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Posted 6/21/2017 2:30 PM (GMT 0)
It still seems very closed to the natural side, the natural side has its place in healing too. People who come here are over 18 and seeking help, they can make their health decisions for themselves. What’s wrong with giving them the facts and letting them decide for themselves? In the locked thread from a few days ago there must have been 10 false statements. It was locked because I didn’t agree with the false statements. Perhaps I went about it wrong, but false statement don’t help cancer patients!!! Yes, "vitamin E is bad for the prostate" is in fact a false statement, if not qualified. Which is why I started the SELECT study thread.

So I propose this.
What is wrong with saying there is some very strong research like one of the many we listed in the SELECT study thread -
Where a research PhD with impeccable credentials said things like - “We showed that in human prostate cancer cells, gamma E treatment led to apoptosis, necrosis and autophagy”
OR, you can be safe and wait x years for a pharmaceutical company to sponsor an RCT.
I really don’t want to believe it, but part of me does think the SELECT study was intended to fail from the beginning.
Or
There is a ridiculous amount of rock solid research that Vitamin D is good for a myriad of things including the prostate.
Or, you can be safe and wait x years for a pharmaceutical company to sponsor an RCT.

This IS a great forum, I believe we can make it better. Am I wrong?
Posted 6/21/2017 3:18 PM (GMT 0)
I think that taking advice from a research PhD with amazing credentials is really not the point. This person's statements still mean little without the verifiable science behind them.

Ultimately the question boils down to this, you, me anyone has the right to believe anything on faith - I can believe that lemongrasss is good for me, and you may not. I can believe that my mothers advice, a fitness gurus advice, what I see on TV, what a journalist said is right or wrong. I can take a medicine that has proven to be good for another ailment and believe it's good for mine. These are all beliefs, not ideas and remedies proven by rigorous scientific method. Therefore any statement about the belief, especially if it is presented as a fact in a large forum with diverse views would be a fruitless experience with one group of people agreeing with he belief, potentially providing anecdotal evidence backing that up, and other people saying the opposite. It's not a discussion that ends up anywhere useful... those are my thoughts on this.

Post Edited (An38) : 6/21/2017 9:57:55 AM (GMT-6)

Posted 6/21/2017 3:21 PM (GMT 0)
Keep it light, Tommy, anticipate the occasional patronizing response and brush it off, sustain humility in all opinions & advice. We can have those conversations.

This forum has an informally enforced value set - seems like each internet forum does. If you respect the protocol, you can offer alternatives to strictly evidence based medicine (for example).

I, for one, am all over diet, exercise, meaningful days (though I do little with supplements). Vitamin D? Hell yes (for me). PCP insists.

I am a "disciple" of cashlessclay - check out his posts! www.healingwell.com/community/profile.aspx?f=35&m=3515667&p=220024

Best to you,
Wilderness
Posted 6/21/2017 3:48 PM (GMT 0)
An38,
As a prostate cancer patient when a research PhD on the scientific research honor society for the last 20 years says -> “We showed that in human prostate cancer cells, gamma E treatment led to apoptosis, necrosis and autophagy”
You see no point, and have zero interest?

I understand the rest of what you said.
Posted 6/21/2017 3:58 PM (GMT 0)
island time
I apologize if I quoted you out of context, I probably did. I make mistakes. The "its all snake oil" and "all you get is expensive urine", made my blood boil as its a terrible thing to say to cancer patients.
But you are DEAD wrong about me willing to do anything to win a useless argument.
I HATE to argue!!!! I don't like having to do this. I don't care one bit if I'm proven right or wrong. I care about what is said to sick people seeking help.

I'm happy to leave here if that makes people happy.

EDIT - island time, you must have deleted your post. I didn't misquote you, you must be thinking of someone else. We haven't been in the same threads, at least going back to the beginning of May.

Post Edited (tommyc) : 6/21/2017 2:31:23 PM (GMT-6)

Posted 6/21/2017 4:00 PM (GMT 0)
Tommy, the "forum" is not one voice; it is many prostate cancer patients and their loved ones who may have different opinions about things including supplements. And, that is ok...as long as the conversation is within the rules. We have had many, many, many, many (a lot) threads about supplements and "the natural side". So have many of the other HW forums. So to imply that we are "closed" to such discussion is not borne out by the facts.

Speaking of facts, I did not lock your other thread - it was done by one of the other moderators. He explained that there were numerous comments bordering on Rule #3 violations and that was the reason the thread was locked not because you didn't agree with the "false" statements. In spite of the lock, you started another thread on the same subject that was almost locked because of YOUR Rule #3 violation. When you removed it the thread continued.

Posts and threads on healing, education and support are welcome here. But I would suggest you understand that on these subjects there is a legitimate difference of opinion. Your perceived level of "proof" is not good enough for some other members who strongly believe that your statements are false. That's ok as long as all of the conversation stays within the rules.

One other suggestion: One of our very smart members suggested that we caress ideas rather than strangle them. I hope you will feel free to make your points with that in mind.

Jim
Posted 6/21/2017 4:08 PM (GMT 0)

tommyc said...
island time
I apologize if I quoted you out of context, I probably did. I make mistakes. The "its all snake oil" and "all you get is expensive urine", made my blood boil as its a terrible thing to say to cancer patients.
But you are DEAD wrong about me willing to do anything to win a useless argument.
I HATE to argue!!!! I don't like having to do this. I don't care one bit if I'm proven right or wrong. I care about what is said to sick people seeking help.

I'm happy to leave here if that makes people happy.

don't leave here believing it would make anyone happy. it would not me...and if i know the group's value system (which i *think* i do) it would make no one happy if you left. I want you to stay. It was wrong of me to make this personal in my above post, which i did. It was wrong of me to do that...contributing nothing positive

don't go
Posted 6/21/2017 4:09 PM (GMT 0)
I am not familiar with this research. However one thing I can say is that it takes a very long time and a very large amount of effort between something working in a lab in a Petri dish and it becoming a recommended treatment option after clinical trial. There are many steps in between and hundreds of potential remedies fall into the scrap heap for one reason or another.

As a patient, as a caregiver it might feel crazy to wait till a potential cure is verified in this way. But it has been an approach that has been proven over time. It is an approach that allows other scientists to question, verify, disprove, review, all these things make the final outcome most robust and more widely accepted.

To this I would like to add that this forum is not a repository of fact, it is a support forum. You are obviously passionate about supporting people with prostate cancer and that's exactly what we need in this forum. So it would be sad if you left due to people having different points of view to you.

Post Edited (An38) : 6/21/2017 10:21:51 AM (GMT-6)

Posted 6/21/2017 4:15 PM (GMT 0)

An38 said...
I think that the fact that a research PhD with amazing credentials saying something is really not the point. The most amazing scientist without the most verifiable science behind him or her is no different to anyone else.

Ultimately the question boils down to this, you, me anyone has the right to believe anything on faith - I can believe that lemongrasss is good for me, and you may not. I can believe that my mothers advice, a fitness gurus advice, what I see on TV, what a journalist said is right or wrong. I can take a medicine that has proven to be good for another ailment and believe it's good for mine. These are all beliefs, not ideas and remedies proven by rigorous scientific method. Therefore any discussion of them in a large forum with diverse views would be a fruitless experience with one group of people agreeing that whatever belief I have makes sense, potentially providing anecdotal evidence backing that up, and other people saying the opposite. It's not a discussion that ends up anywhere useful... those are my thoughts on this.

Hi An38,
I could be wrong of course, but I really don't think anything TommyC proposed in the OP, or anything I can think of from his previous posts/threads, is based on faith. I think t is based on science. I don't agree with "The most amazing scientist without the most verifiable science behind him or her is no different to anyone else." IF by that you mean "without a large scale RCT(and preferably a Pharmaceutical company doing the study).

There is much science that is not a large and expensive (millions$)RCT, and just because it does not rise to the standard of RCT does does not mean it is not science and in fact is faith. For example, if one group gets vitamin X and has results much better than another group which got nothing(not even placebo), or even if just compared to historical results and expectations for a group, that is not faith, that is fact, and that is science. Even if it has not yet risen to the gold standard large scale RCT does not mean it is worthless ad not at a minimum good food for thought. ESPECIALLY if it keeps happening in multiple studies by a lot of different institutions. And it is the same with in vitro and in vivo animal studies, they are science and not faith. They don't prove that vitamin X is going to cure my PC, but they might well be worthy of discussion and as it always says "further research is needed, RCTs are needed".

And then the decades go by and the unbiased RCTs just never seem to appear.

And on the idea some seem to have that nothing is worth even discussing unless it is large RCT because to do otherwise is dangerous, I would like to point prescription drugs that go through the RCTs before being turned loose on the public. After the (often manufacturer supplied) requisite, large RCTs are done, the drugs are declared "safe and effective" by the FDA and released to the public often for megabucks. But how often do you hear, a year or two or 10 down the road, that further research has shown the drug is NOT safe, and maybe not very effective either. Suddenly there is a "black box warning" or the drug is even pulled from the market, AFTER people have been hurt or killed. I had that personally happen to me as an anesthesia provider. Luckily no one was killed or even injured, it was just several very close calls with the newest FDA approved "safe and effective" drug. Then suddenly, BAM, pulled from the market a few weeks later. Though it didn't happen to my patients, there were some killed. I used to think the older anesthesiologists were just cheap skates when they did not want to use the newest, most expensive drugs. But in reality, they had just learned the hard way over the years to require more evidence than "FDA approved".

Point being? Even FDA approved drugs with RCTs behind them are not a guarantee of safe AND effective compared to a drug being replaced. Still, it is the best we have, but a question arises: how can this happen? How can there be large scale RCTs proving a drug both safe and effective and then people are killed by that drug? Why didn't those dangers show up in the RCTs?

Any study we read, RCT or otherwise, has potential bias and might not be true science. IMO.
Posted 6/21/2017 4:20 PM (GMT 0)
tommyc, the value of a scientific argument is not determined by who is making it, but by the level of rigor taken in developing the argument. I recall back many years ago when Vitamin C was being pushed by Linus Pauling. Many, many people bought the argument because the stories all began with, "Nobel Laureate Linus Pauling says...."

When the actual research was done, it found partial support for what Pauling said...but wiped out a lot of it as well. People, however, didn't buy less Vit C.

What you are bringing forth is an interesting hypothesis--that there are multiple forms of Vit E, and that those different forms have different effects on the human body. The SELECT trial shows strongly that one particular form is bad if used in excess. The other forms? Not proven either way. That's what the facts show. There are some interesting anecdotal items out there, but no rigorous trials on the differences (yet).

As someone who was raised by a scientist, and who is trained as one myself, I get very, very tired of the rants against "science", because it tars the many honorable and dedicated researchers with the broad brush of hatred and ignorance undeservedly. I could go off in a rant about the insanity of how research is funded and the extreme lack of actual science education in this country--but I'll keep it to myself.

I recall two of the most basic statements about research that I've heard over the years:

1 (said with a wink and a nod): All data that does not fit the hypothesis is to be discarded
2. is a question and an answer: Q: What do you think we'll learn? A: I don't know, that's why they call it RESEARCH!

IMO, when the providers of research funding demand a certain outcome, then the ability of the researcher to return with an answer of "nope, we were wrong" is significantly compromised. The reality is, that the vast majority of the time, the most common answer in research is "no".
Posted 6/21/2017 4:25 PM (GMT 0)
Tudpock18
Perhaps I was overzealous in the locked thread, it made me angry. I asked other members to read it and they didn't see much wrong with it. You must admit my retracted statement was pretty tame. It was a question, I ran that past other members too. Regardless, as I said I'm all for treating others with respect, I applaud what you did even if I don't agree with it. I'm active on the Chicago Cubs message board, its out of control daily.

One thing -
"In spite of the lock, you started another thread on the same subject"
The locked thread was on Saw Palmetto, my thread was on the problems with the SELECT study, how are those two threads related?

What you said is all I ask - One of our very smart members suggested that we caress ideas rather than strangle them.

Post Edited (tommyc) : 6/21/2017 10:28:33 AM (GMT-6)

Posted 6/21/2017 4:47 PM (GMT 0)
Billybob,

I agree with you on the following points:
1. The scientific method is not perfect and sometimes treatments that should not pass all the gates do. However it is better than the alternative.
2. That it is a crying shame that there is little funding for trials where pharmaceutical companies do not make a profit. However making decisions on whether to take such treatments is based on more individual judgement and belief in that treatment.

I thought that Tommy was making the point in the original post and thereafter that someone was to be believed because of his/her qualification and the level of respect that the person has in the scientific community. I was challenging that point.
Posted 6/21/2017 5:01 PM (GMT 0)
"I thought that Tommy was making the point in the original post and thereafter that someone was to be believed because of his/her qualification and the level of respect that the person has in the scientific community"
--
Sorry, not exactly. BillyBob put it much more eloquently than me.
There is good research out there but the RCT's are probably not going to happen in any of our lifetimes. That's a sad fact.
Posted 6/21/2017 5:27 PM (GMT 0)
halbert,
"The SELECT trial shows strongly that one particular form is bad if used in excess. The other forms? Not proven either way. That's what the facts show. There are some interesting anecdotal items out there, but no rigorous trials on the differences (yet)."

There was an initial study 28 years ago, 10,456 men, anyone ever hear of it? The bad ones get the press, even if they are flawed. Its in the other thread - https://www.ncbi.nlm.nih.gov/pubmed/11121464

There was also a study that showed the same bad form of Vit E but when used in normal range and not 700 times more than the normal amount showed a reduction in PC, I think it was 35%. Its in the other thread also.

Post Edited (tommyc) : 6/21/2017 2:38:03 PM (GMT-6)

Posted 6/21/2017 5:30 PM (GMT 0)
deja vu all over again.....
Posted 6/21/2017 5:48 PM (GMT 0)
tommyc--I've been at this forum long time and can tell you that we can easily get our tails in a knot: all of us some of the time, and a few of us a lot of the time. I have at times shot off my mouth about something that was none of my business, replied cynically when a toned down reply would have sufficed, and pole-vaulted over pebbles. Make of this what you will
Posted 6/21/2017 6:25 PM (GMT 0)

logoslidat said...
deja vu all over again.....

Well who asked yousmilesmilesmile
Posted 6/21/2017 7:39 PM (GMT 0)
Among others in this thread, I particularly liked the above posts of Halbert and BillyBob

but want to make the point that when the FDA approves a drug, the approval almost always includes the requirement that side effects are listed. Even for drugs that do not have a black box label. For instance, for the drug that most of us love wink (Lupron) the product insert comes with a long list of side effects that were noted in the trial that was presented to the FDA.

Other drugs have been approved that have serious side effects but minimal benefits (life extension of a few months?). And due to political and patient pressures, some drugs (typically for really serious cases where no other therapies are available) are now being allowed without the customary studies to validate them.
Posted 6/21/2017 8:00 PM (GMT 0)

Wilderness said...
Keep it light, Tommy, anticipate the occasional patronizing response and brush it off, sustain humility in all opinions & advice. We can have those conversations.

This forum has an informally enforced value set - seems like each internet forum does. If you respect the protocol, you can offer alternatives to strictly evidence based medicine (for example).

I, for one, am all over diet, exercise, meaningful days (though I do little with supplements). Vitamin D? Hell yes (for me). PCP insists.

I am a "disciple" of cashlessclay - check out his posts! www.healingwell.com/community/profile.aspx?f=35&m=3515667&p=220024

Best to you,
Wilderness

WOW,
Thanks Wilderness, I read the posts by cashless, they are very interesting. In one thread he talked about green tea, pomegranates, black tree fungus, mushrooms, flaxseed, vit D, and Soy and no one said a THING.
Brokenone started a thread on Saw Palmetto and the bat signal went off almost immediately
Who does cashless know?
Posted 6/21/2017 8:04 PM (GMT 0)
Tommyc said.... " I'm active on the Chicago Cubs message board"

Well, IMO, this explains everything. 😂😂😂

Don't take it the wrong way Tommy, it was a joke. I just figured this thread could use a little levity.

Carry on, interesting discussion
Posted 6/21/2017 8:25 PM (GMT 0)

Pratoman said...
Tommyc said.... " I'm active on the Chicago Cubs message board"

Well, IMO, this explains everything. 😂😂😂

Don't take it the wrong way Tommy, it was a joke. I just figured this thread could use a little levity.

Carry on, interesting discussion

Not at all, its pretty funny. I maybe, possibly, could have picked up some bad message board habits from the Cubs board. Things get pretty nasty there, especially after a loss.

Post Edited (tommyc) : 6/21/2017 3:42:02 PM (GMT-6)

Posted 6/21/2017 10:32 PM (GMT 0)

An38 said...
Billybob,

I agree with you on the following points:
1. The scientific method is not perfect and sometimes treatments that should not pass all the gates do. However it is better than the alternative.
2. That it is a crying shame that there is little funding for trials where pharmaceutical companies do not make a profit. However making decisions on whether to take such treatments is based on more individual judgement and belief in that treatment.

I thought that Tommy was making the point in the original post and thereafter that someone was to be believed because of his/her qualification and the level of respect that the person has in the scientific community. I was challenging that point.

Thx An38. Let me say that IF that was the point being made, I also would, along with you, challenge that point. For me a Ph.D or MD doing a study are quite likely to be open to and influenced by bias and pressure from those paying for the studies, just as much as any other human. I would never automatically believe that a study was free of outside influence just because some Ph.D's name was behind it. In fact I have no doubt that some of these studies suffer from bias of some type influencing the results in some way.

But equally, I start out giving the benefit of the doubt- until I see evidence otherwise- that a study being done by a bunch of Ph.Ds and MDs at a reputable institution, perhaps a university or medical center or both together, is good science. And without question, many of the studies on vitamins or foods that have been linked to here over the years absolutely meet those standards.

And I must admit to a couple of biases of my own in these matters. I will admit that either Big Broccoli or Big Vitamin X might have an incentive to spend big $ to influence studies to show a benefit for their products. But, considering that whatever good might be found will give financial rewards to their dozens of competitors who sell Broccoli or Vitamin X, at dirt cheap prices to start with, I feel that the incentive to tweak results to show an advantage to a new drug(or conversely to prove that we should not take Vitamin X or Broccoli) is several orders of magnitude greater with the drug manufacturers where literally billions in potential profits for one company. And for however many years that patent might be valid. So I admit to a bias that causes me to look with more of a jaundiced eye toward studies coming from those under the influence of these companies, than I do towards a study in favor of broccoli. However, regardless of my bias, I feel that all studies must be considered for possible bias, no matter who or which side it is coming from, and no matter how many Ph.D.s or which institutions are involved.

But my biggest bias is that I WANT some of these relatively natural approaches to be helpful. I am not neutral on that. I desire that someone will find good scientific proof that some food or supplement is a significant help in the war on PC and other diseases. But hey, the science will show what the science will show, regardless of my desires. So be it. Just give me the unbiased data.
Posted 6/21/2017 10:37 PM (GMT 0)

tommyc said...

Wilderness said...
Keep it light, Tommy, anticipate the occasional patronizing response and brush it off, sustain humility in all opinions & advice. We can have those conversations.

This forum has an informally enforced value set - seems like each internet forum does. If you respect the protocol, you can offer alternatives to strictly evidence based medicine (for example).

I, for one, am all over diet, exercise, meaningful days (though I do little with supplements). Vitamin D? Hell yes (for me). PCP insists.

I am a "disciple" of cashlessclay - check out his posts! www.healingwell.com/community/profile.aspx?f=35&m=3515667&p=220024

Best to you,
Wilderness

WOW,
Thanks Wilderness, I read the posts by cashless, they are very interesting. In one thread he talked about green tea, pomegranates, black tree fungus, mushrooms, flaxseed, vit D, and Soy and no one said a THING.
Brokenone started a thread on Saw Palmetto and the bat signal went off almost immediately
Who does cashless know?

Why do you think he is Cashless? He knows who to pay off.

yeah
Posted 6/22/2017 6:31 AM (GMT 0)
Rule 3 was widely abused in the locked thread, and I did not name names. Not by just one poster, but interestingly enough you were the only one who assumed the mantle of blame.

And it is very bad form to keep opening threads to restart discussions that have been locked.

Supplements have their places in medicine, but they seem to be especially abused by people trying to separate PCa patients from their money.
Posted 6/22/2017 12:45 PM (GMT 0)
. . . And to re-use my snarky comment "If milk is so good for everyone, why don't adult cows drink it?" - I will ask "If supplement (Insert Name) is so great, why don't more than 2 or 3 doctors recommend it? Why don't any of the major cancer centers recommend it?"

Forget about economic conspiracy theories, I just don't see the activity. I personally use several supplements, but I don't expect any of them to cure or impact my cancer. I take them because they make me feel better. It is just personal, not scientific (to me).
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