Supplements and a sincere question... - Advanced Prostate...

Advanced Prostate Cancer

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Supplements and a sincere question...

kayster7 profile image
37 Replies

Hello -- I do tons of research and I take a variety of supplements. I research every supplement I take on reputable website (PubMed, NIH, etc.) All of the supplements are listed there and EVERY supplement I take has been researched for PCa. Always, the researchers note in their findings that this "results look very promising and more research should be done." Most of the research is both inVitro and inVivo.

My question is this: why is there never any further research done? It seems they get to one point, prove they're onto something and then drop it.

I can't figure it out, but can only suspect what we hear... there's no money to be made in naturally occurring supplements, etc. So they don't pursue further research.

Any insights would be appreciated.

God bless all.

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kayster7 profile image
kayster7
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37 Replies
Magnus1964 profile image
Magnus1964

In most cases the research is done by a university with tax payer money. Big Pharma then takes the research and attempts to produce a drug from it. Many are unsuccessful.

kayster7 profile image
kayster7 in reply to Magnus1964

My thoughts exactly. So perhaps further research on the supplemental herb (or whatever) is the key to the cure? Seems Big Pharma wants to reproduce in synthetic form what nature has already created. In its natural (and cheap) form, it worked.

Thanks for your reply. Best.

Magnus1964 profile image
Magnus1964 in reply to kayster7

Exactly, most drugs are derived from natural substances, i.e. statins for cholesterol is derived from red rice yeast. The list goes on and on.

I would not look for a "cure" in supplements. Some can keep PSA down for a time. But just like ADT drugs they also fail. So you take them, then move on when they fail.

Tall_Allen profile image
Tall_Allen

You are off to a good start. A study in a reputable peer-reviewed journal is certainly better than some random Internet report.

However, before putting those drugs (supplements are drugs) in your body, there is a lot more that you have to know (even if the drugs are of reliable quality, and don't interfere with other therapies).

The key thing that most amateur researchers miss, and you are asking about (to your credit), is "levels of evidence." The in vitro or in vivo studies you are looking at are only used as screeners. They are at the lowest level of evidence (Level 5) and should never be relied upon to make treatment decisions, A further refinement is GRADE:

cebm.ox.ac.uk/resources/lev...

ncbi.nlm.nih.gov/pmc/articl...

You should understand that for every 10,000 compounds screened->250 (2.5%) are entered into a preclinical study -> 5 (2%) are tested in clinical trials -> 1 gets FDA approval

The way I describe it is: everything works in mice. The mice used in those studies are specifically bred to react to even the weakest substance. Unfortunately, humans are not lab mice. Unless there is a very strong positive signal from lab studies (and no negative signals) and there are no contraindications, there is no interest in taking it further - the failure rate is just too high. Still, many supplements have been clinically tested (sometimes financed by government agencies, universities, NGOs, and even food manufacturers). So far, almost all have failed. The only one I know of that hasn't failed is sulforaphane. But even there, the study was small, and there are reasons to avoid it in men undergoing radiation or immunotherapy.

BTW- you seem to be ignoring the fact that the supplement industry is a multibillion dollar industry. They contribute to the campaigns of many legislators to keep them outside of FDA control. They have little interest in actually proving that their supplements do what they suggest it does- they know it is more likely to be proved ineffective and unsafe.

dhccpa profile image
dhccpa in reply to Tall_Allen

TA, you mention that many of these have been tested by government agencies, universities, etc. and have failed. Why is it that the amateur researchers who find the mice studies then miss the reports from the later studies? Is there a separate database of those followup studies that show failure?

Graham49 profile image
Graham49 in reply to dhccpa

Any such reports by drug companies would be kept in house, otherwise they might be useful to competitors. Drug companies are not only interested in whether a substance might work but also whether it is patentable.

Tall_Allen profile image
Tall_Allen in reply to Graham49

Nothing of what you say is true. Pure fiction on your part.

Graham49 profile image
Graham49 in reply to Tall_Allen

Ok then, give me some references to the published reports on follow ups to mice and invitro studies.

Tall_Allen profile image
Tall_Allen in reply to Graham49

Sure. For example on Green tea/EGCG, here's a 2012 mouse study:

ncbi.nlm.nih.gov/pmc/articl...

And here's a 2015 randomized clinical trial:

ncbi.nlm.nih.gov/pmc/articl...

Graham49 profile image
Graham49 in reply to Tall_Allen

These reports are not by drug companies.

My original statements: "Any such reports by drug companies would be kept in house, otherwise they might be useful to competitors. Drug companies are not only interested in whether a substance might work but also whether it is patentable." stand.

Tall_Allen profile image
Tall_Allen in reply to Graham49

You imagined that drug companies sponsored studies that they keep in-house, offering not a shred of evidence for such a claim. Drug companies are indeed in business to make money off of patentable medicines - on that much we agree. In fact, why would they ever conduct a study on a substance they could not potentially make money off of, let alone suppress the results? Imagining Big Pharma conspiracies to conduct and suppress studies of unpatentable drugs is not helpful to patients.

Graham49 profile image
Graham49 in reply to Tall_Allen

Of course drug companies do studies in house and keep the results to themselves. On the basis of these studies they decide whether to spend a lot of money on developing particular drugs. I did not imagine Big Pharma conspiracies. This is just good business sense. You have not given a shred of evidence that my original statements are wrong.

Tall_Allen profile image
Tall_Allen in reply to Graham49

When you make up a thing, it doesn't make it true. Do you have any proof of your wild imaginings? Do you understand that it is illegal anywhere in the world to conduct a clinical trial without approval from an independent review board and that the protocols for such trials have to be made public? If any drug company conducted such a clinical trial, they are not allowed to hide it, as you imagine. Doctors working for a drug company would lose their license to practice medicine if they violate the Helsinki Convention, and it would put the company out of business:

wma.net/policies-post/wma-d...

Graham49 profile image
Graham49 in reply to Tall_Allen

You are the one imagining things. I never mentioned the words "clinical trial".

Tall_Allen profile image
Tall_Allen in reply to Graham49

"Ok then, give me some references to the published reports on follow ups to mice and invitro studies."

Graham49 profile image
Graham49 in reply to Tall_Allen

We have come full circle!

There are very few follow up reports to mice and invitro studies in the public domain except a few such as the green tea one you posted. This was exactly the point made by kayster7.Going back to the original question by kayster7: "Why is there never further research done? It seems they get to one point, prove they're onto something and then drop it".

I still think my reply to kayster7 was a reasonable one:

"Any such reports by drug companies would be kept in house, otherwise they might be useful to competitors. Drug companies are not only interested in whether a substance might work but also whether it is patentable."

Of course I was not referring to clinical trials.

Tall_Allen profile image
Tall_Allen in reply to Graham49

There are many follow ups in the literature. That was just one. They are always ineffective when tried clinically. What are the secret f/u trials you imagine (with no evidence) that drug companies are hiding from you? Kayster7 was asking about clinical trials, what are you now talking about?

Graham49 profile image
Graham49 in reply to Tall_Allen

You are imagining things again. 1. I never used the word trials. 2. You think you can read the mind of kayster7. Kayster7 asked about further "research".There are some follow ups but many missing. Over and out.

Tall_Allen profile image
Tall_Allen in reply to Graham49

You used the word "studies." What kind of studies or research are you imagining? And where is the proof that such "studies" have been conducted and hidden? I can tell you are trying to walk back your previous erroneous statements. The reason I am pursuing this is that yours are the kinds of fantasies that mislead and harm patients. It has recently been pointed out to me how harmful such remarks can be.

Tall_Allen profile image
Tall_Allen in reply to dhccpa

(1) The amateur researchers don't know how to do research on the pubmed database, or they have confirmation bias that blinds them to negative findings. I've even seen "amateurs" in this forum list only the studies that affirm what they believe.

(2) There is a bias among journals to only publish positive results. Often there is a longer publication lag time between the end of the negative study and a positive study. At the major annual meetings, studies with positive results are often presented to the whole body of members, while studies with negative findings are relegated to poster sessions.

(3) For the last several years, anyone listing a new clinical trial on clinicaltrials.gov is required to publish the results. If a journal won't publish it, they must list the results on the website.

dhccpa profile image
dhccpa in reply to Tall_Allen

Fair enough. Thanks for the detailed answers. All good points.

in reply to Tall_Allen

Not reporting trial results continues to be a huge problem. As much as you would like it to be true TA, it isn't happening:science.org/content/article...

Tall_Allen profile image
Tall_Allen in reply to

I remember when that was published. I had exactly the opposite reaction as you did last year. The other way of looking at it is:

(1) it is happening, except in a minority of cases. Almost no one failed to report -- teaching hospitals were often late, but they did report. The pharmaceutical industry has a nearly perfect record.

(2) There are rules in place and penalties possible for breaking those rules. Should late-reporters get fined that much?

(3) enforcement could be better - hopefully, with new leadership, it will be

(4) Journals, like Science, TrialsTracker, and The Lancet are getting involved in policing that the law is enforced, putting pressure on scofflaws.

KingNeptune profile image
KingNeptune

Money

larry_dammit profile image
larry_dammit

It’s all about the money. But as I understand it cancer is one tricky SOB. What works for one won’t work for another. Just saying 🙏🙏

Currumpaw profile image
Currumpaw in reply to larry_dammit

Yes larry_dammit,

To put one herb or whatever against a foe like cancer is like sending in ground troops with light weapons without artillery or air support.

Cancer might be getting hit hard with something like chemo but it's flank is holding--until a maligned, dried whatever finds a weakness allowing the chemo or the patient's body to rally. For instance --the Japanese have been using polysaccharide K for decades in conjunction with chemo. Polysaccharide K--Turkey Tail mushroom! An immune system booster.

Currumpaw

LearnAll profile image
LearnAll

One word answer is "lack of funding" Did you notice that most of research about natural treatments is coming out of countries where health care is universal and Govts pay for it..or from developing countries . Because it costs much less in those countries. Lot of research about herbs and anti cancer foods come from China, South Korea, India, Iran and other many Asian nations because they have ancient traditional systems such as Ayurveda, Traditional Chinese Medicine (TCM) and so forth. In these countries, Govts are also supportive about this and big pharma do not have too much influence on Govt agencies.

NickJoy profile image
NickJoy in reply to LearnAll

Something I don't understand is why the medical insurance companies don't fund trials? Surely it is in their interests to find the most effective and cheapest product - but maybe they are involved and I am just unaware of the connection.

LearnAll profile image
LearnAll in reply to NickJoy

Yes...There can be a short term profit gain for Insurance companies but in the long term the profit loss can be huge. WHY ? Because by showing lot of expenses in providing healthcare/treatments, they get excuse to keep raising Insurance premium and keep growing their empire and clout. Unfortunately, when profit becomes sole motive above humanitarian concern about wellbeing of citizens. .all these problems are going to remain.

A highly evolved society (in future) will put citizens health and wellbeing at the top and then, these perverted incentives to sell expensive treatments and hide and badmouth cheaper ,alternative and complimentary treatments might end.

Remember we are not patients any more.. we have been converted into consumers...Doctors are not doctors any more.. they have been mutated into providers and even worse vendors. As if Doctors are grocers selling tomatoes. Unfortunate !

NickJoy profile image
NickJoy in reply to LearnAll

Very unfortunate!

Currumpaw profile image
Currumpaw

Hey kayster7,

I worked in specialty chemicals for 14 years and then pharmaceuticals for 14 years.

While in conference about resolving equipment issues for manufacturing a certain drug I offhandedly mentioned that perhaps the company should till the lawn over and just grow something! I made the comment to lighten the moment and got a good round of guffaws.

If a drug can't be encapsulated, pressed into a pill or whatever form to be prescribed by doctors at so many $$ per dose--it will never garner the research $$ that billion dollar companies such as the company I worked for are willing to spend on studies. There will be no funded studies for a plant, an herb, a weed or an algae when people at a certain level get to choose what vehicle they will drive for the next three years. How to invest or spend their yearly bonus---yearly bonus? One year after the company had sent out bonuses they had another financial windfall--contract-- we received a second bonus!

When I see insistence by some here that "There has to be in vivo studies. I want numbers of men that this or that stabilized or whatever their cancer." That is all fine but having been in that business, a pharma manufacturer might as well close their doors if a study of a lifestyle, herb, or whatever is proven to stabilize or cure cancers. Say goodbye to the six figure incomes, the 401k, the health benefits, bonuses and cars. I didn't mention the seven figure incomes for those making the decisions at the very top.

How many have had a treatment fail and need a different treatment? Combined treatments?

Not everything works for everyone but an herb or whatever is expected to have a 100% efficacy --all by it's self--or it is immediately discounted--while chemo, surgery, radiation and hormone manipulation get a pass. There is a synergy between conventional, holistic and lifestyle changes that shouldn't be discounted. Don't expect that a pharma manufacturer such as I worked for to finance studies for herbs and such. The synergy between herbs and plants and so on ---how many studies of natural substances in combination, working together have been done?

Those that got lucky with whatever their initial treatment was and are doing well aren't on this site. Bless them and may they stay healthy!

I read a bit about the Davinci in years past. When purchased, a yearly maintenance contract was also required and purchased or there would be no sale. At the end of ten years the unit would be taken out of service--it's useful life over--part of the contract. That machine needs to be running to make money. It has been good for many but a hospital that buys one needs to keep it on!

Currumpaw

LearnAll profile image
LearnAll in reply to Currumpaw

Golden words: There is synergy between conventional, holistic and lifestyle changes that should not be discounted."

davenj profile image
davenj in reply to Currumpaw

Good thoughts.

Since you worked in Pharma let me ask you (and anyone else) for your opinion on the current RCT/FDA process as it relates to prostate cancer.

What if the government and industry were to suddenly agree that finding a "cure" for prostate cancer was an urgent top priority. How would the system be changed?

Currumpaw profile image
Currumpaw in reply to davenj

Hey davenj,

It is hard to predict except for the fact that if a cure was found there would be $$ swirling around all those involved in some way.

I think that any cure would be for "cancers", not a specific type. I have read that the experience gained through mRNA research may hold promise. Would there be a downside to a cure much like the effects radiation treatments possibly have for men treated with radiation?

Sometimes "fast" isn't good. Money makes the world go around.

In 1991 I had an opportunity in my area to work at the Burroughs Welcome facility in Rhode Island. Bio-tech and cutting edge back then. The product--cultured cells from a woman whose body had beaten cancer. The plant has changed ownership several times since then and is now owned by Amgen. The plant had been owned by Wyatt Biopharmaceutical prior to Amgen acquiring it. Let's talk about money. The company I was working for was building a new manufacturing building attached to the present one. It became a 117 million dollar expansion. The site had contractors from all trades working 24 hours a day through the week and the day shift on Saturdays. I was involved in daily meetings with our engineering and the contactor's supervisors. I also inspected work sites to issue hot work and line entry permits along with an occasional confined space entry permit. Wyatt owned the Amgen plant then and were expanding it. There was a shortage of tradesmen. Wyatt paid tradesmen $10 an hour over their union wage if they worked their week without a day off. Wyatt was going to suck up the local trades people one way or another. That was in 2002. Interesting about money, pharma and bio-tech companies isn't it? An extra $400 a week in 2002? The tradespeople shortage was somewhat alleviated by the pipe fitters union allowing retirees to return to work without affecting their monthly union pensions. The unions were concerned that the door was being opened for non union trades people.

Now there are some at the NIH and other guv acronym entities that control who or what gets grant money. Believe that the companies that manufacture equipment, drugs or whatever to treat cancers as well as those that treat cancer hold some sway over new research through relationships nurtured with long term, high level, employees at these guv acronym agencies. What would the impact be on the Davinci and the hospitals that have purchased these machines if next year a shot, a pill or whatever cured cancer? The other cures and the chain in manufacturing to health care that gets these treatments to patients? It would turn the healthcare industry upside down. I am not saying that any cure is being withheld. I am saying to consider the impact a "cure" for cancers would have on health care.

Currumpaw

Blueslover profile image
Blueslover

They follow the money

Gemlin_ profile image
Gemlin_

The global dietary supplements market size was valued at USD 140.3 billion in 2020 and is expected to expand at a compound annual growth rate (CAGR) of 8.6% from 2021 to 2028. That's a lot of money!

The only research they need to do is to prove that their products are as safe as food.

We can not expect research on effect since they make such huge amounts of money without evidence on effect. On the contrary, it would be bad for their business if research were done!

j-o-h-n profile image
j-o-h-n

Greetings kayster7,Now we need a little research about you...

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/20/2021 6:38 PM EST

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