins. J Econ Entomol . 1992;85:2353-2356.
18. Avalos J, et al. Guinea pig maximization test of the bark extract from pawpaw, Asimina triloba (Annonaceae). Contact dermatitis . 1993;29:33-35.
Bradley Scott2 Bradley Scott2 Member
32 messages
joined Jul 2014
#54 ·
Has anyone heard anything about the experimental drug Dichloroacetate?
Here are a few links:
I came across this article discussing how DCA might be used in cancer treatment. It’s pretty interesting stuff, especially considering the debate it sparked back in early 2007 when it first hit the scene. It seems like a lot of people were worried because the drug was already off-patent, so there wasn't much financial incentive for big companies to fund more studies. Still, the idea that it could target how cancer cells use energy is worth looking into.
I found this interesting read about how certain natural compounds might play a role in fighting cancer. It’s pretty fascinating stuff if you have a moment to dive into it.
I was just looking through this information from the American Cancer Society regarding different treatment approaches. It’s quite a lot to take in, but it really helps clarify how things are being handled lately.
Does anyone here have any experience with this in America?

My dad had kidney cancer five years ago. Last year, it spread to his hip and pelvis—we managed to handle that part with radiation—but now he has metastases everywhere.
At 80 years old, I really feel like I have nothing left to lose.

I know it feels like every six months there’s some sensational headline popping up about a new miracle cure that's supposedly going to wipe out tumors once and for all.
I'm not really the type to fall for every little thing you read online, but after scrolling through dozens of different sites and blogs, you can't help but let your mind wander a bit.
Maybe there’s actually something to this after all.
Quote: more on Dichloroacetate
By Dr. Len May 14, 2010
Back in early 2007, a single research paper basically set the world on fire, sparking huge debates over using DCA to treat cancer. The real kicker was that because the chemical had been off-patent for ages, nobody really wanted to foot the bill for more research—there just wasn't enough money in it for investors.

So, DCA is making waves again. To be fair, the actual science being reported is pretty intriguing. But I suspect the headlines are mostly going to focus on the news that DCA might offer some benefit when treating aggressive brain cancer.

To keep it simple, DCA is a chemical you can actually buy online quite easily. It’s been used medically before to help manage conditions involving lactic acid buildup in the body. From what I've gathered, it doesn't seem to have many side effects, though there are some concerns regarding neurological issues.

Earlier studies involving animal models and lab benchwork indicated that DCA might actually be able to halt cancer cell growth. The scientific theory behind using DCA is rooted in the long-held observation that cancer cells depend on a specific metabolic pathway to fuel themselves—one that's pretty much unique to them. The idea is that if you can alter that specific pathway, you can effectively starve the cancer cells and stop them from growing. The research suggestion from the paper released back in January 2007 was that DCA managed to successfully shift that pathway, producing the intended impact on both individual cancer cells and transplanted tumors.


When this first came out, the experts were pretty quick to warn everyone not to get carried away or let their hopes get too high.
What’s really puzzling to me is how there seems to be so little drive to push forward with actual clinical trials for this drug. It’s strange because the results have been incredibly promising, starting in the lab, moving to animal models, and even showing potential in people who have taken it on their own. I should clarify, though—those individual success stories are just that, personal accounts. We really won't know the full picture until we see the data from the dozens of formal clinical trials that have finally started rolling in over the last few years.
What's the reason behind that?
So, this potential treatment is actually just a relatively simple chemical that can't be patented as a drug. You can order it in 25 kg drums from Kina for $100-$200 per kg, or get pharmaceutical-grade purity for about $150-$200 per 100 grams—which would cover about a four-month dose for an adult. Big pharma just can't make any money off of it.
To be honest, this combination has been used for decades to treat a rare metabolic disorder, and as far as anyone knows, there aren't any major side effects—especially when you compare it to the current medications out there, which can cause some neurological issues at higher doses.

Does anyone here have any experience with this experimental drug?

I think my dad is going to try it regardless, whether people have used it before or not, but I’d really love to hear if anyone actually has.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#55 ·
Bradley Scott2, almost all clinical trials are conducted and funded by Big Pharma. Right now, there are only two or three main drugs used for kidney cancer. Given how common this disease is, believe me, if there were solid results in both in vitro and in vivo testing, pharmaceutical companies would be throwing money at trials and production in a heartbeat.
I’m curious—has your dad been on Sutent or Nexavar yet? See, those are the standard treatments for metastatic kidney cancer, yet you haven't mentioned them once here.
I also suggest you take a look at these pages and search for ongoing kidney cancer clinical trials that might have openings for enrollment.
Taking a gamble on a compound where you have zero clue about dosing, zero control over the variables, and no idea what the contraindications might be is like playing Russian roulette with half a bullet left in the chamber. Trust me, losing the battle is one thing, but losing it in total agony with your quality of life completely destroyed—and knowing it's your own fault—is much worse.

EDIT: Here are the open clinical trials involving DCA, though I don't see any specifically for kidney cancer. So, it isn't quite true that pharma won't touch simple compounds. If they find it profitable enough to invest in head and neck tumors—where the incidence rate is way lower than kidney cancer—then I don't see why they wouldn't open a study for kidney cancer if the in vitro and in vivo phases showed success.
Actually, you're fixating on the headline because you missed my point in the previous post: it is impossible to have a single compound that successfully treats every type of cancer. Something that works wonders for colon cancer isn't necessarily going to work for breast cancer. It's a hell of a lot more complex than a layman typically imagines.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#56 ·
stormytinker4 said:Honestly, anyone using the internet today has no excuse for being uninformed. Anything else isn't worth discussing if you aren't actually engaging in the debate...

Look, stormytinker4, since you’re clearly such an expert on this compared to me, do me a favor: can you sort through those studies mentioned above and separate the ones done in vitro from the in vivo and human clinical trials specifically regarding cancer? There's a massive mountain of data here, and I simply don't have the luxury of time to dig through every single page—especially when some of these links look like they're advertising earwax removal shampoo.
Thanks!
And while we're talking about being "informed"—not everything you stumble upon online is accurate or even relevant. I'm sure we can agree on that much.
Kyle Lee7 Kyle Lee7 Active Member
149 messages
joined Nov 2007
#57 ·
stormytinker4 said:Honestly, anyone using the internet today can be misinformed... there isn't much point in commenting without actually engaging in the discussion...


We’re veering off-topic here, but…

Thanks to the internet, it’s easier than ever to be misinformed. Everyone has access to the web, but very few people have enough foundational knowledge—to distinguish nonsense and scams from actual, relevant information—or the ability to think critically.

The average American often has just a high school level of education, and unfortunately, even among those with college degrees, there’s a noticeable lack of logical reasoning, critical thinking, or basic scientific literacy. Very few people have even sat through an "Introduction to Scientific Research" course, to say nothing of anything else.

On the internet, anyone can write just about anything. They throw in a few technical terms and some sensationalist headlines, and that’s often enough to give seriously ill people false hope and part them from their money.

Even looking at little Nora’s trip to America—how many people actually realized this wasn't a standard medical procedure, but rather an experimental treatment (intended for those who truly have nothing left to lose)? At least that treatment followed professional protocols, was properly documented, conducted under controlled conditions, and the data gathered will actually help someone down the road.

And because oncological and autoimmune diseases are so difficult, if not impossible, to cure, we see a "miracle cure" popping up constantly, always framed as "based on my own personal experience." Listen, folks—even if you claim you were 100% cured, you don't actually know what caused it or why. Just because something happened *after* taking a certain supplement, fruit, vegetable, or juice doesn't mean the improvement had anything to do with it (logic, logic, logic!). Even if it did, there are so many variables that aren't accounted for—age, sex, medical history, other medications, supplements, diet, etc.—that a single person's story holds zero statistical relevance.

Because of my own diagnoses and those within my family, I’ve been offered countless "miracle" remedies that are supposedly "vetted by personal experience." We tried some just because they couldn't hurt us; I wouldn't dream of touching others (like marijuana oil—if you want, you can read a patient's blog about someone who didn't get cured but instead became addicted and quite unstable, along with his buddies telling the same fairy tales about how great their recovery is. Anyone reading from the outside can see they are dealing with the same, if not worse, problems than before, plus a newfound addiction).
Bradley Scott2 Bradley Scott2 Member
32 messages
joined Jul 2014
#58 ·
Angela Wright said:Bradley Scott2
I was wondering if your dad has been on unknown or unknown so far?
Actually, you're right—you're talking about treatments for metastatic kidney cancer, and I haven't mentioned any of those here yet.

Thanks for getting back to me.
Maybe I wasn't being clear enough.
My dad had cancer on his kidney five years ago. They had to remove the kidney, and everything seemed fine until about nine months back. Since then, he’s been dealing with this leg pain, though for a few months, he was convinced it was just sciatica (he actually had issues with his hip and pelvis). He’s always been pretty energetic for his age, but man, is he stubborn. You try to ask if he's seen a doctor or gotten any scans done, and he just brushes you off with, "I already took care of it, quit hovering."
To make a long story short, we ended up paying for his MRI out of pocket since the referral wouldn't get him an appointment for another year. They’ve done radiation on his hip now, but the cancer has spread to his liver and lungs—and who knows where else.

So, regarding those medications you mentioned...
Besides, those medications aren't even covered under the specialty drug lists yet, and the prices are absolutely insane. Even if we actually had the money, my dad probably wouldn't agree to it anyway.
And even if Medicare actually approved those medications, would you still spend the money? $100000 What’s the annual cost for an 80-year-old to get treatment?

From what I can see, these drugs mostly just block angiogenesis to stop the growth. It looks like they’ll need to be taken long-term.
Messing around with a combination therapy when you have zero clue about the right dosages, no control over the process, and no idea what the contraindications might be is like playing Russian roulette with half a bullet already in the chamber. Trust me, losing a battle is one thing, but losing it while suffering through an agonizing decline in your quality of life—knowing you're the one who caused it—is much worse.

DCA isn't exactly some obscure, unheard-of supplement.
It’s been used for quite a while now to treat a rare metabolic disorder in children. I know there are some people out there with firsthand experience regarding dosing and side effects, if anyone is willing to share.
For example, here:
Check out this page on DCA dosages: http://www.thedcasite.com/unknown_dosage.html

The most important thing to understand is that this combination works by triggering cancer cells to self-destruct rather than just trying to slow their growth. Cancer survives by essentially killing off its own mitochondria to prevent cell death. This drug activates those mitochondria, which then allows the abnormal cell to die off naturally—just like the normal process of old cells dying in our bodies. At a cellular level, the treatment is actually quite gentle.

Most clinical trials are pretty much run and funded by big pharma companies.
Even if the connection seems simple given how common this disease is, I truly believe that if they saw the results in lab studies and animal models, big pharma would jump at the chance to fund the trials and start production.

The main issue really boils down to Boldano.
Do you really think Big Pharma is out here playing the hero?
Just give it some thought.

I was wondering about the price for unknown—does anyone know roughly what it goes for? $9.75 Monthly.
How much does the monthly cost for unknown run? $12
But that's just how it goes.
The monthly cost for DCA therapy is around $200.$100

Just imagine that multiplied by tens of millions of patients over a year-long treatment course.
You get it. Corporations are staring down trillions in losses..
Wars start over even less than that.

I don't want to come across like some total conspiracy theorist.
I just find it incredible how they drag their feet on clinical trials for such an accessible and promising drug. Honestly, I can see exactly why those big corporations would want to stall things like that.
Instead of profiting from these incredibly expensive medications, there’s a chance they might actually make things worse for patients.

Here it is. I'm sorry, I don't quite understand what you mean by that. Could you clarify? It's you. Are there any open clinical trials involving unknown?I don't see anything mentioned here about kidney issues. So, it’s actually not true that the pharma companies refuse to work with simple compounds.

I've actually come across quite a few different studies, like these:
Check out this site: http://www.thedcasite.com/

I think you might have latched onto my headline because you missed my point in the last post—there’s no such thing as a "silver bullet" treatment that works for every single type of cancer. Something that works wonders for colon cancer isn't necessarily going to be effective for breast cancer. It’s all much more complicated than most people realize.

I get that there are still a lot of question marks surrounding all of this.
It might all end up being nothing, really. It could work for certain types of cancer, but then again, every patient reacts differently—some people just end up with an antibiotic allergy instead.

Has anyone here had any experience with unknown?
velvetmoose9 velvetmoose9 Active Member
163 messages
joined Apr 2020
#59 ·
restlessowl3 said:It seems like it’s the unknown, because even though it’s supposed to be anti-inflammatory, that just isn't working for her. Back when she was on the unknown, her muscles weren't acting up like this. We’ve tried everything from Advil to Tylenol, but once that pain starts hitting, there’s no stopping it for hours. Plus, she’s incredibly swollen—like, she’s just holding onto so much fluid. Is there any real shot her GP would prescribe morphine patches or maybe some pills to help get rid of all that water, considering her diagnosis?

The unknown can cause water retention, so sometimes doctors toss in a diuretic as needed, along with adjusting electrolytes if things get out of whack.
A quick clinical check—maybe forty-five seconds of looking things over—can actually give you some solid clues about whether there's significant fluid retention happening. Throw in some lab work, and you’ll have a better idea of what to prescribe to actually make the patient feel better.
Usually, an IV diuretic is your best bet here; if there’s any swelling in the intestinal walls (which happens more often than you'd think), oral diuretics aren't going to do much of anything.

I can't say for certain if the unknown is definitely the culprit behind all this, though, since I don't have the full clinical picture in front of me.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#60 ·
Bradley Scott2 said:Thanks for getting back to me.
....
My question is, does anyone here have experience with DCA?

Look, let’s start from square one.
unknown has been on the hospital formulary for metastatic kidney cancer for at least six years now. Since your dad has metastases from that exact same tumor—regardless of the fact that the primary tumor was removed— he actually meets the criteria for unknown. I suspect there’s just a bureaucratic loophole in the regulations here... basically, because his primary tumor is gone and he developed metastases later, 😉he's being sidelined. I've read plenty of stories about people with colon cancer where the primary tumor was completely removed, but then they developed liver metastases and were rejected for things like unknown. I even heard about a veteran with unknown who ran into similar issues at a major VA medical center recently. Technically, it seems like those who are diagnosed once metastases are already present might actually be luckier, because if you develop them later, you can qualify for treatment. Look, take his records to a private oncologist—someone like a specialist in a high-end clinic in NYC, for instance—who isn't tied down by insurance or hospital budget constraints, and see what they tell you. Then, take that expert opinion back to his current oncologist and demand answers.
Your old man is 80. If he responds to the treatment, he could live a very high-quality life for up to six years. unknown is an excellent drug. Expecting a total cure for metastatic cancer at his age through some divine miracle drug that works 99% of the time is just unrealistic, but that doesn't mean he can't live comfortably and enjoy his golden years alongside the tumor.

I don't think you grasp the difference between "relevant" studies and whatever else is out there. Everything actually scientifically relevant is on PubMed, which is where I linked you above. Anything else is either shady nonsense, like that website you linked (who takes responsibility if something goes wrong? them?), or it’s just in vitro and in vivo testing, which are just preliminary stages before controlled human trials can even begin—and that takes time.
As for sipping DCA straight from a glass based on some online dosage calculator because someone "said it helped"—that’s an alternative approach. Go find people with those experiences on the specific sub-forum for that. Posting stuff like that here violates the forum rules.

Listen, this is my most heartfelt advice, and if it were my own father, I’d do exactly this: the man is older, and you need to do everything possible to ensure he has quality time left. Messing around with something you don't technically understand—because the only "knowledge" you have comes from various hype websites designed to manipulate desperate people grasping at straws—is incredibly dangerous territory. You could end up causing him harm and spending the rest of your life riddled with guilt. My mother passed away when she was 57, and I still carry the heavy weight of regret because I fought her over a piece of chocolate when all she wanted was a taste. I can't even imagine how much worse it would feel if it were something more serious.

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