Manwithnoname/Tony has sent me a link to his Facebook profile

annalexandria
annalexandria Member Posts: 2,571 Member
in Colorectal Cancer #1
Ok, folks, it appears apologies may be in order. I've looked at Tony/MWNN's profile and I'm pretty confident he's legitimate. It has both recent posts referencing his son's surgery (but preceding this argument) and older posts referring to the fundraising efforts. There are also photographs of his son post-surgery. As Winter Marie has already confirmed that he has access to the fundraising website, I don't see how he could be co-opting this story as his own for scamming purposes. I've done a fair bit of research on the topic of cancer fraud, and I would say that this case doesn't fit the bill. I think he had the misfortune to jump into this discussion at the same time as the scammers, and has been caught up in the bad feelings toward them. Ann

Comments

  • christinecarl
    christinecarl Member Posts: 543 Member
    #2
    Well I hope he is legit.
    Well I hope he is legit. But in the defense of others, when you come here posting on the colon cancer board without either having it or being a caregiver, while pushing alternate treatments, we are skeptical. Many of us have seen people shilling on here for financial gain. We have all seen people in the news either pretending to have cancer to get money or make money off the hope of those that suffer.
  • janie1
    janie1 Member Posts: 753 Member
    #3
    christinecarl said:

    Well I hope he is legit.
    Well I hope he is legit. But in the defense of others, when you come here posting on the colon cancer board without either having it or being a caregiver, while pushing alternate treatments, we are skeptical. Many of us have seen people shilling on here for financial gain. We have all seen people in the news either pretending to have cancer to get money or make money off the hope of those that suffer.

    Thank you, Ann.
    I didnt have
    Thank you, Ann.
    I didnt have the 'facts'.....but in my heart i was seeing MWWN as a parent desparately trying to find a 'solution'.
    Yes, it could have been something else, but i was seeing it as desparation, because I dont know what I would do if i had a child with a fast- growing brain tumor. Maybe i read into things too much, but i first try to see what is really going on.
    Thanks for taking the time, Ann
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #4
    thanks ann for the apology
    I think tony is the best thing since sliced bread.

    Feel free to use your amazing investigation powers, don't be afraid to use your analytical mind to all the treatments coming my way or here.

    you had me questioning tony for a second, doubt is so incidious and our faith so fragile.

    whats fraud, thats a whole other question. but i want to thankyou for the apology because as i said in my post, i liked tony's support. i was already doing my trial, to have someone, even a man with no name to offer support well. i appreciated it.

    i know what i do here does not appeal to many here really , at least to the extent i judge from supportive comments. thats cool, i have given up expecting them, but to see a support attacked well i guess i felt embarrased, saddenned. i asked for kindness, and it was like well pooring fire on the petrol.

    who is to say whats a scam.

    I have faith in my medical team, their advice. Mark my words that the skeptics are on very shakey ground, because if gcmaf is proven to be effective, even for lets say 5% meaningful improvement. maybe the so called scammers of today, some of them may turn out to be heroes and some well are devils.

    I appreciate your research, we all help each other in our own ways.

    Tony did not jump into any discussion, he has been supporting my gcmaf posts since i started them 2 months ago. he has been a major contributor to gcmaf here. his contribution may actually save some lives in the future. now that is a positive thought, and tony can be proud of that.

    Here is not just another dad, he stopping off to help me another dad, he gets horribly treated. really shameless. welcome to the very ugly side of colorectal support forums. its not even his cancer or his sons.

    I have not been wrong about exercise, diet, meditation and i hope my goodluck continues with gcmaf. i can at least hope.

    You can imagine the intensity of my displeasure at the level discussion in my thread.

    Ask yourself one big question ? If say some of the claims of gcmaf turnout to be true.

    I would ban the skeptics from trying it, if i had my way. heck i think they would say they supported it and it was only a misunderstanding.

    Anyway i hope i am on a winner with gcmaf and if it helps someone else then great. if not well it does not mean its a fraud either, simply it did not help me, so has not been thoroughly evaluated.

    until we have onco gene analysis, biological profiling and of course our genetics all current based clinical trials in my books are just primitive.

    hugs,
    Pete

    ps i am being to serious, i need to smile more. but i wanted to offer tony my support as i do everyone including my wonderful skeptical friends.

    pps the silver lining here, is that we have to be alive to argue. now if this is our forum, this is our life, well its not perfect, but its what we got so we might as well be grateful for each of us while we got each other. i am looking for my warrantee card and cannot find it. but i also don't have a useby date either. i will contemplate that tomorrow

    ppps my real displeasure is based on only my belief that love is healing, so having loving vibes here is what we all need to help us heal. i hope thats not counted as medical advice. dealing with real emotions, well despite some of the pain hear we have gotten lots of things off our collective chests. i hope thats not sexiest. should i have said breasts as well.
  • abrub
    abrub Member Posts: 2,174 Member
    #5
    I understand the skepticism
    A few years ago, a bunch of us on the chat and the expressions were taken in by "an 18 girl with terminal lymphoma who had an infant son."

    She and her supposed family drew us in to her heartbreaking situation for several months before it was discovered that it was all a fraud; someone playing at our expense. Thus, someone who comes in with a singular agenda, which is not colorectal-related rightly raises flags for us. In this case, it points to being legit. However, once burned, twice shy.

    We, as a group, are both caring and fragile. We don't want to be toyed with, and need to protect ourselves. I'm sorry that we hurt Tony, but we were acting on instinct. I'm sure he would have done the same in a parallel situation.
  • manwithnoname
    manwithnoname Member Posts: 402
    #6
    pete43lost_at_sea said:

    thanks ann for the apology
    I think tony is the best thing since sliced bread.

    Feel free to use your amazing investigation powers, don't be afraid to use your analytical mind to all the treatments coming my way or here.

    you had me questioning tony for a second, doubt is so incidious and our faith so fragile.

    whats fraud, thats a whole other question. but i want to thankyou for the apology because as i said in my post, i liked tony's support. i was already doing my trial, to have someone, even a man with no name to offer support well. i appreciated it.

    i know what i do here does not appeal to many here really , at least to the extent i judge from supportive comments. thats cool, i have given up expecting them, but to see a support attacked well i guess i felt embarrased, saddenned. i asked for kindness, and it was like well pooring fire on the petrol.

    who is to say whats a scam.

    I have faith in my medical team, their advice. Mark my words that the skeptics are on very shakey ground, because if gcmaf is proven to be effective, even for lets say 5% meaningful improvement. maybe the so called scammers of today, some of them may turn out to be heroes and some well are devils.

    I appreciate your research, we all help each other in our own ways.

    Tony did not jump into any discussion, he has been supporting my gcmaf posts since i started them 2 months ago. he has been a major contributor to gcmaf here. his contribution may actually save some lives in the future. now that is a positive thought, and tony can be proud of that.

    Here is not just another dad, he stopping off to help me another dad, he gets horribly treated. really shameless. welcome to the very ugly side of colorectal support forums. its not even his cancer or his sons.

    I have not been wrong about exercise, diet, meditation and i hope my goodluck continues with gcmaf. i can at least hope.

    You can imagine the intensity of my displeasure at the level discussion in my thread.

    Ask yourself one big question ? If say some of the claims of gcmaf turnout to be true.

    I would ban the skeptics from trying it, if i had my way. heck i think they would say they supported it and it was only a misunderstanding.

    Anyway i hope i am on a winner with gcmaf and if it helps someone else then great. if not well it does not mean its a fraud either, simply it did not help me, so has not been thoroughly evaluated.

    until we have onco gene analysis, biological profiling and of course our genetics all current based clinical trials in my books are just primitive.

    hugs,
    Pete

    ps i am being to serious, i need to smile more. but i wanted to offer tony my support as i do everyone including my wonderful skeptical friends.

    pps the silver lining here, is that we have to be alive to argue. now if this is our forum, this is our life, well its not perfect, but its what we got so we might as well be grateful for each of us while we got each other. i am looking for my warrantee card and cannot find it. but i also don't have a useby date either. i will contemplate that tomorrow

    ppps my real displeasure is based on only my belief that love is healing, so having loving vibes here is what we all need to help us heal. i hope thats not counted as medical advice. dealing with real emotions, well despite some of the pain hear we have gotten lots of things off our collective chests. i hope thats not sexiest. should i have said breasts as well.

    Thanks Pete
    Doubt is a demon that's for sure, but also a useful ally.

    This is from a personal email to you on July 9th; you probably forgot, I did.


    "Yeah I read about the yoghurt, not sure if its as powerful but at least no injections, might be good for kids.
    Pete I am 100% convinced that Gc-MAF kills cancer, Im not 100% convinced about the companies making it and selling it, I mean is it the same formula as Yamamotos and other clinical researchers."

    I hope this clears up any doubts about me being a salesman and shill.

    also I didn't just 'appear' here this is my first post, please scroll down and read the rest;

    http://csn.cancer.org/node/241453#comment-1241417

    and from a another email on the same day;


    "I don't believe NDV is a 'total' cure, some cancers respond much better than others, but to me, because of the very low side affects and huge potential it's worth a go.

    Ironically I'm from Newcastle. ;-) "

    Now I am going to start a thread on NDV because I truly believe it can help SOME people here, and we don't inject our son with it for fun.
  • peterz54
    peterz54 Member Posts: 341
    #7
    gcmaf & cancer

    I haven't digested any of this so cannot summarize, but clearly gcmaf has been a subject of research for years as it relates to cancer


    gcmaf and cancer research
  • manwithnoname
    manwithnoname Member Posts: 402
    #8
    abrub said:

    I understand the skepticism
    A few years ago, a bunch of us on the chat and the expressions were taken in by "an 18 girl with terminal lymphoma who had an infant son."

    She and her supposed family drew us in to her heartbreaking situation for several months before it was discovered that it was all a fraud; someone playing at our expense. Thus, someone who comes in with a singular agenda, which is not colorectal-related rightly raises flags for us. In this case, it points to being legit. However, once burned, twice shy.

    We, as a group, are both caring and fragile. We don't want to be toyed with, and need to protect ourselves. I'm sorry that we hurt Tony, but we were acting on instinct. I'm sure he would have done the same in a parallel situation.

    Sure
    "I'm sure he would have done the same in a parallel situation."

    If someone turned up on our brain tumour forum and I was convinced they were lying and scamming I would contact the FBI here;
    http://www.ic3.gov/default.aspx

    I know about this organisation because I was scammed of $8000 a few years ago.

    I recommended Winter to contact them.

    Anyone here who STILL thinks I am a 'kiddie cancer scammer' please contact them, but at least have the decency to NOT do it anonymously.
  • geotina
    geotina Member Posts: 2,111 Member
    #9
    manwithnoname said:

    Thanks Pete
    Doubt is a demon that's for sure, but also a useful ally.

    This is from a personal email to you on July 9th; you probably forgot, I did.


    "Yeah I read about the yoghurt, not sure if its as powerful but at least no injections, might be good for kids.
    Pete I am 100% convinced that Gc-MAF kills cancer, Im not 100% convinced about the companies making it and selling it, I mean is it the same formula as Yamamotos and other clinical researchers."

    I hope this clears up any doubts about me being a salesman and shill.

    also I didn't just 'appear' here this is my first post, please scroll down and read the rest;

    http://csn.cancer.org/node/241453#comment-1241417

    and from a another email on the same day;


    "I don't believe NDV is a 'total' cure, some cancers respond much better than others, but to me, because of the very low side affects and huge potential it's worth a go.

    Ironically I'm from Newcastle. ;-) "

    Now I am going to start a thread on NDV because I truly believe it can help SOME people here, and we don't inject our son with it for fun.

    Ummmmmmmm
    You have been in contact with Pete via e-mail since July 9th. Today is August 16th. Why have you now decided to join the Colorectal Cancer Board. Sorry, but I am very suspect of people who do not have colorectal cancer, are not the caregiver to someone with colorectal cancer, who come to our board, turn the place upside down, start name calling, threats of lawsuits to members, while at the same time posting their fundraising page.

    People on this board are in the fight of their life. Most are experiencing financial hardship. It is my experience each and every cancer is treated differently. Go spend some time in a chemo lab with chemo patients. You will find the breast people receive completely different chemo then lymphoma or colorectal so again I ask, what are you doing here and for what reason? You are most welcome on our board which again I reiterate is a colorectal cancer board.

    Also please keep in mind it is against the rules to dish out medical advise.

    Take care - Tina
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #10
    I would like to add...
    that I had no opinion on MWNN either way. My focus was on the spammers like LesleyBanks. I didn't ever accuse MWNN of anything, although I was pretty unhappy when he called me "naive" in the discussion about internet marketing/spamming, and when he seemed to be using gender as an insult against Winter Marie. That's what brought me into the conversation with him, and led to him sending me the link to his Facebook profile to prove his legitimacy (which can be done only so far, really, even in real life!). Having had a real-life friend and fellow cancer fighter here in Seattle who got scammed in a big way by a young woman pretending to have cancer, I tend to notice this sort of thing when it appears on the forums...MWNN didn't really get my radar going, unlike users "Hmmm" and "LesleyBanks", who I thought were pretty obviously fakes. And those kind of manipulative scammers will always get my attention when they show up! Ann

    PS And I support you, Pete, in whatever route you choose for yourself! You're a smart guy (your spelling just adds to your charm) and are obviously putting a lot of time and energy into this battle. I don't even have an opinion about gc-maf...I ONLY want to keep the forum free of duplicity and predatory marketing techniques. If the makers of Avastin suddenly showed up with their own version of LesleyBanks, I'd be all over them as well.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    #11
    peterz54 said:

    gcmaf & cancer

    I haven't digested any of this so cannot summarize, but clearly gcmaf has been a subject of research for years as it relates to cancer


    gcmaf and cancer research

    I'm reading it all out of
    I'm reading it all out of curiosity so I'll look it up since I'm not sure what gcmaf is. I'm all about the food changes, exercise and how they improve your chances by 50% and not really into alternatives yet but that may come, especially chinese medicine as that seems to historically work (in addition to good old hospital medicine bc I'm a big believer in traditional medicine working mainly because it's always worked for me and fine with those that are not, we all have our own ways). My selling point lately is brocolli sprouts, a great cancer fighter and even better on a peanut butter sandwich with 7 grain bread! Something I never thought I'd eat turned out to be delicious and a cancer fighter. I'm still working on the sugar free peanut butter (pretty gross) though as the sugar theory is still very argumentative. Not worth finding out the hard way though. Read that protein cancels out some of the insulin formed from pastas so I'm researching more on that also.(I'm trying a wheat pasta this weeked, let's see how that goes). Of course I could sell everyone some brocolli sprouts for $50 bucks a pop on a website but they'd just figure me out. It's a shame that people would be so desperate to scam people in our position. It's hard enough to just get through the day sometimes without crap like that going on.
  • peterz54
    peterz54 Member Posts: 341
    #12
    Helen321 said:

    I'm reading it all out of
    I'm reading it all out of curiosity so I'll look it up since I'm not sure what gcmaf is. I'm all about the food changes, exercise and how they improve your chances by 50% and not really into alternatives yet but that may come, especially chinese medicine as that seems to historically work (in addition to good old hospital medicine bc I'm a big believer in traditional medicine working mainly because it's always worked for me and fine with those that are not, we all have our own ways). My selling point lately is brocolli sprouts, a great cancer fighter and even better on a peanut butter sandwich with 7 grain bread! Something I never thought I'd eat turned out to be delicious and a cancer fighter. I'm still working on the sugar free peanut butter (pretty gross) though as the sugar theory is still very argumentative. Not worth finding out the hard way though. Read that protein cancels out some of the insulin formed from pastas so I'm researching more on that also.(I'm trying a wheat pasta this weeked, let's see how that goes). Of course I could sell everyone some brocolli sprouts for $50 bucks a pop on a website but they'd just figure me out. It's a shame that people would be so desperate to scam people in our position. It's hard enough to just get through the day sometimes without crap like that going on.

    sprouts etc
    a number of plant extracts are being researched and appear to be promising, but much work remains to be done. you can check yourself using PubMed or Google Scholar search tools... a few are curcumin, quercetin, genistein, EGCG (from green tea) and resveratrol. sulphoraphane may be helpful too, and is one of the chemicals in broccoli sprouts. many of these inhibit signalling pathways which promote cancer cell growth. we just don't know how much is needed and what dose and how best to deliver. one problem is getting past the digestive system into the blood. As for protein, there is some evidence that too much can increase IGF-1 to levels which can promote cancer cell growth.

    One defintion of a scammer is someone who inflates the value of their prodcut and sells it at a price well beyind what it's worth. So one could consider Genentech to be a scammer, selling little bags of Avastin at $8,000 a dose.

    anyhow, good luck on your research and evolving diet..
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #13
    annalexandria said:

    I would like to add...
    that I had no opinion on MWNN either way. My focus was on the spammers like LesleyBanks. I didn't ever accuse MWNN of anything, although I was pretty unhappy when he called me "naive" in the discussion about internet marketing/spamming, and when he seemed to be using gender as an insult against Winter Marie. That's what brought me into the conversation with him, and led to him sending me the link to his Facebook profile to prove his legitimacy (which can be done only so far, really, even in real life!). Having had a real-life friend and fellow cancer fighter here in Seattle who got scammed in a big way by a young woman pretending to have cancer, I tend to notice this sort of thing when it appears on the forums...MWNN didn't really get my radar going, unlike users "Hmmm" and "LesleyBanks", who I thought were pretty obviously fakes. And those kind of manipulative scammers will always get my attention when they show up! Ann

    PS And I support you, Pete, in whatever route you choose for yourself! You're a smart guy (your spelling just adds to your charm) and are obviously putting a lot of time and energy into this battle. I don't even have an opinion about gc-maf...I ONLY want to keep the forum free of duplicity and predatory marketing techniques. If the makers of Avastin suddenly showed up with their own version of LesleyBanks, I'd be all over them as well.

    thanks ann
    Another post is winding down, we are alive and smiling.
    I look back at our discussions and chuckle.
    I recognise my openness makes me a easy scam, part of the reason I post here so openly. That's why I love everyone here, the skeptics and dare devils. That in a sense makes us much more formidable as group than as little old Cancer bottlers struggling with the joys of our life. If we had no battles we would have mostly heaps repressed feelings and as a community nit be so civilised.

    Supporting each effectively is our best Hope.

    Thank God it's Friday and peeps post is here, I will give my gcmaf post a rest, for a week.

    Hugs,
    Pete

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