Pete Lost at Sea

2

Comments

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    Helen321 said:

    I think this is a very

    I think this is a very healthy discussion.  We all care to check on each other, including Pete and so it is good to express thoughts and feelings about banning and posts.

    Pete

    I like Pete and don't think he should be banned. I admire him for focusing all his energies and efforts on survival, and trying so many new things.    I've tried to read his blog and have struggled due to his writing.  He's probably dyslexic or something.

    As far as him being a shill for Hallwang, when/where did he disclose this? Not on CSN. I thought his "job" in Germany had to do with that yogurt?  Regardless, even when someone posts a link to any cure or solution, it's on us individually to do our own research.  Not everything works for everybody.  If something was really a miracle cure, I think the "marketplace" would ensure that it was available everywhere, based on the premise that "a good product sells. "  My godfather is/was German, and he went to a small clinic in Germany for treatment- not Hallwang but another one. He had prostate cancer, and I think he was like 90. It's cultural - he got mistletoe injections, hyperthermia and other therapies.  I don't know if it did him any good but he was happy, I guess, and believed in it. I've written to people about alternative treatments, even Ren and Pete, and nobody gave me a hard sell.

    For those of us stage IVs, especially inoperable multiple met Stage IVs, treatment is a real long shot. I wish he weren't banned because he might stumble upon something really revolutionary, and since this is the board I check the most, I'd here about it here.

    Karin

  • Trubrit
    Trubrit Member Posts: 5,792 Member
    Don't feel bad about posting this, Jay.

    I think we are all posting in an uplifting manner. Nobody has belittled Pete, in spite of our dislike for some of his attacks, rants, or questionable information. Like Helen said, we're all adutls. 

    Also, Karin's post proves that there are people here who enjoy Pete's threads; and I'm sure she is not alone. 

    I am still sorry that he has made personal attacks, and chosen his words unwisely, but if it is therapeutic for him to post, then maybe he should be allowed to do so. 

    I am happy to hear that Pete is plodding on with his chosen treatments.  I wish him all the luck in the world.

     

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    Pete

    I like Pete and don't think he should be banned. I admire him for focusing all his energies and efforts on survival, and trying so many new things.    I've tried to read his blog and have struggled due to his writing.  He's probably dyslexic or something.

    As far as him being a shill for Hallwang, when/where did he disclose this? Not on CSN. I thought his "job" in Germany had to do with that yogurt?  Regardless, even when someone posts a link to any cure or solution, it's on us individually to do our own research.  Not everything works for everybody.  If something was really a miracle cure, I think the "marketplace" would ensure that it was available everywhere, based on the premise that "a good product sells. "  My godfather is/was German, and he went to a small clinic in Germany for treatment- not Hallwang but another one. He had prostate cancer, and I think he was like 90. It's cultural - he got mistletoe injections, hyperthermia and other therapies.  I don't know if it did him any good but he was happy, I guess, and believed in it. I've written to people about alternative treatments, even Ren and Pete, and nobody gave me a hard sell.

    For those of us stage IVs, especially inoperable multiple met Stage IVs, treatment is a real long shot. I wish he weren't banned because he might stumble upon something really revolutionary, and since this is the board I check the most, I'd here about it here.

    Karin

    He has discussed this on his blog,

    and if you search his posts at the Colon Club, he disclosed this fact in one of his more recent posts there.

    I don't make stuff up.

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    I am sorry for bringing this

    I am sorry for bringing this up. I didnt mean to stir up past hurful comments and emotions. You know I love you all and never meant any harm.

    I don't see any problem with bringing it up!

    Pete talks about it openly on his blog.   He says that the admins asked him to abide by the rules here, and he apparently felt he could not do so.  He could be unbanned in a second, I imagine, if he just agreed to their rules.

    I mean, this site is free to us, and owned by the ACS.  If we don't like the rules, there are other forums with different rules.

    And I have to say that I really can't believe that here we have a member calling others names, harrassing them for their tx choices, showing a distinct lack of compassion to many here, and ultimately posting here in a false fashion, as a salesperson as much as a patient, and the answer is "just don't read his posts"?  Given that a person who is trying to sell something has no incentive to be upfront about the reality of his product, that response seems pretty inadequate to me.

    If the mods were to allow all of this, I can't imagine what would be considered "unacceptable" behavior. 

    It's such a clear violation of the TOS to which we all agreed that I can't see what else the mods could have done, although I understand the people who are saying they like Pete personally.  I liked Devotion10, and she too was banned.  She was philosophical about it, and I am too.  It's just a internet forum.  If you agree to the rules, you can post; if not...

    Anyway, Jeff, I think it's good to air things like this, myself, so thanks for bringing it up.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    LindaK. said:

    He went beyond sharing and caring

    If he personally "attacked" Tina about George's treatment choices, I would say that is abuse of the rules on here.  Tina should not have to feel bad about it still.  I, for one, do not understand most of his posts and I know English is not his first language.

    Linda

    Pete is Australian!

    His posts were def hard to read, but dude is not ESL.

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    LindaK. said:

    He went beyond sharing and caring

    If he personally "attacked" Tina about George's treatment choices, I would say that is abuse of the rules on here.  Tina should not have to feel bad about it still.  I, for one, do not understand most of his posts and I know English is not his first language.

    Linda

    Pete is Australian, so I

    Pete is Australian, so I would think that English is his first language - you may be thinking of Pepe. 

    One of the major issues that I see is that Pete's views can influence the newbies on this site.  They don't know of him, so they certainly wouldn't know not to click on his postings as Nana suggested.  And my personal opinion is that he is rather self-centered, always wanting praise for his own choices but rarely offering support to others.  In Pete's own words:  "I dont believe I can offer support, when everyone knows I believe that systemic chemo is killing them cycle by cycle and reducing whatever chance they have of an immune system response".

    And he wrote the following statement in his public blog only a few days after Ren passed away, and it really bothered me that all he seemed to care about was that Ren didn't publicly praise him for recommending the treatments from that German clinic.  Well, gee, they didn't do Ren much good now, did they?!  So very sad for Ren. 

    Per Pete’s Blog at http://petertrayhurn.blogspot.com/2013/12/dubia-gcmaf-conference-2-smartest.html

    “I guess I miss public recognition, after all the effort I put into helping so many friends, its a little like my dear friend Ren, almost every therapy and doctor he used was based on my recommendation and introductions to many doctors. again I expected thanks in public. My need for recognition i guess is futile, well thats how it feels”

  • geotina
    geotina Member Posts: 2,111 Member
    Nana b said:

    No one has the right to ban.

    No one has the right to ban other than CSN. Don't read his post If they hurt you or make you angry.    Many people left this forum due to not being able to talk about prayer, they were shoved off by members.    Despicable.   

     

    Come on folks we have cancer, forgive, even if you can't forget. 

     

     

    Nana:

    Sorry my dear but how dare you!  Pete responded to my post so how could I not read it?  Shame on you and your insensitive response. 

    Tina

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    Pete is Australian, so I

    Pete is Australian, so I would think that English is his first language - you may be thinking of Pepe. 

    One of the major issues that I see is that Pete's views can influence the newbies on this site.  They don't know of him, so they certainly wouldn't know not to click on his postings as Nana suggested.  And my personal opinion is that he is rather self-centered, always wanting praise for his own choices but rarely offering support to others.  In Pete's own words:  "I dont believe I can offer support, when everyone knows I believe that systemic chemo is killing them cycle by cycle and reducing whatever chance they have of an immune system response".

    And he wrote the following statement in his public blog only a few days after Ren passed away, and it really bothered me that all he seemed to care about was that Ren didn't publicly praise him for recommending the treatments from that German clinic.  Well, gee, they didn't do Ren much good now, did they?!  So very sad for Ren. 

    Per Pete’s Blog at http://petertrayhurn.blogspot.com/2013/12/dubia-gcmaf-conference-2-smartest.html

    “I guess I miss public recognition, after all the effort I put into helping so many friends, its a little like my dear friend Ren, almost every therapy and doctor he used was based on my recommendation and introductions to many doctors. again I expected thanks in public. My need for recognition i guess is futile, well thats how it feels”

    And if anyone would like to see Pete in action...

    he just got done hijacking a memorial thread at the Colon Club.  A son posted there about his mother's death, and her terrible experience at the Hallwang Clinic.  Pete, who is such a lovely guy, popped on to talk about how awesome Hallwang is, and how great he personally is doing.  He didn't bother to even respond to the OP, who had this to say to Pete:

    "If your experiences at that clinic were a success, good for you. You were one of the lucky ones. But here in the United States we don’t just give medicine to people that have stage 4 cancer unless they willing fully agree to be enrolled into a clinical trial with a moderate to sufficient amount of data on said medication. 

    So please keep your clinic endorsements to yourself and show some respect."

    This is the kind of person we want on this board?

    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46233&start=15

     

    There's also a very interesting response to Pete from user Maia, in a seperate thread.  She is incredibly smart, and has been the source of the clinical trials info I've posted here.  She has an amazing overview of why Hallwang is essentially a scam.  It's a fascinating read from someone with a lot of medical expertise.  She also has the link to Pete's "financial disclosure" post.

  • sdp
    sdp Member Posts: 181
    Trubrit said:

    Don't feel bad about posting this, Jay.

    I think we are all posting in an uplifting manner. Nobody has belittled Pete, in spite of our dislike for some of his attacks, rants, or questionable information. Like Helen said, we're all adutls. 

    Also, Karin's post proves that there are people here who enjoy Pete's threads; and I'm sure she is not alone. 

    I am still sorry that he has made personal attacks, and chosen his words unwisely, but if it is therapeutic for him to post, then maybe he should be allowed to do so. 

    I am happy to hear that Pete is plodding on with his chosen treatments.  I wish him all the luck in the world.

     

     

    Pete

    I would rather that CSN allow pete to blog - with some disclosure about his employment at the clinic and benefits he receives - like how docs who put up research papers need disclosures about which pharma giant they are supported by financially - in which ever way they may be.....( consultant / advisor etc ) 

    we all know that pete is trying some thing or another that is offered on the allternative ( not main stream NCN approved) path to recovery .... Who knows who may benefit from what ? May be his way is also some type of uncontrolled random study that we may benefit from ( many of us may be those who have been given no conventional options ).

    like some persons who also may see a faith healer.

    Then again if they / we may end up trying something that pete has tried. Some with success and some may be unfortunate not have any effect. Atleast we have some half baked evidence about we are  trying,  that too " human" - not something that has been successful on a rat or a pig.

     I would say please allow him again on CSN.  The newbies may also consider what he may have to suggest ( sell ? ) , and they can take their own call...maybe a disclosure by Pete can help , so that we can make informed decisions.

    We all try various things - supplements based on the advise we get from fellow travellers and also " dr oz's from lala land " who only recommend ( but have never faced the disease and have no first hand experience - which certainly pete has ).  But somehow these advisors have the statistics and the science ...how do they get that and recommend? ( have they tried on themselves ? Any clinical random data over the years ? ).

    then why do we all take those words as gospel and spend millions on supplements ?  We do that because we are led to believe that some mice and pigs have responded in some lab on a controlled and paid for tests .

    And at the same time try and block PETE FROM HAVING HIS SAY.

    PETE - Who uses his own disease and body to take the drugs and later inform the outcome ? 

    How is this fair ! How are we fair to ourselves ? We Look and follow studies and take drugs which someone says works on mice. However , when pete after trying it himself .... We doubt What he has to say ? However, If we do doubt we don't need to follow it  - do we ?

     why are we all seeking clinical trials when we are given no conventional option?  When these trails are sponsored and based on animal studies etc ... Who knows what manipulation may have occurred in the data which may have led to the trial - since mice can't talk and pigs can't fly !

    But , hey if pete suggests and he survives but someone else doesn't. Is that reasonable to block  pete and his meandering thoughts he wants to share ? Is there some logic to CSN ?

    Will they block me if I keep referring to success  ( post links ) of xyz drugs and therapies tried on mice , pigs etc ... And which are sponsored in millions by the pharmaceuticals and they make zillions out of it ? 

    then please pray explain why peter tray hurn not required to be heard ( it is our choice to listen and act ) on this forum? Maybe CSN CAN ALSO choose to make its own disclosure - about financial sources and personal tie ups within the same industry ! 

    Now will CSN block me for these personal views on peter tray hurn And the views I express above ? 

    Please also note. - i have been treated in Germany for past two years but not once tried any recommendation that peter has tried - doesn't mean if one day when I think something he has tried appeals to my sense and situation I may not try . Probably I may seek it out - atleast it would be a informed or calculated risk. Atleast,  when I have taken drugs which seem to have worked on pigs  and mice and I have never heard  them complain, Then what is wrong In hearing pete and why CSN thinks they should block his views on treatment - personal onslaughts by pete  may just be a result of the " chemo brain". When  we discuss that effect and try to acknowledge it exists why we can't give someone the leeway that it may have effected ! 

    Disclosure - 

    I think  I may have made a better case for pete than I originally cared when I started to write - pl understand I have been to germany many times - got conventional treatments - never been to hallwamg - never communicated with any of the docs there - and have no discount at present or in future towards any treatment - I would rather pay 200% on a firm treatment theN Try to take a discount on a " being tested " treatment - FOR THAT SACRIFICE I LOVE PETE ( just kidding - a chemo brain humor ! ) 

     

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Has anyone noticed that just

    Has anyone noticed that just mentioning Pete has caused a lot of animosity among our friends here today?  Things have been so calm and friendly since he's been gone...but now the soap opera drama returns!! Think about it, is this what we all want again!?  He's caused nothing but discourse and ill will on this board, so personally, I am glad that he was banned, and for good reason.  And right now he's out doing yoga and eating his miracle yogurt in Germany while we're arguing with each other - about HIM!  So I think he just got the last laugh folks...you know how much he loves to be the center of attention.

  • Trubrit
    Trubrit Member Posts: 5,792 Member

    And if anyone would like to see Pete in action...

    he just got done hijacking a memorial thread at the Colon Club.  A son posted there about his mother's death, and her terrible experience at the Hallwang Clinic.  Pete, who is such a lovely guy, popped on to talk about how awesome Hallwang is, and how great he personally is doing.  He didn't bother to even respond to the OP, who had this to say to Pete:

    "If your experiences at that clinic were a success, good for you. You were one of the lucky ones. But here in the United States we don’t just give medicine to people that have stage 4 cancer unless they willing fully agree to be enrolled into a clinical trial with a moderate to sufficient amount of data on said medication. 

    So please keep your clinic endorsements to yourself and show some respect."

    This is the kind of person we want on this board?

    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46233&start=15

     

    There's also a very interesting response to Pete from user Maia, in a seperate thread.  She is incredibly smart, and has been the source of the clinical trials info I've posted here.  She has an amazing overview of why Hallwang is essentially a scam.  It's a fascinating read from someone with a lot of medical expertise.  She also has the link to Pete's "financial disclosure" post.

    Oh dear!

    Thank you for the link, AA. 

    Poor Pete! Looks like he spreads dissention wherever he goes. 

    Indeed, Maia seem like a very knowlegble person. Very interesting reading her posts. 

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    He is doing well. Just google

    He is doing well. Just google [content removed by site administrator] and his blog will come up if you are interested.

    true names?

    I suppose the new admins will cite a no "true names" policy but I think it is wrong headed here.

    Googling [IL2  zometa gcmaf] would get you there.

  • ron50
    ron50 Member Posts: 1,723 Member
    Hi All

       If you checked the date I joined you will see it was back in 2001. There have been many emotive events happening on the board during the subsequent years. Considering the aims of this board to help and support those suffering thru cancer I can only fully support the admiinistrators in the way they run the board. Their policies have been spelled out clearly and it is fairly obvious that no correspondence will be enterred into. I can accept that. Ron.

  • LindaK.
    LindaK. Member Posts: 506 Member

    Pete is Australian!

    His posts were def hard to read, but dude is not ESL.

    Crazy

    I guess the spelling and grammar made me feel his first language was not English!  It is difficult for me to follow his posts, my take is sometimes he says he is cured and then talks about new test findings and treatments.  I can ignore him, but just don't like his rude comments.  I read the post on CC he rudely commented on.  What a sad story that poor young man shared.  I think he was brave to share all the details of his mother's visit and her quick decline after spending 2 months at Hallwag.

    Linda

  • Nana b
    Nana b Member Posts: 3,030 Member
    Wow. Arguing, no, maybe

    Wow. Arguing, no, maybe different point of views anyway.  I don't follow Pete, never have never will. but I don't give my back to him. Maybe we need another board for crazy terminal cancer patient.

      

    I just saw your response Tina, sorry you went through that, some people are very insensitive when they are dying.   When ever is there excuse for meanness, really, never.  But my point is being missed. I follow The Lord. Forgiveness. That's it.  

     

     

    Done here., keep the faith...

     

     

     

  • PhillieG
    PhillieG Member Posts: 4,866 Member

    CSN rules of conduct

    You are right, only CSN can ban someone from the site for not following the rules they have set forth.  The one that particularly comes to mind is:

     

    No User shall use the Service to advise or to attempt to influence the views, beliefs, or decisions of other Users about their medical care, their religious practices, or their politics.

    This particular rule goes on to describe situations in more detail.

    Certainly one always has the option of not opening posts on a given topic or by a given user, but that is not the point.  The point is that we are all expected to abide by the rules we agreed to when we joined.

    The ultimate decisions are those of the Administrator.

     

     

    Rules are Rules

    image

    it figures I come back and post on this!

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Nana b said:

    Wow. Arguing, no, maybe

    Wow. Arguing, no, maybe different point of views anyway.  I don't follow Pete, never have never will. but I don't give my back to him. Maybe we need another board for crazy terminal cancer patient.

      

    I just saw your response Tina, sorry you went through that, some people are very insensitive when they are dying.   When ever is there excuse for meanness, really, never.  But my point is being missed. I follow The Lord. Forgiveness. That's it.  

     

     

    Done here., keep the faith...

     

     

     

    Um...

    Pete has a blog, so it's not like he's being denied a voice. He also posts at the CC and at Colon Chat.  And if people want to, they could comment on his blog.  I do read it (because for a long time I liked Pete and was interested in the things he was trying), and I've never seen a comment there from any of his CSN supporters.  I don't really understand that.  If people really want interaction with Pete, that is the simplest way to achieve it without inflicting him on the rest of us.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    PhillieG said:

    Rules are Rules

    image

    it figures I come back and post on this!

     

    The giant thumbs-up!

    I've missed that around these parts...

  • Nana b
    Nana b Member Posts: 3,030 Member

    Um...

    Pete has a blog, so it's not like he's being denied a voice. He also posts at the CC and at Colon Chat.  And if people want to, they could comment on his blog.  I do read it (because for a long time I liked Pete and was interested in the things he was trying), and I've never seen a comment there from any of his CSN supporters.  I don't really understand that.  If people really want interaction with Pete, that is the simplest way to achieve it without inflicting him on the rest of us.

    Exacty. Quit copying and

    Exacty. Quit copying and pasting his blog comments here. 

    Going off CSN.  

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    Um...

    Pete has a blog, so it's not like he's being denied a voice. He also posts at the CC and at Colon Chat.  And if people want to, they could comment on his blog.  I do read it (because for a long time I liked Pete and was interested in the things he was trying), and I've never seen a comment there from any of his CSN supporters.  I don't really understand that.  If people really want interaction with Pete, that is the simplest way to achieve it without inflicting him on the rest of us.

    ...their site ID-registration linking requirements are a little tedious and/or invasive.  If I want a byline, a burner pseudonym,  or linked/verified ID, our desired choices should be made easy for potential commenters.  I typically don't bother with anything that requires Google/Discus etc login.  Also conversation volume begets more volume to beget a real conversation.