We have again just witnessed another example of the kind of blatant self-promotion we have seen too much of on this forum.
Don't know about you, but I am so tired of listening to people hawking their alternative BS agenda and trying to create their own "brand" of "works-for-me" unproven non-treatments, often while disparaging the Standard of Care with conspiracy bullshit. People making claims without any kind of supportive evidence, expecting us to buy into their nonsense.
Now it's gotten to the point of trying to sell books on forum.
Everyone please complain to the moderators if you are tired of this crap.
For those that missed it (posts have been deleted) A new person posted about his 19 year survival with prostate cancer. Lots of people gave congrats and also wanted to know what treatments he had done to achieve this great success. He gave no answers. Then, in the next post, he suggested we read his book to find out and provided a cost and link to buy the book.
I agree. This is just one more in a series of attempts by individuals on the forum to create their own individual "brand" of special protocols they use and that's why they have been able to successfully treat their cancer. Some have even gone as far as concealing or being dishonest about their SOC treatments to try to push their BS. I've seen several examples of this.
It’s a special kind of narcissism that flaunts ones good luck at the expense of so many of ‘others guys’ noble testaments....I’ve learned that good results are a feast best eaten cold.
Unfortunately, people are using their good luck or low risk/remission status as a soap box to lecture the rest of us from. A lot of it is attention-seeking.
Thank you for posting this. I have only recently joined this forum, my husband was diagnosed with prostrate cancer last week.
I've not posted or asked any questions yet (mainly because I don't know what to ask) but I've been reading through posts trying to educate myself. When I saw the first post that really lifted my spirits, then I saw the 2nd post and was so throughly disappointed that I wondered if this forum is for me. I'm glad to see the forum is not used for monetary gain.
Thanks for sharing your observations and really hope you stay with us.
What bothers me a lot is the level of self-promotion going on here and it's not just monetary gain. A lot of the members are trying to come up with their own special programs of various alternatives, diets, supplements, "protocols", etc. often while berating the standard of care.
I think it's a real distraction, especially since it can confuse new people who are scared and overwhelmed with their diagnosis. We also have to sift through some of these posts to find the proven treatments we need to survive as long as we can.
I agree Greg this is all very confusing especially in the beginning though I feel I am just getting a handle on SOC. The more I am on this forum the more it becomes interesting to hear the different views. But making actual decisions on treatment is a whole nother level. I was definitely that guy that gravitated to alternative treatments early on and steared away based on the information I was gleaning from the research I could fit in while dealing with everything. When I read about people doing well on just alternative I feel my head pulled in that direction still. This community keeps me grounded and I can't express how glad I am do have found it.
Levers, trust me this is the forum you want to be on. I also am a wife who’s hubby has been diagnosed and is fighting the cancer.
We have obtained so much info and guidance from the men on this site.. when my hubby was diagnosed I felt alone didn’t know where to turn or what questions to ask.
They have all made myself and my husband more knowledgeable about what is out there for us and where to go for treatment.
Stay on this site there is no other site like this.
Prayers to you and your hubby and to all men here fighting this cancer
Must admit I was a bit suspicious when I saw 19 years survival and only one post. Gave him the benefit of the doubt, and didn’t see his subsequent post. Glad to see he has been outed.
Even with the best treatments AND lots of luck, 19 years with stage 4 is very rare. From what I could tell from his book reviews, he didn't use SOC treatments so I'd need to see lots of evidence to even believe his story. "Extraordinary claims require extraordinary evidence." Carl Sagan
While I understand gregg57's outrage, and I agree with the spirit of most responses, I think I (and other members) can be presumed to have at least moderate critical thinking skills. So I prefer that Darryl be quite inclusive with regard to unusual theories and unsubstantiated claims. The flaws in these posts can be, and usually are, exposed in replies. Of course posts with an economic gain objective should be deleted.
It would appear to me the posts were meant to benefit himself and IMO posts should benefit the community. That being said I do appreciate hearing people's opinions both positive and negative about both conventional and alternative treatments. Clearly conventional is expected to be supported by science and alternative is assumed to be opinion. Both can be a handful fortunately I find as the community speaks I learn.
Well, we don't pay much attention to "mockery," but we do restrict spammers, scammers and biggots as well as those who threaten or comit serious verbal abuse. There have been a handful of people who are removed from the community for fraud or for attempting criminal acts.
After protocols , the docs are lost and they just wait for cancer to appear again.
Very disturbing...I tell my URO RO that no use seeing you as you are just waiting for PSA to up...till then nothing
Discussions on keeping nescient cells sleeping or killing them is a must...But no doc talks about it.....Senolytic senostatic
therapies are the key...Nala initiated this topic.... Lot of publications in this topic..started with prolonging life groups..
SURE we should have check on fake members,fake treatments and people who use it to promote their own fake egos or to promote a product for personal financial gains...
Let us all especially our knowable friends be aware and help us in stopping wrong snake oil hopes...
Self promotion for commercial reasons is endemic the world, and unless a moderator stamps it out, it will continue.
To prove I am not hypocrite in this regard, my website is all the info about making or repairing amps, loudspeakers, radio and other audio test gear and a big page on "Patrick's concerns" about my story so far about Pca is completely FREE.
Long ago in about 2002, I realized it was pointless trying to get rich by having a website.
So I concluded that if I could not make money by online activities including selling books I wrote, it was much better to have the huge blog or informative website and I become known as an expert in the field of tubed audio gear etc, and include a candid true story and a Psa Graph since 2008 that basically says "Watch out fellas, all this stuff could happen to you if ya don't get diagnosed soon enough."
I've learnt a lot about how Pca affects men along the way. I don't want ONE CENT for sharing my story, and ALL the facts are there to read.
I have found that zero alternative remedies for Pca have never ever reduced my Psa or helped reduce the total mass of Pca tumors.
Quite a lot of standard protocol steps for Pca treatment such as EBRT, ADT, more IMRT, Cosadex, Zytiga, Chemo, in about that order did not remove the threat that Pca might spread fast and kill me at any time since 2009 when I was diagnosed Gleason 9, inoperable, and age 62, and when I was very fit with no other co-morbidities.
Other men have often had an entirely different story about Pca and its treatment. Many never post here because after an RP, they have had Psa = 0.000 for last 8 years, and they never needed ADT and the procession of drugs that didn't do very much to kill their Pca cells. I met a man today who had no trouble after an RP in 2012. But a friend dies last year who only lasted 3 years after diagnosis, and all things the doctors tried did not work for long, or at all, and some drugs made his Pca grow faster.
He never seemed to have time to make a website blog page to explain what happened to him. But I sure don't mind if many other men do, and it allows any reader to view his details, and perhaps make intelligent suggestions about his treatment. Not all of us can do a blog that is a good read.
But what we do have here is a pretty good account of what us advanced patients have to suffer, we have a common point of interest, so hence a shared experience, and and many have learned a lot. So I don't feel so alone as a result, and I like the wives, sons, daughters who post about their husband or father who is in terrible trouble, and at times I'be been in tears at my keyboard, because I feel ppl are talking with me while they are of course talking to everyone here.
Meanwhile,
I had another 5th shot Lu177 last Friday, all went well. I wonder if the Veyonda, aka Idronisil is doing anything. Maybe we may see if I get an unusually large Psa reduction in coming weeks.
But I think I am having a side effect from Veyonda, where maybe at 11pm I begin to feel slightly nauseous, and there is a nasty metallic taste in my mouth. It can't be too bad because if I massage the acupuncture points in the inside of my wrists to reduce nausea, it goes away in minutes and so does the bad taste.
Today I cycled 40km, and that had me feeling very well, after 3 days of no ride because of the train trip to Sydney to get Lu177, and then followed by 2 days of atrociously bad wet winter weather and cold. I met a girl while out on my ride, and said "Gees its a real nice day for a ride eh", and her cheerful "Yeah, sure is" with a smile made my day.
I have only got to take 20 capsules of Veyonda, twice a day, and so from 2 days before shot of Lu177 to 8 days after, and I guess it has a lasting effect of a few days, and by then the amount of PsMa boost to attract Lu177 circulating in my bloodstream will have subsided and no need for any more Veyonda to be taken, unless docs tell me I should for some other reason.
So far, slight increase in dry mouth, but nothing worth worrying about. Pains and aches have reduced, and this is opposite to what docs said would happen, ie, they forecast a pain flare after this dose of Lu177. It has not happened yet.
Patrick I hope your Lu Veyonda goes well. I just had my 6th Lu treatment a couple of weeks ago in NZ (without Veyonda). All good, acceptable side efffects. Onward and upward. Rob
Thank you Gregg. Had no idea that was the motive for his post. I to wanted to hear about how this patient was able to live longer than average. End the end looks like he was a sorry self-promoter since he didn’t get very far.
I would call 19 years with stage 4 nothing short of miraculous and we have a right to be skeptical of such a success story.
However, 19 years after succesful prostatectomy is not so uncommon. If he had prostate cancer at all, my guess is that his stage 4 was really successfully treated stage 1.
That's great that you got 6 1/2 years out of Xtandi. I was diagnosed at stage 4 with mets all over my skeleton. My T99 bone scan lit up like a christmas tree.
Often some people don’t talk about what stage they were diagnosed at? And how it progressed over the years. This really causes a confusion and also creates a false ‘hope‘ for those recently diagnosed with much advanced disease.
Exactly, and that's part of the problem. If someone says they've had prostate cancer for 20 years and is stage 4, 19 of those years could have been in remission. Not saying that's the case here.
If you get more than 10 years at stage 4 you are in a small minority of really lucky people. 19 years at stage 4 is very unlikely.
Another thing about someone who has lived with stage 4 for 19 years is that when they were diagnosed in 2001, there were almost no treatments for stage 4 prostate cancer. You had ADT and that was it. Docetaxel would not be approved for another 2 years. So someone diagnosed with stage 4 in 2001 probably would have lived to see Docetaxel approved, but back then 77% died before 5 years. It's much better than that today, but someone diagnosed in 2001 would have had a tough time getting to 2020.
Agreed. I see the replies above and understand that the initial diagnosis was lesser burden and treatment started with a successful RP as well. Which we likely assumed. Because being diagnosed with stage 4 and mets all over skeleton is so different from reaching stage 4 with some mets after years of treatments.
It's great to see guys that have had succesful early treatment and the majority never progress to stage 4.
Sometimes, there's seems to be kind of a disconnect between those who are essentially in permanent remission and those with Stage 4 who are struggling with life and death decisions. There's a different sense of urgency.
I definitely don't appreciate it when people are criticising the Standard of Care that they don't need to survive.
And quite frankly, I do often wonder why some of them are even on an Advanced Prostate Cancer forum in the first place.
Agreed. Someone in long term remission with maybe just RP and Lupron cannot understand the importance of SOC for Adv Pca.
I wondered the same. I do wish there were separate groups since Adv Pca requires more immediate action / care / advice. I’m assuming this is the most active group and so everyone (Including those that don’t fit the criteria of Adv Pca) want to be a part of it.
Thanks. If you check the profiles of the people who push the unproven stuff, you'll find that most of them either are in long-term remission or might not even have prostate cancer. It's easy for those people to lob critical comments about how terrible conventional treatments are for advanced prostate cancer and complain about the awful side efftecs, how the evil medical empire is making all this money and not actually curing cancer, bla bla bla.
Honestly, I wish they would shut up and get off the forum.
But they have nothing to lose because they can do absolutely nothing and still live a long time. I've seen people on this forum that only have lots posts about unproven alternatives and nothing about what treatments they are doing or anything about their cancer. Or they are in long-term remission and talk about how all of this stuff is "working" for them. Since the rest of us are failures, we should feel obligated to listen to their wisdom.
Unfortunately, some of these people are preying on the vulnerability and desparation of those who are terminally ill with things that sound good. I think it's important for us to speak out against this. I hope others will join in that effort.
Thanks for talking about it. Back when we had to make a decision about chemo v/s zytiga, there were few who told me some horrible things abt what chemo could do. (Ironically some of them neither had chemo nor were in a situation that needed it).
It helped me to see through better and now I’m more cautious. But ofcourse as you said someday someone new or someone in desperate need can fall prey to false advertising and advices.
I’m glad you spoke about this and hope more will do to spread the awareness.
I remember being lectured by someone about their extensive and meticulously detailed diet regimen, I felt looked down on during the entire thing, like I was a failure, like it was somehow my fault for having cancer.
People out here in California follow some of this stuff like a religion and can get really judgemental. (I call them healthier-than-thous). And I think many believe if you get cancer you didn't follow the proper (their) diet, supplements, exercise, yoga or whatever else they do.
When I mentioned that I did chemo, he freaked out "Oh no, don't do that! That's poison, it's so bad for you!" Bla bla bla.
Some of these people really live in another world and can't relate to those of us with advanced cancer.
Hahaha yes they do live in their good own world. People will recollect one bad memory of their aunt / friend who had chemo 10 years ago and everything went downhill. And suggest everyone in their way to never have chemo. Just so easy to give out huge life saving advices when one doesn’t have cancer themselves or the adequate knowledge
Good morning Brothers. Wow false hope for monetary gain . I'm off to my monthly PC Doctors appointment blood numbers are all good I feel good for the most part and looking forward to a good visit. I'm going on three years with all the standard of care from my medical team . I don't trust anyone that makes unsubstantiated claims so I'll stick to my Zytiga, Eligard, Xgeva and Provenge. Wish me luck today . Never give up never surrender. Leo
How did you receive the advert? email or snail mail? Email is notoriously insecure and easily harvested from the internet. In addition it is cheap (as in free) to blast out emails and if they receive 1% or less response they are making money.
If snail mail it is possible you are on some mail list that has been sold.
Neither Malecare nor HealthUnlocked sell or share contact information with anyone, any group or anything else (unless you ask us to, as in opportunites for focus groups, clinical trials, etc).
Good work, we all are striving for a long survival but that post was very suspicious as he didn't respond to any of the comments. I missed the post pushing his book. Anyone who has true info to help all of us with this fight, will gladly and proudly share. Anything less is despicable to me, especially for personal gain and no true facts.
There was a slight clue in the opening of the 1st post as I recall when he made noises about violating the standards of the site....and then went into setting the bait by not stating how he had accomplished this 19-year miracle. That should have been a red flag.
Preying on those already dealing with far too much on our plates....a new low.
I think a lot of these people don't really care about what others are going through with cancer. They are too wrapped up in their narcissistic agenda trying promote non-treatments and sell them to vulnerable cancer patients desparate and looking for hope.
Anyone can say they had stage 4 cancer and successfully used whatever nonsense they want to. How can we really know?
I've seen people on this forum trying so hard to prove that whatever alternative they are trying is working, they selectively omit or even lie about Standard of Care treatments to help them "prove" their non-treatments.
One example is someone who is using a lot of different diet and supplements to supposedly get his PSA down without ADT. He made a claim that he has been off ADT for 8 months now and still has a PSA or .2. Must be working right? Well, he left out the fact that his testosterone is still at castrate levels. Ooops. Another claimed that hot showers and magnets were actually killing his cancer. Forget that he was also taking Lupron and Xtandi.
I had a friend who fell victim to this kind of thing so it really is a serious matter IMO.
Gregg57 I am with you my brother! It is awful that everyone is always trying to make a dollar on those of us who are on for support, science and brotherhood. I’m with you all the way.
I completely missed the promotion. When my husband was first diagnosed, my head was swimming in information. I was so confused, we were/are doing conventional but wanted to add alternative to up our chances.. well that opens a can of worms.. do I do Gerson(for him), do I listen to Truth about Cancer and go to a clinic outside of the US(for him).. etc...
Visiting with an Integrative Medicine Doctor really helped. He was worth every penny as he helped me sift through the options and pick ones that were complementary to our treatment.
You can reach the author and express your feelings about his use of a support site for shilling a book at ibeery at yahoo. If you google him - Itzhak Be'er...you can find his phone number on his Shaman promotion site.
I found it amazing that he had so many 5 star reviews on his book until I thought about it.
Everyone wants to hear this kind of story where someone goes against the evil empire of greedy drug companies and the Oncology Alien Death Star and beats the odds. He's a kind of hero to many for that.
But the reviews come from people who don't have life-threatening stage 4 cancer and can afford to fantasize about fiction like this.
For many, it's all about what sounds good and reinforces what they already believe, not dealing with the harsh reality like we are forced to do.
There seems to be a lot of that. Especially people hawking natural cures and then asking members to email them for more details. It's like one giant pyramid scheme of charlatan bullshit.
There are some people who lurk in the shadows most of the time, popping their heads up occasionally to promote some kind of alternative to treatment, probably trying not to stick out.
They say little if anything anythng about their cancer, only offering up bullshit unproven "treatments" and probably links to a wesbite somewhere. I saw one the other day that had a lot of posts, maybe 20 or more.
There was one guy recently going on and on about his natural treatment and at the end of all that, he too stated he was writing a book. He also keeps posting links to his website. When I confronted him about it he got very defensive. People praying on others who are desperate for some type of help to keep living are the most vile.
But there's no need to do a clinical trial on this treatment, we should just accept that it worked for him as proof. Besides, only the greedy drug companies have enough money for clinical trials and nobody makes money off of his stuff (well, maybe a little).
I'm not a fan of the high prices we pay for the SOC drugs, but price just might have something to do with the fact they work?
If you are dying of thirst in the desert, a $200 bottle of water might be a bit hard to swallow, but it still saves your life.
I think we should have a separate forum for the alternatives folks. I doubt they would like it though. They don't want to be stuck with a bunch of other bullshitters.
Geezamacripe....And I just finished my biography titled "My twin brother was an only child"... Not published yet..... My twin brother is proof reading it.....We are not on speaking terms since I once accidently shot him in the head in a botched suicide attempt....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 07/28/2020 7:21 PM DST
I totally agree that anyone trying to use this forum for monetary gain should be banned.
I also think that anyone suggesting other members ignore their own doctors’ advice deserves to be severely chastised.
However, before we rip into members just for writing about alternative or complementary treatments, please consider the following hypothetical situation....
Please imagine that you had decided to try something which your doctors advised wouldn’t possibly help you, but wouldn’t do you any harm either.
Remember, this is purely hypothetical, so please just try to imagine it.
Now please imagine that, much to your surprise, it actually seemed to help you, certainly not a cure, but it seemed to help.
Now please consider how you would answer the following questions in this very hypothetical situation.
..
1. Would you keep what happened to yourself, due to concerns that others might think you crazy, might call you names and try to shut you down?
2. Would you want to share your story hoping it might help others, even though it might not work for them and you would run the risk of holding yourself up for ridicule?
What would you do?
Kind regards
Dave
• in reply to
No one is objecting to people sharing things they do that help them with others here. There is a lot more to fighting cancer than drugs, procedures, tests, etc. Telling someone, "hey I do such and such and it's helped me" is great. No problem at all with that.
The problem is when people start taking things that they believe have worked for them and start marketing them to others, promoting themselves in the process, providing links to their websites, products, books etc. And yes this happens here, unfortunately.
And it would happen a lot more if no one said anything. There are people who say "I do XYZ and use conventional treatments." Fine, it's their choice. Just don't start making claims here like: I got my PSA down by using XYZ diet and supplements, I cured my cancer with such and such unproven treatment.
And then it's a short jump to things like: Conventional treatment offers options that can be effective but the recurrence rate is high, even higher than your doctor will tell you. But aside from that, you will likely be left with significant permanent side effects so this is why many men consider alternative/natural protocols.
That is a direct quote from a post. Complete with a link to his website so you can see more non-treatments.
These are the kinds of things we should object to here on the forum.
That's great to hear.
We both seem to agree that people shouldn't use the forum for personal gain.
We both seem to agree that people shouldn't try to convince anyone to ignore their doctor's advice.
We both seem to agree that it's ok for people to leave their opinions of what they believe may have helped them.
I am sitting here listening to Dr Fauci discuss the hydrochloroquin (spelling ?) issue with the President postings and Fauci stressing the need to follow science and clinical trials. Sound familiar?
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Fever and Low Hg in bone metastases (Emergency)
Help to do BAT treatment for my dad. Located in Norway.
My Husband's update after Pluvicto.
