Curcumin and other supplements - Advanced Prostate...

Advanced Prostate Cancer

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Curcumin and other supplements

efsculpt profile image
133 Replies

I am someone that is big on supplements to help repress prostate cancer. But I think one must consider articles like the link on this post when taking supplements.

I take 5mg of rosvastatin and have for years. During that time my PSA has gone up and down, and up, and down. So, I keep taking it because it has been a constant over the years and it doesn't seem to influence my PSA reading.

PSA is an important indicator of what the cancer is doing, but it may not be totally reliable as the cancer mutates into nonPSA producing cells.

prostatecancer.news/2019/04...

Craig

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133 Replies

I too have used curcumin and many other nutrients for Over five years Now. Over four and half with no signs of pc and an undetectable PSA also. I see no reason to ever stop . Good luck to you 🌵

Tall_Allen profile image
Tall_Allen in reply to

Is it masking your PSA?

in reply to Tall_Allen

PSA<.0164 for 4 & 1/2 years so far .. no visible signs of pc present either? If curcumin is masking my PSA so be it . Is it also keeping the Pc away then? Something is? No plans to stop it now . If pc stomps back on me some day I might toss the nutrients as being just BS but until that unwanted day I’m riding It til I can’t ride no more . My Mo and my nat dr both say” whatever you’re doing ? keep doing it !” Peace T_A Thanks

Tall_Allen profile image
Tall_Allen in reply to

So it sounds like you are tracking progression with imaging, and not relying on PSA. :-)

johnscats profile image
johnscats in reply to

How much curcumin a day are you taking

in reply to johnscats

Thank you for asking .? I Take 4 pills per day containing 1 gram

curcumin Phytosome . Brand name Thorne Meriva -500-SF . This is per my natural dr... There might be cheaper available but I’m sure of my drs choosing only quality products for cancer patients . Also my wife zest fresh organic tumeric into my water and foods daily... We eat slot of tumeric and raw ginger. ✌️

johnscats profile image
johnscats in reply to

Thanks happy healing

lewicki profile image
lewicki in reply to

Hi Whimpy-P, Your results are great. I am sure you have written your program before. Where might I find it.

Thanks

in reply to lewicki

Sorry guy, I had deleted my bio after some naysayers responses to me . I put my nutrients on my bio now . Thank you 🙏

lewicki profile image
lewicki in reply to

Thank you

in reply to lewicki

Take care Lew!

in reply to Tall_Allen

Yes Sir, all testing provided by the tak-700 trial. Thank you

Bobrat profile image
Bobrat in reply to Tall_Allen

Would taking chemical conbination's from your Doctor that decrease your PSA be masking your Cancer!

Tall_Allen profile image
Tall_Allen in reply to Bobrat

Prescription drugs for PCa don't mask your cancer, they kill it.

Bobrat profile image
Bobrat in reply to Tall_Allen

Most Prostrate Cancers after treatment return given time so I think it is fair to say supplements work in the same way except being much healthier without the side effects of radiation and hormone blockers which I took!

Tall_Allen profile image
Tall_Allen in reply to Bobrat

Most prostate cancer is cured by radical therapy.

noahware profile image
noahware in reply to Tall_Allen

But there is no way to separate out the men who did not actually need cure, whose disease would have remained non-threatening. Just as you say "You have no idea what would have happened if you hadn't taken the drugs (supplements are drugs) you are taking," it is also true that we no idea what would have happened with some of these men if they hadn't received RP or RT. What we do know is that MANY men are NOT cured, and that MOST (over 50%) probably have cancer cells already in bone marrow by the time of RP or RT.

So if "cure" means the actual removal of ALL cancer cells, then such men are not actually cured. If cure simply means the men end never up being threatened by advanced PC, then we have no way of knowing the exact percentage of men who would have been "cured" by either placebo or non-intervention, since many men with PC who do NOT undergo RP or RT also never up being threatened by advanced PC.

The best way to improve "cure rates" (as was done to some degree in the 1990s) is to treat men with pre-cancer or cancer that poses no likely threat to life or health.

Tall_Allen profile image
Tall_Allen in reply to noahware

Yes there is a way to "separate out the men who did not actually need cure." That's exactly what the trials of active surveillance have proven. Men with certain low risk characteristics survived just as long whether they were treated or not if a certain protocol was followed.

noahware profile image
noahware in reply to Tall_Allen

Yes, so do we say these men with certain low risk characteristics who survive just as long were "cured" by that non-treatment? Of course not. But if you had taken one of those untreated men who WOULD have survived whether treated or not, and you instead treated him, you could then claim you "cured" him.

What I am saying is, there is no way of telling for all such men which of those treated were truly "cured" by the treatment and which ones got treatment they didn't actually need, because they WOULD have been "cured" by non-treatment if it had been pursued.

We can't prove a counterfactual. A treated man MIGHT have been cured, but he might have also had a cancer that was not destined to progress beyond merely being clinically significant. To change the status of a cancer from "clinically significant" to "(temporarily) not clinically significant" is not my definition of "cure."

What was increasingly seen in the 1970s by some was that "cures" might wear off after 20 or 30 years. So some of these men were cured just up until they no longer were, basically because "the cure" of RP or RT did not and could not address the fact that they had disseminated cancer cells in their bone marrow by the time RP or RT was suggested to them.

Tall_Allen profile image
Tall_Allen in reply to noahware

You can prove what would have happened using a randomized clinical trial. That's why God invented them :-)

See:

prostatecancer.news/2020/02...

RT cure rates were low until about 2000 when the new linac technology enabled dose escalation. Better scan technology has improved patient selection.

noahware profile image
noahware in reply to Tall_Allen

I think I would prefer to see RP or RT compared to placebo. It would be important for men NOT getting a treatment deemed "curative" to think there was a possibility that they were in a group that WAS receiving a potentially curative treatment.

Leaving a cancer in someone and telling them NO action is being taken has got to have a negative impact on some men. Likewise, telling men you ARE killing or removing a cancer even when you are not, will surely impact some men in a beneficial way.

Bob Liebowitz said a study comparing placebo to placebo + RP showed a better overall survival for the placebo-only group, but I have never seen that study. Do you know if such a study actually exists, and if he conveyed its results correctly?

Tall_Allen profile image
Tall_Allen in reply to noahware

I guess you ignored the link I just provided. I won't bother in the future.

noahware profile image
noahware in reply to Tall_Allen

I see no mention in the link of any study comparing placebo to placebo + RP. I don't even see the word "placebo."

Currumpaw profile image
Currumpaw in reply to Bobrat

Hey Bobrat!

A little ADT here or there? Maybe those shouldn't be taken to find out exactly how virulent a cancer can become?

Currumpaw

Currumpaw profile image
Currumpaw in reply to Tall_Allen

Hey T_A!

Is the curcumin and such working in synergy strengthening his immune system preventing or stabilizing cancer? One way to find out! Quit taking the supps!

My oncologist, wit decades of experience caring for thousands of men with prostate cancer has been involved in studies, (he is no slouch!), has told me not to stop doing what I do. I believe he expected that by now, I would be having some treatment that we here on HU all wish to avoid! The smile is back on his face when we meet which is now at six month intervals rather than at three months. I believe the three month meetings were because he was hoping to "catch it early". He thinks I may go a long time now.

By the way--all the supps that are supposed to mask PSA--I took them and more and my PSA has risen as much as 50% over 3 months. Wasn't much masking going on there! Had I stopped the supps would I be in what can only be said to be, a situation as hopeful as I now find myself in? Or maybe I'd be trying to be optimistic about one of the treatments no one wants.

I do not fit into, in any way, what you say can happen with supplements and PSA. Am I an aberration?

One study refutes another!

Currumpaw

Tall_Allen profile image
Tall_Allen in reply to Currumpaw

You have no idea what would have happened if you hadn't taken the drugs (supplements are drugs) you are taking. Fortunately, science is not based on what you imagine your experience would have been without the supplemnts. There is no evidence that curcumin does what you believe it does in actual humans. But belief is a powerful thing - especially on the immune system, so I hope you will continue to hold onto your beliefs.

Currumpaw profile image
Currumpaw in reply to Tall_Allen

Hey T_A!

My oncologist who as I said, has decades of experience, has been actively involved in prostate cancer research and guided thousands of men diagnosed with prostate cancer over the years of his career expected something different. He has told me --NOT TO STOP--anything that I am doing. That concerned look on his face has been replaced with a smile on his face rather than that concerned look. I think after having thousands of men as prostate cancer patients my onco had an idea of what he expected would happen to me. I NOW have to believe that there is something to not just biotics but that the synergy of biotics can be powerful. As for belief being a powerful thing--I didn't have much belief. I figured I'd give a try. I am not close to anyone now. That happens in life. I won't get close to anyone because I feel that I walk on the top of a narrow wall and could fall off when I lose my balance--or to be be more blunt--when whatever is in me finds a way to circumvent that which I do. Extending my time here is becoming less important. Leave things tidy!

I lived with my grandparents when I was a child. I watched my grandfather die of cancer over two years, A vibrant man who at 5' 11" weighed about 66 pounds at his death. We were each other's favorites. I was too young to be allowed in the hospital to visit him. An exception was made. I stayed home from school the last week when we brought him home to help care for him. The smell of cancer permeated the first floor of the house. You don't forget the smell of cancer. He was exposed to asbestos--it took off from there. Before I die that way--even today--with hospice--I am not a weak man--I will exit this life with my dignity rather than a stranger fluffing my pillow! I'm a little surprised myself about my turn of events. When it happens I'll be pragmatic about my exit. Nobody gets out alive! My meditation--much of it is anger--and justified-- but that is another story and not for HU! As far as optimism and finding my inner self and those things. I know what I am.

That is why I have empathy for those who have had a significant loss. A profession I was in required courses such as psyche 101, The Psychology of Grief and Advanced Techniques in Counseling.

I don't want to be anyone's experiment. I don't imagine things. I am a realist with a dose of pessimism. I make my own decisions.

Have a good day.

Currumpaw

Tall_Allen profile image
Tall_Allen in reply to Currumpaw

There seems to be something to your "smell" observation. Dogs have been trained to sniff out prostate cancer.

When my father was dying of cancer, my mother was inundated with "helpful" advice from well-meaning family and friends. She felt guilty when she forgot to give him his Vitamin E, blaming herself if he got worse afterwards. She imagined that he would have gotten better if only she remembered to give it to him (along with his dozen or so prescribed pills, all on different schedules). As you see, the imagination can cut both ways. Imagination is a natural human survival mechanism - not an insult. It is appropriate in some situations, but not in others. Joan Didion wrote a wonderful book called "My Year of Magical Thinking."

You (and your doctor) imagine how you would have responded had you not taken those drugs. That's why real science uses randomized control groups - to see how patients actually respond. But group research can only predict for group responses, not for any given individual. If you believe you are different from the average guy in some research cohort, that is certainly your choice.

Currumpaw profile image
Currumpaw in reply to Tall_Allen

Het T_A!

My oncologist doesn't imagine things. I am a more of a pessimist. I didn't expect good results but figured I wouldn't go down without trying. My oncologist told me he has seen it all. Men try this, men try that, men don't get cured and their disease progresses. In the beginning he wasn't negative about what I do but he wasn't supportive. I think he was a bit surprised. Then there was the meeting where he told not to change things. I was considering dropping some things. He said no. Things are stabile.

Why do I have to start imagining things? I don't want to do that. This is were I'm at today--plain and simple--it is what it is.

Sorry about the "well meaning" friends that caused your mother more anguish. I can see why you are so down on supps. You just drew back the curtain. We all have those things in our past --those of us with empathy and a soul--things that didn't happen to us but are so spiritually painful to us that we may as well be the one who experienced the pain. These are events that shape us, make us who we are. We never get over a significant loss. We learn to live with it. It changes how we respond to life and it's challenges.

Years ago I knew about dogs being trained to sniff out prostate cancer. The year was 2010 for this article. copy everything between the lines. Last I knew a machine was being developed to do what the dogs do.

____________________________________________________________________________________________

Dogs Sniff Out Prostate Cancer - WebMD

webmd.com/prostate-cancer/n...

_____________________________________________________________________________________________

I do quite a bit of supps and have a somewhat flexible routine. I would never fit into a randomized group--ever! They wouldn't have me nor I them! They would tell me what I could or couldn't take right? Uh uh! I am no one's experiment!

Biology can adapt. How long? How long do the conventional treatments work? Forever right? Is it our optimism that makes the treatments work?

The capsaicin study that Dr. Klotz was involved in proved that capsaicin killed cancer stem cells didn't it? Stop taking capsaicin and let them mature? The graph Dr. Klotz used to show his "hot sauce patient's" PSA history is interesting He wasn't cured, but stabilized despite the failure of hormone therapy. I would have liked to know what the results were if the patient went back on "the sauce". did his PSA go down to where it had been or stabilize where it was at? That would be of interest wouldn't it? What is the goal of hormone therapy? Nothing wrong with some stability.

You have a good rest of this Sunday. Do something for fun. I am.

Currumpaw

Tall_Allen profile image
Tall_Allen in reply to Currumpaw

You certainly do imagine things. I do too. We all do. If your oncologist is human, he imagines things- it comes with the territory. It is part of our built-in survival mechanism; it's how we predict that if we don't run away, the lion will eat us.

One can't prove a counterfactual occurrence - one can only imagine it. Only a randomized controlled trial can provide a best guess at what would have happened, without having to imagine it.

Lab studies - whether by Klotz or anyone else - prove nothing about how things work in actual human beings. Only a clinical study can prove that.

I am not unsympathetic, and I have a drawerful of expired supplements to prove it.

in reply to Tall_Allen

You seem to be ignoring the financial realities of supplements. Who would pay for such clinical trials? Pharma companies are all about the profit motive. They just aren't going to invest money in such clinical trials or studies if there is no profit for them at the end of the road. There have been plenty of studies showing the efficacy of various supplements in dealing with cancer or other issues. Why is that not enough for you? You would have all supplements removed from the market until proven safe and effective? We already have one stupid war on (recreational) drugs, we don't need a war on supplements.

Tall_Allen profile image
Tall_Allen in reply to

Yet many supplements have gone through that kind of testing, here's just a few:

jamanetwork.com/journals/ja...

jamanetwork.com/journals/ja...

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

pubmed.ncbi.nlm.nih.gov/258...

academic.oup.com/jnci/artic...

(many more)

Supplements are a multi-billion dollar business. They heavily lobby politicians to prevent laws proving safety and efficacy;

academic.oup.com/jnci/artic...

"There have been plenty of studies showing the efficacy of various supplements in dealing with cancer or other issues. Why is that not enough for you? " Really? Show me one (other than sulforaphane).

in reply to

😷🥳🤙🏽

Currumpaw profile image
Currumpaw in reply to Tall_Allen

Hey T_A!

If your supps are expired dump them! Uh--please don't envision me imagining things other than winning a hefty Power Ball Jackpot! No little prizes-not worth risking $2 for! LOL! You weren't trying to analyze me were you? Please don't give me any other things I have to do! I've got enough as it is. I never saw imagination listed by Maslow in his "Hierarchy of Needs". Esteem yes. Now --I really don't care what people think of me. As I said before, because of my situation I would consider it selfish to become to close with anyone. If you want me to be wrong, then be happy thinking I am wrong. If you wish to see me as intellectually inferior, then I give you my permission to do so! LOL!

I'm a New Englander --Bill Parcells--"It is what it is".

Now go and have at least a little bit of a nice Sunday T_A! LOL!

You are taking up too much of my time. You win! What were we going back and forth on? I can't imagine myself getting my workout done--darn it!

Bye!

Currumpaw

Tall_Allen profile image
Tall_Allen in reply to Currumpaw

You don't seem to understand what imagination is. Imagination is an instinct. It's what gets you running when you're out on the savannah and you hear a lion growl. You imagine the lion attacking you, and you imagine that you would feel bad. All humans do it.

I'm glad you are enjoying the day.

Currumpaw profile image
Currumpaw in reply to Tall_Allen

I'm not enjoying my day. In fact if the zoo was still open I would go visit the lions! LOL!

Nighty Nite!

Currumpaw

TheTopBanana profile image
TheTopBanana in reply to Currumpaw

This has nothing to do with your conversation but I read this “That happens in life. I won't get close to anyone because I feel that I walk on the top of a narrow wall and could fall off when I lose my balance--or to be be more blunt--when whatever is in me finds a way to circumvent that which I do. Extending my time here is becoming less important. Leave things tidy!” or that it would be selfish to get close to others.

I wish you all the best in life and what makes you happy, but I just want to say that I do not think it is selfish at all the let yourself be close to others when you are sick. It’s just my opinion, ignore it if you want. My father has not told his friends about his disease and does not talk much about his feelings but I hope he will further on. The idea of being shut out is horrible. I’ve lost many many people in my life, once I becoming close with someone who died shortly after, becoming sick Very quickly, and even with the pain the memory of that person was worth everything and so much more. He was so much more then his illness, I’m grateful for the little time we had.

Hope you don't mind me writing, it just brought up memories. Wish you all the best!

in reply to TheTopBanana

👏🏼👏🏼✌️

noahware profile image
noahware in reply to Tall_Allen

The thing is, there is really no such thing as "group response." There are ONLY individual responses, which are then aggregated in the search for "statistical significance."

So if you believe you are different from the average guy in some research cohort, that is because you factually ARE different. The "average guy" in these studies is NOT a real guy, but rather is a hundred very different guys ground up in a blender and then divided by 100.

Can that be useful? Of course! Is it the "reality" of what MOST individuals will experience? I don't see how it could be. Most individuals have EITHER very aggressive forms of cancer OR (more commonly) less aggressive forms. There is NOT an abundance of "average" guys whose cancers are a combination of exactly 77.3% "non-aggressive" and 22.7% "aggressive."

Stats are very useful, but they are still an aggregate MODEL of reality. The study of economics is very helpful in revealing the limits of aggregate statistical analysis. Individual human action is exactly that, INDIVIDUAL, and it cannot be predicted reliably by aggregate analysis. It is true that knowing likelihoods can be helpful, but studies of only dozens or even hundreds of men are often limited in determining reliable probabilities due to the many variables that must exist among highly heterogeneous groups.

latvis profile image
latvis in reply to Tall_Allen

Dear Tall!

Since majority of PC patients are doing something by themselves, your science is not valid anymore.

"Oncologist is not expected to see this".

Tall_Allen profile image
Tall_Allen in reply to latvis

LOL@science not valid. You are right that voodoo replaces science for many patients.

The link you provided is one persons opinion who has no medical training. If someone looks long and hard enough, they can find pros and cons on most any issue. If an individual is slanted against supplements, they can find data to support findings. I take the link you provided with a grain of salt.

in reply to

Each to their own pathway of healing. You can’t blame a guy for trying to improve a rotten chemistry. ? Take care Fran .✌️

Tall_Allen profile image
Tall_Allen in reply to

It is not opinion. It is a review of the medical evidence so far in peer-reviewed journals. It is pointing out the risks of using PSA as a sole biomarker when taking drugs known to mask PSA.I have no "slant" - I would be thrilled to find a supplement that actually works - and I have a drawerful of discarded supplements to prove it. Do you have evidence to contribute to the conversation that shows any of them do not mask PSA?

monte1111 profile image
monte1111 in reply to

Salt is very bad for you. Peace my friend. I just couldn't resist.

Tall_Allen profile image
Tall_Allen

How would you know that it doesn't influence your PSA readings? See this FDA warning on biotin:

fda.gov/medical-devices/saf...

in reply to Tall_Allen

I don’t use biotin.. everything I use is per Dr Michael Uzick . I feel this nutritional direction Along with gods help from above has keep me in a much better status than I was five years ago . Thank you Sir for all of your direct answers .

Bobrat profile image
Bobrat in reply to Tall_Allen

I have a warning I'd like bring up ( beware of FDA warning)

in reply to Bobrat

WARNING Bobrat! The fda is a big part of the problem!

Amen, at one time this was a great group. Sadly many members have left due to a member who lives in his own universe and has the full support of the groups administrator. Because of this unfortunate situation, my donations have become less and less. I hope this group doesn't self destruct due to a few.

Schwah profile image
Schwah in reply to

I believe most of us novices enjoy hearing both sides of the story and then making our own decisions. Sadly, this country is becoming one where each side only wants to hear those that echo their own opinions. How can we truly learn unless we are willing to listen to others even if their opinions differ from our own? Or actually especially if they differ from our own. I urge both sides not to try to silence the other. If your beliefs have truth, those truths will shine through without having to silence others. Thanks to all for sharing.

Schwah

Haniff profile image
Haniff in reply to Schwah

Thanks for being so understanding 👌

in reply to Schwah

Agreed Schwah! If we all thought exactly the same , what a boring world it would be . It is good to look at different perspectives. This HU social

Media Is by definition supposed to be friendly and helpful to each other . We should all practice decorum towards all others . Especially those in fear searching for hope .No put downs are needed.. For Most us with stage #4 we Can understand the fear and knowing this we should show only show compassionate answers to others searching for hope.

LearnAll profile image
LearnAll

"It is his JOB...(LOL)"

Men fight to keep their jobs...I give up because its not my JOB.

After all someone has to defend their employers revenues and profits from toxic, exorbitantly priced medicine.

The reaction from establishment has made me even more convinced that certain diets, herbs, spices,supplements help slow progression.....otherwise why the establishment is feeling so threatened. PSA 0.2 after stopping ADT 7 months ago...Walking happily 5 miles a day. Only herbs, spices and anticancer food and supplement until PSA reaches 3.5 from current 0.2.

Haniff profile image
Haniff in reply to LearnAll

Hi LearnAll

Great that you’re doing so well Bro on your chosen path. Proud of you 👍

Others are struggling to find their light whilst others have travelled your path before and have learned.

We are all different, each of us in our own trials and tribulations. We need to find our path. So let us all encourage and motivate all our brothers, so that they can hold onto their faith and strength and beliefs to help them along their journey. We are here to support and help.

Love to All and please take good care, whichever path you take. We will always be here to help and learn together. Keep smiling and be forever Grateful for the Present ❤️

❤️

Haniff

in reply to LearnAll

👏🏼👏🏼✌️

LearnAll profile image
LearnAll

I don't care about those f*ing clinical trials...herbs, spices and supplements plus ionic Zinc and quercetin etc. are clearly helping me. I am not giving up on them.

I undersatnd the game well because I am an insider for last 30 years...(can't disclose more)

in reply to LearnAll

Awesome Learnall!

in reply to LearnAll

Each to their own😷✌️

He is respected in Tucson and by me. 🌵

Bobrat profile image
Bobrat

Amen Brother I agree with you!

Amen Nalakrats . . . There's nothing more dangerous than a resourceful idiot.

NevsMates profile image
NevsMates

Interesting conversation. I will stay on my mediterranean diet and scientifically proven medication. Been working since becoming advanced in 2009.

TheTopBanana profile image
TheTopBanana in reply to NevsMates

May I ask which gleason and if you had mets?

NevsMates profile image
NevsMates in reply to TheTopBanana

Gleason 8. No visible mets, however scans have come a long way since 2009 2010. I live down under.

GodsDog profile image
GodsDog

I was Gleason 9, PSA 68.63, locally advanced with one met to hip in February. On Lupron, zytiga, AND naturopathic regimen, and my docs at Mass General are fine with it, as are my naturopaths insistent on the ADT therapy. One of my naturopaths is a two time cancer winner as well, so know it from inside out. They frame the naturopathic care as supportive of the allopathic care, like a natural radiation or chemo, to help the ADT and my upcoming IGRT. Low sugar, no dairy no red meat diet and daily exercise. It’s a system, and I’m doing everything that doesn’t hurt, and that both my medical teams Support. I keep them in touch with each other on everything.

Especially with my diagnosis, I’m more focused on leading a cancer free lifestyle, than focusing on a cure, which may or may not happen since I have a known metastasis. But my docs are taking it decade at a time, now years or months, and I’m good with that. Side effects seem mild to moderate, the supplemental naturopathic approach may be helping there too.

pjoshea13 profile image
pjoshea13

It's funny that when a clinical trial meets an endpoint of a >=50% drop in PSA, the drug might go on to get FDA approval. But when a supplement causes a drop in PSA, that is meaningless, since the super-opinionated in the group have told us that all supplements are ineffective. Even the ones that they have never heard of.

I just searched PubMed for <curcumin analog> & got 2,473 hits. Curcumin has great interest to the people who bring us drugs, but it needs a bit of tweaking so that it has pharma-bioavailability & can be sold to us for $8,000 a month.

Amusing how the journey from natural supplement to drug legitimizes a despised supplement.

-Patrick

noahware profile image
noahware in reply to pjoshea13

I will add, we also see the opposite effect, where a certain supplement is deemed "harmful" but an approved medicine that can do MORE actual harm is NOT called a harmful substance, but is called a helpful substance with possible side effects.

It seems just as absurd to ignore the potential benefits of supposedly harmful supplements/foods as it is to ignore the potential harms of supposedly beneficial medical treatments/meds. Yet some do both as a matter of course!

A truly good cost/benefit analysis will rarely dictate that ALL patients should ALWAYS do one particular combo of help/harm, merely because it is within established consensus SOC, and that NO patients should EVER do another particular combo of help/harm (except in a clinical trial), merely because it is outside of the established consensus SOC.

in reply to pjoshea13

Totally agree brother.

ck722 profile image
ck722

Dealing with cancer is an elusive game of surgical removal, selective poisoning (radiation, chemo etc. and starvation- ADT. Nothing positively kills the cancer directly. Millions of variables are at hand. What works for me will rapidly kill somebody else.

Let us agree to disagree on this quest for cure. A lot of high powered brains reside here. We must be friends in this quest.

Gleason 9, 3b.

My preferred poison used in addition to standard treatments (RP, SRT and Lupron) is cannabis and tumeric.

Just got done with SRT last Thursday and am feel'n GREAT. Praise God.

Yeah, I'll say it again, Praise God.

shalom my fellow warriers

in reply to ck722

Praise God & Shalom!🙏

Currumpaw profile image
Currumpaw in reply to ck722

Hey ck722!

Keep feeling great!

Currumpaw

Tall_Allen profile image
Tall_Allen

"it is his job" I am not paid for taking your abuse, or your half dozen hangers-on (although I should be). Perhaps the reason "you cannot win" is because you are wrong? Is that possible? Science is based on "peer reviewed shit," as you call it. That "shit" prevents blowhards and internet trolls from harming people, or at least it should. I hope the FDA will one day close its supplement loophole so that sites like Life Extension, which probably harms millions of people, will shut down.

in reply to Tall_Allen

You sir, are the main reason I feel morally obligated to maintain a presence on this site. To intercept the recently diagnosed fellows who are scared and seek knowledge, some of whom still have a prostate. They deserve to know that there are other viable options that their doctor didn't mention and that you strongly discourage that might help them before they go into life changing conventional treatment. Some I've seen come on here with low grade and you're all over them to load up on Lupron and radiation and to get their prostate removed and then tell them not to waste their time on the "torture", as you refer to it, of a healthy diet and supplements. You are truly dangerous my friend. I'd like to start a post on here asking how many newly diagnosed men of the past who followed your narrow path of close-minded logic now regret it.

Tall_Allen profile image
Tall_Allen in reply to

Thank you, sir, for reaffirming that sites like this are dangerous because of people like you telling people that all they need is diet and supplements. Cancer is a dangerous disease - it kills people. It has taken my mother, and my father, and many people I've loved. Actually, I've never recommended Lupron or radiation or surgery to anyone with low risk prostate cancer. I have always been one of the biggest advocates of active surveillance.

It is the impugnity with which you flout your deep ignorance of scientific truth that assures my presence here. For that, many on here owe you a debt of gratitude.

in reply to Tall_Allen

I have never stated to anyone such a ridiculous statement as "all they need is diet and supplements". I simply advocate making ALL treatment options available for newly diagnosed people as well as all cancer pts. When I was diagnosed 8 years ago I was told that without immediate treatment of hormones, gland removal, and radiation, I likely wouldn't see Christmas that year, just 3 months away. I knew nothing at the time about prostate cancer much less alternative options.... they were never mentioned to me by my doctor at the time.

As I've mentioned here several times, through deep fervent prayer to God for his Divine guidance I was led to a plethora of alternative protocols over the next 8 years that were enhanced by diet, nutrition and supplements. Over the past 8 years I literally used my body as a human guinea pig trying different protocols as well as different supplements in tandem with nutrition which when I achieved the right combo, yielded mets on spine, neck, shoulder and ribs to disappear as well as 50 percent reduction of lesions (were 3, now just one) on prostate itself.

So nobody anywhere, doctor or layperson is ever going to tell me that alternative treatments are bunk because there's no "scientific proof" out there that supports their claims. There's never going to be any organized clinical trials that would "scientifically prove" their validity because no pharmaceutical company, or any other scientific medical research arm of the system would be willing to fund such studies knowing that these alternative protocols have no "patent-able" constituents which could represent future R.O.I. for them much less a fat profit.

As for doctors, they are limited to the tight restraints of the system and they only know what they've been taught. So when a doctor tells a newly diagnosed patient that their only options are surgery, radiation, hormones/chemo, they've simply offered the patient the full extent of their knowledge. So I don't ridicule or blame doctors for their stance on alternative medicine. They only know what they've been taught, which is "only medicine cures disease" .

I've listened to my own doctors tell me over the years that I'm crazy and one even laughed and ridiculed me telling me I must have a death wish even though they saw the scans and the numbers. It wasn't until February of this year did my new oncologist at Moffitt Cancer Center in Tampa, Dr. Julio Pow Sang say to me "what on earth are you doing?" when he saw scans showing complete disappearing of mets and 50 percent reduction of lesions on gland. I told him of the protocol I was on and he pulled up a stool and looked me square in the eye and said "Mr Frank, I am amazed. We don't know everything about this disease and on an overall basis, we actually know very little". He asked me for the details of the protocol and he wrote all down and said he would research it and advised me to continue. He was the first doctor in 8 years who offered me true support in contrast to what he had been taught.

And I've never adopted or touted an attitude that suggests conventional treatment is bad and no one should ever do it. When the day comes that I see what I am doing no longer works for me, then I may consider conventional treatment too. But until that day I'm never going to succumb to the close- minded beliefs that only man made chemicals and conventional treatments can kill or cure cancer. My personal experience demonstrates otherwise. And experience of other cancer pts who I've befriended on other forums, and even 2 from this forum who have experienced dramatic improvements in their conditions, with some going into full remission. So I'm not a freak case.

I conveyed to God 8 years ago that if he let me live and showed me the path to truth that would reverse this disease, that I would glorify His name for the rest of my life and I would share my story with anyone that was willing to listen.

In the meantime, I am enjoying good health and a fully functioning prostate. I now say that through the crucible of cancer did I find good health. Will I ever be totally " cured"? Perhaps not, but right now I have the cancer under full control ... not it me.

I am currently in the process of writing a book in which I highlight every detail of my 8 year journey which I hope might benefit others. I hope to have it completed in early 2021.

noahware profile image
noahware in reply to

Yes, people need to realize that the Western medical school is essentially a trade school where doctors learn... to DO what other doctors already DO. And a large part of that means simply following (without exploration) the already-established procedures and protocols of the consensus.

Tall_Allen profile image
Tall_Allen in reply to

Just what we need - another testimony of a miracle cure with diet and supplements! I believe in God, but I know there is nothing more dangerous than people who are sure that they know what He wants. The idea that one can force God to make a deal is a childish conception. Someone already looked into whether people who use complementary treatments survived longer. They found the opposite - the death rate was twice as high.

prostatecancer.news/2018/07...

fluffyfur profile image
fluffyfur in reply to

And maybe your body chemistry and genetics is also helping you survive. You also took/take modern medicine before resorting to your supplements, obviously because you are still seeing an oncologist. I watched my Dad die a terrible death from leukemia, and he resorted to drinking all sorts of concoctions including kombucha/taking supplements trying to cure himself. Guess what? It did nothing. You aren't God and to tell people to stop their treatment and go on some holistic bandwagon is just wrong.

in reply to fluffyfur

Hello friend, just to correct you on something, other than my initial biopsy in 2013 I've never had one iota of standardized conventional treatment to date. I say this only to nullify your false assumption/accusation: <><><"You also took/take modern medicine before resorting to your supplements, obviously because you are still seeing an oncologist"><><><. I have an oncologist because I need access to periodic scans and check-ups.

You have attacked me in another post with the same statement accusing me of "telling people to stop their treatment and go on some holistic bandwagon". tall allen accuses me of the same. I'll say again that NEVER have I EVER told or encouraged ANYONE to stop the treatment protocol they've chosen for themselves. And if you read what I wrote with eyes that take everything in instead of looking only for something that you can twist and then attack me with, you'll see that I said "When the day comes that I see what I am doing no longer works for me, then I may consider conventional treatment too".

Believe me, I'm not trying to convince anyone here, especially you, of anything. I am here only to offer alternative options to those who come here seeking advice for treatment or inquire about alternative/natural/nutrition.

The thing is, I never post blatant biased misinformation about protocols that I haven't chosen for myself just to discourage others from trying them like tall allen did here and as he does in other posts of people inquiring about alternate/natural/nutrition. When I see this occur I stand up and tell my story. My story explains what worked for me. I don't claim it will work for everyone, just as your choice of treatment doesn't work for everyone.

I'm sorry to hear bout your Dad's terrible death. and I truly mean that. It seems you are bitter that he "resorted to drinking all sorts of concoctions including kombucha/taking supplements trying to cure himself". I don't know. If so, I respect that too. But again, I am not trying to convince you or anyone here to do what I do, or to stop doing what they're doing. Again I will say, my only objective here is to reply to people who ASK opinions related to natural/alternative which I have had great success with. And mentioning my faith in God does not suggest that I'm "playing God" as you accuse. You should be ashamed to make such a ridiculous statement.

I understand your stance on maintaining your treatment of choice and I truly respect that. I don't attack you or anyone else for their choices of treatment and sharing their results. This forum is full of such shared experiences. How about you do the same for those of us who make choices that differ from yours? Peace to you friend.

RonnyBaby profile image
RonnyBaby

I have PROOF that curcumin actually assists PCa / PSA producing cells in apoptosis.

I spent big $$$ for independent, third party testing / blood work to test for CTCs and what, if any known cancer inhibiting drug, substance, supplement (anything within reason, including cannabis) could assist me in my fight vs. the beast.

Curcummin was reported as being significant (> 30%) statistically in apoptosis assistance.

(RGCC Group refers). Even some of the chemo agents were listed, so this was no smoke and mirrors !)

I do and did factor 'turmeric / curcumin' as a possible false or artificial number to consider.

My stats (nadir and more) were consistent for months. Assuming that my PSA will actually be higher (post-test), the question would be by how much ? Zero / undetectable was in black and white - for at least 12 months - was this wrong ?

Not all 'curcumin' is absorbed efficiently and the duration (prior to elimination) is in hours, perhaps a day, but beyond that (assuming cessation) the readings should normalize within 24 - 48 hours MAX. IF you are going to publish something 'medical', it would be important to not skew the results with intangibles - such as personal absorbability and uptake !!!

I rely on my curcumin supplement to help with my arthritis (which it does very well - thank you) and I will not give it up - but will for 2 days, prior to my next PSA test, because my PSA number is rising (on ADT vacation) and I want to see where I'm at. (I'm probably around or slightly above the 2.0 mark - so this needs to be 'error free'.

So I would propose a compromise.

STOP taking 'this' supplement for a day or two, prior to reading the PSA - then there will be no grounds for making claims about NOT knowing the real # .....

L'chiam, to life!😄

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

It is a known fact that the word "supplements" mentioned on this forum actually stands for "you don't know your ass from your elbow"..... I'll stick to my chocolate chip ice cream (two scoops)...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 2:13 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

This is such a great post. I am jumping up and down, up and down. efsculpt must be scratching his head and saying "wtf". A new study shows that orange sherbet (3 scoops) is much better than chocolate chip ice cream (two scoops). I myself am testing whether alcohol is a useful supplement. My psa is <0.1. Yearly bone scan on Friday came out stable, no progression. I immediately went and bought 2 bottles of alcohol. Where else can a person find such drama? I am personally donating $50 today to HU. Gentlemen, I applaud you.

j-o-h-n profile image
j-o-h-n in reply to monte1111

Wow................

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 5:11 PM DST

j-o-h-n profile image
j-o-h-n in reply to monte1111

This is for your dessert :

A guy couldn't decide if he should buy a $40 jug of whey protein

so he asked his friend, and the friend replied:"btw"...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 6:03 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Very good. Buy the whey, I've bought a $40 jug of Jack Daniels before. Bought the nutrition 6 pack and poured them down to drain. Nothing that tastes that bad can be good for you. Just donated $50 to Male Care, so it may have to be a $20 jug. I'm keeping a careful eye on the price and availability of this commodity.

j-o-h-n profile image
j-o-h-n in reply to monte1111

j-o-h-n ----------------> monte1111.

j-o-h-n licks the inside top of his thumb and walks over to monte1111 and pastes his thumb on monte1111's shoulder like a medal and exclaims. "Quick show you medal to your family and friends before it dries".... (You deserve it brother)....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/12/2020 6:35 PM DST

jazj profile image
jazj in reply to monte1111

I didn't realize there's any imaging modality currently in existence that has great enough sensitivity to reliably idenitfy PCa lesions at PSA levels < 1.0!

Detection rates were 38% (PSA 0.2-0.5 ng/mL), 57% (PSA 0.5-0.9 ng/mL), 84% (PSA 1.0-1.9 ng/mL), 86% (PSA 2.0-4.9 ng/mL), and 97% (PSA ≥ 5.0).

Is this common practice to do Bone CT scans at PSA < 0.1!?!? Only seems logical if there is a significant chance you could have metastatic disease that isn't producing PSA? Or was that a typo?

monte1111 profile image
monte1111 in reply to jazj

This month marks 7 years with "extensive and innumerable" bone mets. My psa is starting to rise and is now 0.4 I've had a yearly bone scan and pet for those 7 years. I have medicare advantage with Kaiser. I have been stable but that may be changing. Lupron, chemo, Xtandi.

LearnAll profile image
LearnAll

Ignore the one who think who has monopoly over knowledge.

FDA can not decide what food, herbs,spices , We ,Americans eat...or how much exercise we want to do.,,,, If FDA starts dictating all this, USA will become Nazi Germany...freedom to choose our food and eatables is our birthright.

Its about comprehensive ,multifaceted treatment and not narrowly defined SOC by a bunch of people. Let me say again..COMPREHENSIVE treatment is the way.

ck722 profile image
ck722

I find drinking turmeric enjoyable. I get a 1 lb. tub of the "Feel Good" turmeric with pepper at Costco. Place a level scoop in a 16 oz glass of warm water with a tiny bit of stevia. Mix and chug. This is great stevia:

amazon.com/gp/product/B088R...

I started doing this for cancer but came to enjoy it. Somehow, it actually does give you a "feel good" mindset. Subtle, but nice.

Note, not all stevia is created equal, some is downright bitter and horrid tasting. The above is the good stuff.

I have a supplement vs prescription medicine story that I posted a while ago. After a six month eligard shot I developed peyronies -- a downward bend of my penis that made sex very difficult. My urologist gave me FDA approved injections of xiaflex to try and dissolve the plaques. This not only failed to cure the problem but landed me in the ER with painful and distressing urinary retention and six weeks dealing with a catheter. I had peyronies for a year and a half when something Patrick wrote about an iodine supplement helping dupuytren's contracture prompted me to get iodoral -- an iodine supplement. I was aware that xiaflex is also touted to treat dupuytrens. Long story short after six weeks of iodoral use my peyronies problem was gone. Coincidence? Unlikely. Peer reviewed double blind assessment of iodine to combat peyronies? Nah. Unlikely. Who would pay for it? Not big Pharma. All supplements worthless and unproven? Not so.

in reply to

Thanks Patrick! 😂

ck722 profile image
ck722

Iodine. Hmmmm. Good to know. Just in case... Cannabis kept my PSA down until I stopped using it.

MateoBeach profile image
MateoBeach

This post turned into a fun ride. Released a lot of pent up emotions for many it appears. Hate to see it end. Therapeutic mushrooms anyone?

in reply to MateoBeach

Hey Mateo! I’ve taken ImunoKinoko 750 . 4 tabs daily over five years now . It’s a mushroom complex that’s said to promote NK cells to fight cancer .. I like the idea.🌵

MateoBeach profile image
MateoBeach in reply to

Thanks Whimpy. I’ll check that out. I’ve been using Turkey Tail and Chaga in capsules.

in reply to MateoBeach

All good !

I strongly recommend for anyone with an interest in alternatives to read this fully documented case report published in the World Journal of Oncology in 2016.

It's about a patient properly diagnosed with terminal pancreatic cancer who stopped his conventional treatment due to treatment intolerance and switched to a couple of alternatives.

Several years later he was well and scans showed no sign of the cancer.

Not surprisingly the doctors who wrote the article gave credit for his recovery to his earlier conventional treatment.

However they were open minded enough to admit they couldn't completely discount the possibility that the alternatives might've helped.

They even went so far as to suggest it might be interesting to do a clinical trial of chemo followed by the alternatives.

Unresectable Pancreatic Andenocarcinoma: Eight Years Later.

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

Kind regards

Dave

2 to 4 grams of powdered turkey tail mushroom most days in my tea, along with several other items including a cup of broccoli sprouts and a slug (about an ounce) of an extract of garlic and lemon I blend up. In Oct of 2018 my new gp sent me to a urologist with a Psa 159. I arrived that afternoon fresh from the er with a new Foley because of complete blockage. Within 5 minutes after a dre he sat down and told my wife and me that he believed I have metastatic cancer that is incurable but there are some things that he has that could work for years, maybe decades. The agonizingly long weeks after biopsy, scans, and turp confimed his abrupt but accurate diagnosis, though to a lesser degree than he suspected.

I was stunned the first week after the diagnosis and was just able to work and sit around aimlessly. Then I managed to run across an interview with Kelly Turner and got her book Radical Remission. I had been telling my wife that what the Dr actually said was that HE couldn't cure this cancer. Now I started to come alive and as Kris Carr says, I became the CEO of save my ass. I have had 3 six month shots of Lupron and have responded well, though with the usual unwanted effects and the lowest Psa has been 1.87. I started a low dose estradiol last Nov that helped so much with hot flashes, fatigue, foggy brain (wife said I was loopy), and crabbiness - mostly, I think, because I sleep better. I am thankful for these two meds. I am very thankful for this forum. I have been an avid reader for about a year, though I have only ever responded to a post one other time. And I am thankful I have found supplements, including both fresh and powdered mushrooms, that I (not my dr, wife, or anybody else) take, along with rinsing my sprouts, blending my garlic and whole lemon, or juicing carrots. A stranger pointed out to me that I am lucky to be able to make my own medicine. Since I awoke from my stunned first week after diagnosis I have considered this cancer mess an adventure. Some times it sucks and feels awfully old and scary when a new pain or different way or peeing comes up. Some days I feel I will be free of this, and soon. But each day I show up, chop wood, carry water, rinse sprouts, and participate in this adventure. I take the Terry Natually Curramed for my turmeric. It matters less to me if it is proven or disproven to help with cancer than that my intuition tells me it should be with me on this adventure.

I am honored to be among the crew on this site. Thank you all.

in reply to lookingforamiracle

“ Radical Remissions “ should be a must read for the newly dxed. ! It showed me a different way of thinking about cancer. The initial blow of fear of a bad APC dx is tremendous. We are all lookingforamiracle .. One must believe to receive. You’re doing a lot of good stuff. Mmmm broccoli sprouts .. good stuff . Keep rolling partner!

lookingforamiracle profile image
lookingforamiracle in reply to

Thanks, Whimpy-p. I have been enjoying your posts. With the sprouts even TA concedes something, though he would probably prefer an extract and a script. I love to have all the opinions and particularly experiences to look at and see what feels right. Something intangible about rinsing them a couple of times every day. Ritual? I have come to have 3 ball jars in rotation so I always have some ready to eat. Roll on...

in reply to lookingforamiracle

That’s sprouting dedication !💪🥳

treedown profile image
treedown in reply to

I read it very early and it helped me believe in miracles. I still keeping looking for answers to why some do well and others don't. This forum is helping with those.

in reply to treedown

Somehow For me a spiritual awakening must occur to survive with this pest inside .

treedown profile image
treedown in reply to

It did for me and it only took one kiss from my wife and all the old bullshit melted away.

in reply to treedown

The right kiss is worth its weight in gold ! Love cures all..🥳

ck722 profile image
ck722

Nice write-up lookingforamoracle. Consider rectal cannabis. Your PSA might go to undetectable and you will sleep better.

in reply to ck722

And no Extreme high associated by suppositories.👏🏼👏🏼

ck722 profile image
ck722 in reply to

True! You can attain much higher blood levels without being a loopy space cadet.

in reply to ck722

I did the supps initially. I Believe in its curative properties .

lookingforamiracle profile image
lookingforamiracle in reply to

Just CBD in NC. I won't go into what I think about that. It used to be so simple to get in my youth. Unfortunately no lasting benefit for this use.

MSTI profile image
MSTI

Story in profile.

RP, EBRT five years ago. Spent time doing nothing, the only advice was "don't gain weight".

Slow, steady rise, three months to six , then back to three when BCR was close.

EBRT was adjuvant because of PNI, ECE, SVI.

In march 2020. my onco tells me that I would get adjuvant EBRT if only one of three was there (back on 2015/2016).

But today all three would not qualify me for EBRT!

Only five years to radically changed SOC!

It tells something about official medicine.

After that changed way of life, some supplements and 0.08, 0.12, 0,20 went to 0.18.

Wasnt believer in supplements, lost my usual confidence that everything will be ok five years ago.

But there is result.

My onco is not interested in what I do but tells me to keep doing whatever I do.

So many variables are there.

Virgin olive oil....You will be presented with analysis of everything except presence of pesticides, mainly glifosat which is used to kill weeds for at least for last 40 years.

We dont know what we are eating, drinking, breathing.

Brake pads once upon time had asbestos and were banned. What they are using now?

Tyres with new compounds?

Considering all that, I have to give big thanks to knowledgeable people here as Nal, Pjoshea13, whimpyp, learnall and many more.

Between doing nothing(SOC )and waiting for BCR and trying to do something for ourselves....I think that choice is easy.

lewicki profile image
lewicki

Hello Men,I just returned from my fourth treatment at the University of Heidelberg. First thing I did was open this site and read. I found it very stimulating as I am convinced that alternative means along with the approved standard of care can work together to beat this demon.Dr Pienta when he was at Wayne State University in Detroit wrote about modified citrus pectin and its affect on stopping prostate cancer from attaching to its self thus stopping its spread. Then you have Dr Pauling and his study of Vitamin C up to as much as 9 grams daily for cancer. My treatment in Germany has my PSA down to .6 after 3 treatments and disappearance of cancer in the lymph nodes, cancer on sternum is gone. I still show two small lesions on the lymph nodes. after this fourth treatment I hope to see continued reduction in total PSA and a long time before it comes marching back. I have taken many supplements over the last 21 years and believe has had some affect . I still have a prostate gland. As far as the medical standard of care for us I can tell my story of agreeing to do a trial called ESK981. Doctor said give it a try what do you have to lose. I did it PSA went to 747 had three biopsies to the lymph nodes resulting in a blood clot in upper inside of the leg, severe Edema ( almost unable to walk any distance ) and two strokes causing loss of eyesight to my left side and other site issues . Started my trips to Germany last spring. Would have done fourth treat last January but could not get there because of Virus and the radioactive isotope Actinium 225 is only available every other month. Lufthansa filled the plane going to Frankfort but the return flight was perhaps 35 % occupied. Germany has a better handle of the disease. I was told there is a fine as much as 30,000 Eruo if not wearing the mask. Edema pretty much gone now. Hoping for the cancer is in control so I may with continued ADT and supplements I can go on a vacation.

So, I as I read these posts, I wonder if it possible we submit are personal supplement program and organize it to remove duplication. This way I and others would be able to see what might be items to choose. Perhaps list in order of most frequently used by us.

There is a limit of funds and also doing to much that makes it difficult for a newbie to figure out what to do.

What do you men think.

So I now am quarantined in an addition I did years ago for my mother in law. Cannot allow my wife to get the virus as she suffers from COPD.

in reply to lewicki

Your story is amazing and inspiring brother. Feel free to PM me if you'd be inclined to compare notes. :)

lewicki profile image
lewicki in reply to

Hello Hidden, PSA is now 0.08. Been advised by two urologists and one onco to go off ADT. Having hard time doing this. Afraid. How are you doing?

in reply to lewicki

Welcome back home. You deserve a vacation now. Take care

lewicki profile image
lewicki in reply to

Thanks Whimpy-p

lewicki profile image
lewicki

I am good to PM. Most important to stay on the leading edge by sharing.

As many others are sharing their experiences with alternatives I thought I'd share mine too.

I'm 67 years old and I was diagnosed late 2016 with metastatic prostate cancer with mets near esophagus, aorta and groin.

PSA was12.

Biopsies gave Gleeson score 8.

A top surgeon told me surgery no longer an option because it had spread and put me on ADT Zoladex. I elected to have monthly 3.6mg implants rather than the bigger 3 monthly implants.

I stopped the ADT after only 2 months because of side effects. I had been told ADT wasn't a cure, just a way of slowing down the spread. When I stopped ADT my PSA had fallen from 12 to 1.4

Since then I have been taking CBD oil and Essiac tincture everyday and haven't had any surgery, chemo, radiotherapy. I don't take any other drugs (apart from the occasional headache tablet).

My oncologist expected my PSA to continually rise and the mets to continually spread.

For the first 2 years my PSA did indeed slowly rise from 1.4 to 14, but PSMA PET CT scans showed the mets reducing in size which surprised him.

I have PSA tests and oncologist visits every 3 months. My last June PSMA PET CT scan still shows cancer in prostate but mets near esophagus and aorta have now resolved and show signs of calcification.

My last 6 PSA results are 14, 13, 10, 9.6, 8.7 and 10 (the most recent in June 2020). So after slowly rising for the first 2 years after stopping ADT they have now fallen back to a level lower than when I was first diagnosed.

My oncologist is amazed at my results and how well I look and act. He knows what I'm taking and can't explain it, but he tells me to just keep doing what I'm doing.

I know the alternatives I'm taking might not work for others but they certainly seem to be helping me.

Here's a 26 minute documentary about Essiac made in 1979 when its ingredients were still kept secret.(They're well known now.)

m.youtube.com/watch?v=jojYL...

And here's an article that appeared in a 1977 edition of Canadian Homemakers Magazine.

renecaissetea.com/the-origi...

And here's a fully documented case report of a terminal pancreatic cancer patient who stopped his palliative chemo due to treatment intolerance and switched to a couple of alternatives (one was Essiac).

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

Best wishes to everyone.

in reply to

Awesome!...Blessings to you brother!

jazj profile image
jazj in reply to

There are so many variables involved in patient outcomes you really need well designed clinical studies to come to any reliable conclusiongs.

Regarding Essiac

cancerresearchuk.org/about-...

"Research into Essiac in cancer treatment

Most of the websites that promote Essiac use opinions not backed up by research. Some of this information is often anecdotal evidence. That means it is based on hearsay.

The Memorial Sloan Kettering Cancer Centre tested Essiac in the laboratory. They found it had no anti-cancer features.

The National Cancer Institute (NCI) in the U.S tested Essiac several times. Their testing found that Essiac had no anti-cancer effects. One study in 2006 found that when Essiac was added to breast cancer cells in test tubes, it stimulated the cancer cells to grow.

In 2009 researchers reviewed all studies into Essiac and Essiac preparations. They found there were no well carried out clinical trials to show that Essiac can help with cancer.

The CAM-Cancer organisation reviews scientific research evidence. In 2011, they looked at all the reviews about Essiac and Flor Essence. They couldn’t find any well carried out clinical studies. They said that some of its ingredients could cause harm.

We need well designed clinical trials to test Essiac and its herbs. Only then will we know if Essiac works or is safe for people with cancer."

----

I don't argue that some non-pharmaceutical substances can slow cancer progression. But as far as complete durable remission, if there was such a substance you would be able to take a large cohort of cancer patients and reproduce the "cure" in at least a significant portion of the cohort population even if it didn't work for everyone. To date, there is no such human clinical study showing anything other than radical therapies (surgery, chemo, radiation, ADT) can significantly suppress PCa progression long-term or possibly offer permanent remission.

Regarding Curcumin, there was a study (don't have the link handy) that demonstrated it was suppressing PSA to the point people were ending up with more Advanced prostate cancer by virtue of waiting longer to enact definitive treatment. So as one of the other respondents points out, it's good to discontinue it for a few days prior to your blood test. To me this doesn't preclude it from having therapeutic benefits in slowing the cancer long term. Unfortunately I don't believe there are any studies involving Curcumin with long-term follow up to see if it has an effect on time to metastases or time to Prostate Cancer Specific Mortality.

It's also important to understand how some substances upregulate NRF2 which is good for preventing the INITIATION of cancer but has been shown to be a double-edged sword by helping protect cancer cells and helping cancer grow once it is established. Many anti-oxidant substances upregulate NRF2.

That "peer reviewed shit" is what's been keeping me and many others here alive, unlike a good friend of mine that thought he could cure his stage 4 prostate cancer with some of these "alternatives to treatment". I went to his funeral. Sorry. I know, we're only supposed to talk about the success stories since we aren't actually doing any of that peer reviewed shit called scientific research.

I've noticed on this forum that a lot of the people who tout many of these supplement/diet solutions are in the minimum risk category in terms of their prostate cancer. I am skeptical of anyone who claims they have stage 4 prostate cancer and is effectively treating it with unproven treatments, supplements, diets or other religion. Sorry, but I'd like some proof before I lay my life on the line.

People in the low/no risk category can afford to try unproven "treatments" because they don't die if it doesn't work. They weren't diagnosed with screaming high PSAs and bone scans that lit up like Christmas trees.

I don't appreciate people bitching about the terrible "medical establishment" and "Big Bad Pharma" screwing us over, just keeping us alive so they can make more money! Many of us owe our lives to these big bad assholes.

I have no problem with people recommending supplements as long they are safe. Just don't be confusing them with proven treatments.

in reply to

Hi Gregg57

Maybe it's just my interpretation, but I think the word "tout" was a little bit harsh.

I've always considered "touting" as trying to sell something for financial gain, usually in a very pushy manner. Perhaps I missed it, but I don't remember seeing anyone trying to do that.

All I've seen is people, believing what they have taken has helped, enthusiastically trying to share their experiences in the hope that someone else might benefit.

They have nothing to gain, and most would know that speaking out carries the risk of being ridiculed.

Neither my doctor, urologist or oncologist considered my cancer to be in a "minimum risk category".

My December 2016 PSMA/PET ST scan clearly showed my cancer had spread and I was stage 4, so it was most definitely "Get your affairs in order" time. So I immediately prepared my will, enduring power of attorney and advanced health care directive.

I don't consider Essiac or CBD oil to be a cure, but together they seem to be doing a reasonable job in keeping my cancer under control. (The doctors in the 1936 petition to the Canadian government described Essiac as a control for cancer)

I understand that everyone would love to have peer reviewed scientific evidence, and I'd love that too.

In the fully documented case report I mentioned earlier the doctors actually suggested that it would be interesting to conduct a clinical trial of chemotherapy followed by long term use of the 2 alternatives that the patient had been taking. (One was Essiac.)

A clinical trial like that would be fantastic, but I won't hold my breath waiting for it.

Here's another link to that medical article.

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

Kind regards

Dave.

in reply to

First of all, I just want to be clear that I completely respect everyone's choice to use whatever kind of treatments or no treatment they desire. That's a personal decision that each one of makes and I am not judging anyone's personal treatment decisions. My hope is that we all make informed decisions which require us to look at the science behind whatever we want to do.

I however do object to people making unproven claims on the forum about supplements, diets, etc. and falling back on this generic conspiracy theory about how clinical trials are not necessary and just done by big greedy drug companies and how it's not fair to require this kind of proof for diets, supplements etc. because they make no money yada yada.

Whenever someone makes a statement like "I've been taking XYZ supplements and it seems to be controlling my cancer" it might seem that way to them, but there is really no evidential basis for making such a statement. Just because 2 things happen at the same time, does not mean one caused the other. Correlation is not causation. A better way to say it so as not to mislead people would be: "These are all the things I'm doing and taking and this is what is happening with my cancer."

We are also asked to believe that those who offer such things have purely alturistic motives and never have any hidden agenda, are never selling or promoting any products, their own websites, etc. This is quite obviously not true.

As far as I'm concerned, the burden of proof lies with the one making the claims. I'm not really interested in something that works for one person here or there, even it's something that's considered a "conventional" treatment. I want to know how it works for hundreds of people, what the success rates are, what the side effects are, etc.

People who make claims about supplements/diets etc. need to start offering some real proof in the form of clinical trials instead of making excuses why they can't. I would love to have true alternatives that work, I just think it's reasonable to ask for more than one-offs, mouse studies or something that happened in a petri dish.

in reply to

Hi Gregg57

Thank you for your response.

I completely respect your right to feel the way you do.

Perhaps you'd be kind enough to answer two quick yes/no questions?

1. Did you read the medical article that I mentioned in my reply to you?

(It was published in 2016 in the World Journal of Oncology.)

and

2. If you read that article, did you agree with the doctors when they wrote that it would be interesting to conduct a clinical trial of chemotherapy followed by long term use of the 2 alternatives that the patient had been taking?

I can't afford to pay for a double blind clinical trial myself, so perhaps we should just agree to disagree.

Kind regards

Dave

in reply to

I did read the article although it is about one patient with pancreatic, not prostate cancer.

In any case, yes I think research should be done on promising alternatives like this one and as I indicated in my last reply.

Funding isn't the only the hurdle you would have with conducting clinical trials with these alternatives. You'd have to find patients who are willing to try them instead of whatever the standard of care is.

A question for you:

Do you think we have any obligation on this forum to challenge claims made regarding treating prostate cancer that have no scientific evidence to back them up? For example, someone was just talking about how magnetic fields and hot showers are killing his cancer cells.

in reply to

Hi Gregg

57,

Thank you for your reply.

Yes, that article was about a patient with Unresectable Pancreatic Adenocarcinoma, not Prostate Cancer .

I actually thought that made the results even more impressive.

Pancreatic cancer is generally considered the very worst cancer you can get and death often comes quite quickly.

I was pleased to hear that you think more research should be done about that alternative, thank you for your honest answers.

With regards to your question ...

I agree that anyone should be entitled to challenge anything they feel might be dubious, provided it is done respectfully and logically.

Throughout life there will always be different degrees of evidence.

Scientific evidence, expert evidence, patient evidence, historical documents etc.

Obviously in the medical field scientific evidence would be the best of all.

But surely the other types of evidence carry some weight too?

For centuries it would seem that medicine worked by “trial and error”, and what seemed to work was passed down to the next generation.

Just because something has not yet been scientifically proven to work does not automatically mean that it has been proven NOT to work.

Everything that we accept as being scientifically proven today was unproven at some point in time.

I would be dubious about the magnetic fields and hot showers too, as I haven’t seen anything of substance to back it up.

However, there are plenty of expert witness, patient evidence and historical documentation to suggest (but not prove) that Essiac might be helpful.

For example, here are some quotes from an article in the 1977 Canadian Homemakers Magazine article about Essiac and the Royal Cancer Commission ...

-Start of quotes from the magazine article-

Rene rented a ballroom to seat the 387 patients who appeared to support her.

Of those, only 49 were selected by the Commission to be heard.

One by one, Rene’s patients were questioned.

“If it hadn’t been for Essiac and Nurse Caisse, I’d have been buried long ago” was a frequent statement.

“My doctor had given me up”, many assured the Commission.

Again and again, the commissioners questioned the accuracy of the diagnoses the patients offered.

Dr Guyatt testified that “I am satisfied that the patients I saw at Bracebridge were definitely receiving benefit.”

Stating that he had considerable clinical experience, he felt the diagnosed cases of cancer were bona fide.

And after the Commission’s findings were released...

Mrs Annie Bonar, who had been faced with amputation of her arm after a year of radium and x-ray treatments, was livid that her cure was laid at radium’s door.

Rene was quoted in the newspaper as saying, on hearing the results..

“The Commission would not consider any recovery due to Essiac unless there had been no other treatment previously taken. I have been obliged to treat so many cases sent to me by doctors after everything in medical science had been used ineffectively. I have not been allowed to take a cancer case without a doctor’s diagnosis, and in the majority of cases, a doctor will not give me a diagnosis unless he considers the patient beyond the help of medical science.”

-End of quotes from the article.-

That magazine article can be found at..

renecaissetea.com/the-origi...

Unfortunately it’s hosted on a commercial web site, but that’s the only place I could find it so please forgive me and read it anyway.

Best wishes for the future.

Kind regards

Dave

MSTI profile image
MSTI in reply to

Hi Davek,

even established knowledge is prone to questioning.

My RP pathology was GS 4+3, PNI , ECE, both vesicles back on 2015.

Adjuvant RT 2016.

My onco told me four months ago that I would be triggered for adjuvant RT even with only one of three bad factors back then.

But today I wouldn't be candidate for adjuvant RT with all three.

Should I be angry that all "double blind....." whatever.....from that time was wrong, and probably did harm to many people?

No. They did the best they knew .

But SOC is not holly cow for me.

Wish you the best. Fight on.

ctarleton profile image
ctarleton

The Federal Trade Commission is not too keen on claims about Hydrogen Peroxide in the context of COVID-19. For example, .....

ftc.gov/system/files/warnin...

in reply to ctarleton

😂😂

jazj profile image
jazj

Rekindling this thread as I've been recently doing a deep dive into Curcumin which ironically didn't get a whole lot of focus in the replies considering it's the primary title in the thread. Post surgery I'm trying to fine tune a modest/sensible supplement/prescription stack.

Curcumin (especially in high bioavailability forms) has lots of studies and looks to be a wonder supplement - anti-inflammatory, anti-oxidant, antidepressant, anitcancer, you name it. Unfortunately the couple of decent designed studies I found on it specific to PSA shows no benefit in lowering/slowing PSA. (As opposed to a study with a placebo cohort, I give very little credence to any individual's anecdotal reports as in many cases they are taking a combination of things.) However I would consider Curcumin almost a must for general well being and lowering risk of a variety of disease states so to speak. If anyone knows of any *HUMAN* trials with a placebo cohort that shows statistically significant PCa specific benefit, especially regarding PSA progression, please post as I could not find any.

(1) I believe most important is keeping cholesterol in check, meaning statins. Personally based on my reading, I personally believe statins are a must for all PCa patients unless you have really really low cholesterol to begin with.

(2) Vitamin D levels seem to be very important in a U shape curve aiming to maintain in the 45-70 serum range. Vitamin K2 also important especially if you are on a low/no animal protein diet.

(3) Metformin is controversial as some studies say yes, others say no benefit (including the most recent) but obviously a no brainer if you are pre-diabetic or worse. (I'm not pre-diabetic so not taking it) Might reconsider if I was on ADT.

(4) Omega 3 (EPA/DHA **NOT** ALA) has some positive evidence... well actually a low Omega 6 to Omega 3 ratio is the real key (target 4 to 1, average Western diet is closer to 20 to 1)

(5) Pomegranate shows evidence of slowing PSA DT. Extract is cheap too compared to MCP, Curcumin, and Sulforaphane.

(6) Modified Citrus Pectin - shows promise but not a large body of evidence in the way of double blind randomized placebo trials as far as I could see. Expensive dosage regimen.

(7) Sulforaphane - There's some initial good evidence but most people don't understand the relation of Glucoraphanin (+ Myrosinase) to Sulforphane. In a nutshell, this is a very expensive supplement to mimic the 60mg of Sulforaphane used on the most prominent study. Not a large body of evidence of well designed human trials on Sulforaphane to date. Most of the formulations on Amazon are worthless though. A prime example of the Supp industry fleecing people desperate for a "natural silver bullet" to cure them.

(8) Coq10 has some positive evidence. I take it every other day just to keep healthy levels while taking a moderate Simvastatin dose. If you're not talking statins I'd say it's benefit specific to PCa is questionable. There's controversial evidence that it solves the muscle pain issue for people taking high-dose statins.

In general I'm leary of stacking too many anti-oxidants so trying to be very choosy.

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