Survivors who have used only alternative treatments
Comments
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And it really is WOM's perogative on whether or not she wants to post her info. I was being very grumpy before. I realize that this is the Interweb and once it's out there, you can't really get it back. So I get why she would be cautious on putting up something that might be traceable back to her. I hope that she eventually posts.
I would like to go to the Block Center in IL and the Insitute for Integrative Medicine in Pittsburgh to get second and third opinions on my strategy - see if there is anything that I can tweak.
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Alternative protocols are not miracle treatments, they involve intricate individualized choices that cover all bases plus a lifestyle change that works for the individual.
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Sweatbean: I was a marathon runner when I got cancer in 1982. After my mastectomy/reconstruction with 17 nodes removed, I had to stay in the hospital 5 days so began walking around the floor I was on. One lap was a 16th of a mile the nurses told me. So I walked, and walked and walked every single day. After the drain was out (3 weeks later I was finally allowed to run again.
I think because of all this exercising I never did get lymphedema. Of course it wasn't even discussed as a possibility in those days.
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I agree with DianeEssa, there is no miracle treatment and WOM is not claiming one.
She is only saying that an individualized tx has been working for her. Why are we so intent on tearing each other down if someone follows a different path or reacts differently than someone else might? Caryn0 -
WOM, nobody asked for your name. People also said that they are not really interested in the name of the clinic, but they are interested in knowing what your therapies are.
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WOM is not the first BC patient to use IPT and have success. There are many testimonials out there. I provided a link on the previous page to a list of MDs all over the world who offer IPT . Anyone who is really interested can do their own research and see if it right for them.
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One of my favorite slogans is 'trust but verify.' Another one I like is 'talk is cheap.'
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"Don't ask the doctor, ask the patient."
-Yiddish proverb
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WOM, you are right. Some people here have been very cruel to you and others. Did you ever get an apology from the Australian who posted that you died from alternatives?
We wish you well. I'm sure you are a good judge of character and will know with whom you can share via PM.
Continued blessings to you and your family.
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Patty - No one ever said WOM died
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Susie, so you never apologised for taunting Wornoutmom?
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WOM, thanks for taking the time to message me I know it's hard with a family I have three girls. I'm going to look into taking large amounts of vitamin C when I finish my chemo which is May 4th. A friend of mine has cancer and since taking it he has got his energy back it hasn't helped his cancer but made him feel so much better. I do believe when you have energy, hope and will power it all helps in the fight against cancer.
I think people should be very careful when posting about what they are taking and doing this is very dangerous. What if someone stopped their treatment because they thought something else was better and it was wrong for them.
WOM you are doing the right thing in being careful what you say, when you have spoken to your doctor he will tell you if you can safely tell people.
Good luck to everyone on here and please be kind to other's, we all want the same thing to be cancer free.0 -
I've been following this thread fairly closely and I've not seen anyone post that WOM would die from alternative treatment.
I would love to hit my Stage IV HER2+ cancer with all the ammunition that there is, both conventional and alternative. So I too would love to know WOM's clinic name, but if she'd rather not, I'll have to respect her choice. Though I'll admit it is frustrating to have heard that this treatment is doing well for WOM and I do not have a clue as to what clinic it is.
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Susie, on Dec 20th on "Why I'm Not Doing Chemo" page 11, you said:
"I care a great deal as I cared about wornoutmom - look what happened to her."
Then on Feb 16th on "Is it possible to post negative Alt experience?" page 1,
"Yes, I will push anyone with an HER2+ve dx to not do alternative - most of us know what happened to wornoutmom."
These statements are both in the past tense, so either implying that WOM was no longer around or you no longer cared. As WOM was not posting there was no way for you to know what had happened to her, and revealing personal details not published on BCO is against the rules.
Any one of us could get a negative test at any time and find we are stage IV, no matter what treatments we had. They deserve our full sympathy and to be treated kindly, just as you are so kind to your friends on the friendship threads, and they will be to you should you ever be unfortunate and hear bad news. There's nothing 'private' about the friendship thread which is easily found on the Forum Index or by simply clicking on your name and looking at your last messages. So please extend the same courtesies to WOM and all of the alternative people as you would to any of your friends, no matter what thread you are on.
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Just saying that susie is negative and mean.
I'm so tired of drug pushing women! I need a real natural support group. Is this a NATURAL support forum, or not?
Moderators, please stop the drug pushers from posting negative, UNSUPPORTIVE posts in this forum.
I'm angry that I was conned into getting a biopsy. When they cut into cancer they SPREAD it. We who have cancer that spread into our nodes or bodies need to sue the BC system. They are not here to get us well.
This is another good video on the Rockefeller drug trust, cut, slash and burn corrupt system.
http://www.youtube.com/watch?v=IWkqSncY3fg&feature=player_embedded#! Stay strong natural women. We are healing ourselves and helping the world learn the truth.
XO
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Why isn't there a way to report antagonistic, hurtful posts in this forum?
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Joy - another poster had revealed that WOM had progressed to Stage IV - that's what I was talking about. I was very upset to hear that because I really did care and will continue to encourage anyone with HER2+ve bc to take the offered treatment.
not - I think you need to learn what the rules are here - you're the one who is contravening them.
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I've been thinking about the right or obligation to disclose, and can see it's a similar situation to all the trials that are taking place all the time. The results might show a vast improvement, but nothing gets said or published till all the time consuming protocol has been completed and approval given, which could be years where many are dying without that new drug. We must decide as a society, whether we wish to go ahead with treatments before they are fully proven, such as we do with alternatives, or wait in ignorance.
There was a news item yesterday about a new Melanoma drug, a monoclonal antibody similar to Herceptin that can have severe side effects, but for a minority, around 10%, they are NED years later, and for some others they gain months or years of life. In Australia it has again been turned down for refund, so those who know about it can get it for $120,000 out of their own pocket, but the chief complaint is that oncologists don't even mention it. Patients can have limited ineffective treatments then their options run out quickly.
So here is some information that can save a patient's life, at a financial cost. This is not a personal disclosure, but a public one. But if disclosing information is personal, and the information regarding Alternative clinics is very public, then there is no onus on anyone to disclose where they are getting treatment.
As we are constantly being dissuaded by various conventional forum members to stop encouraging others to use alternatives, it seems most odd that suddenly we are requested to do the opposite, by disclosing our treatments and where we got them. Perhaps someone can explain this anomaly to me in a way that is not personally insulting to any individual, rather as an impersonal debate? Do we disclose, or just revert to conventional treatments that are bound to fail Stage IV's and ignore potentially life saving alternatives?
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I guess if Not is breaking rules for calling you mean, then so are you Susie for calling WOM mean simply because she withheld personal information. Which is it? Is 'mean' sufficiently bad for us to delete your message to WOM?
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I am really pleased to hear Wornoutmom is getting a treatment that is working - really pleased. She doesn't have to reveal where she is getting the treatment, it's just that it could bring so much hope to others, it would be nice if she did.
not - I'm not at all a mean person. I too had HER2+ve bc, I know how life threatening it is OK? I also know how successful the chemo/herceptin can be - proven by trials, so why wouldn't I want to share that knowledge, no matter which forum I do that on. I'm not the only one who posts here who has been in the same situation and who also supports the traditional treatment plus complementary options that can be followed.
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Joy - I have altered my post, I did not intend to say that WOM was mean in anyway. I also didn't cause not's post to be removed - obviously others thought it was against the rules.
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Thank you Susie, your contribution to this thread could be really helpful. I'm sure you understand now how easy it is to slip up and say the wrong thing.
Not, perhaps you can take out any mean or insulting words or expressions too.
ETA, too late. There's a pattern of behaviour here that is disturbing and I shan't let it pass without bringing it to light. Too many women have left BCO due to carefully worded harassment. I guess the ignore button is one answer, but it's not easy to ignore what could be Libel. We have a right to know if anyone is making damaging comments about us.
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Susie, you bring up the dilemma of whether it is ethical to pass on, repeat or refer to information about a BCO member that another has revealed since it is hearsay. If the member has not revealed it or given others permission to, then I'd be reluctant to repeat that information. I had no idea about WOM's situation till recently. Maybe the moderators could comment.0
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It was written here publicly - I was not breaching any confidence. How about giving me a break here, if you want to criticise, how about doing it privately.
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Here's the quote by Evebarry, maybe you should admonish her for revealing private information:
"Digger, and a few others may not realize that wornoutmom was on conventional treatment when she posted here. She was then looking into alternative treatment. It was after being dx with stage IV that she went to this alternative cancer center where she has found help, and her numbers are dropping, which is good. She is doing great, and I sense a lot of hope in her voice"
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Susie, I'm not admonishing anyone. Please accept my apologies if it came across that way. I wanted to know what the rules were. I even thanked you and encouraged helpful contributions. Evebarry may have had permission, or you may have had permission. As the criticisms of WOM and others by several people is very public and my previous request to you on another thread was not acted on, I can't see that my public appeals are any different to the public criticism's of WOM who is a woman dealing apparently with stage IV and young children. Most of us hurt when we are criticized whether privately of publicly. Yet many on BCO have continued to harass alternative minded people. I have already started a separate thread about this as it deserves to be addressed before any more stage IV alternative women leave this support forum as many already have.
I have purposely brought this issue to the fore as politely and respectfully as I can to deter others from being critical on the alternative forum as this has been happening for years and was one reason I took a break for several months. I came back on provision that I stood up for the women who just want to get help and support here. It cannot continue.
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Yikes. Let me just go on the record apologizing for saying that WOM was being mean for withholding information. I already apologized to her in a PM. I was having a rough day and kind of desperate for any information and I reacted badly. I'm very sorry. I hope that she eventually lets us know what is working for her - I think that will be a great service.
That being said, I have never found Susie's posts to be harassment - she always comes across as genuinely concerned for everyone here, even if she disagrees with them.
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Sigh..I'm so sorry to learn about this
This is why I want to throw everything at HER2+..even the kitchen sink I never thought WOM to be mean in wanting to retain her privacy as I truly value mine too. Sigh, it's a sad moment for me..
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LOL, thanks for the Yikes Sweetbean. It made me laugh.
It's the women who are feeling harassed who can say how they feel and it's clear that some are upset. It's several posters being critical so let's not point fingers. Anyway, maybe we can move this discussion to my new thread and leave this free for WOM in case she decides to come back as she was not sounding too happy about all the controversy last time she posted.
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Well handled Joy! I will be right over to your new thread. Can you post the link here for others to find easier.
My Hubby just said, "I thought this was supposed to be women helping women (and men) on this."
He knows how worn out I am and the stress it has caused me, not so much from this thread as the several others that I have been involved with too.
In the last two weeks I lost three good like-minded friends who stopped posting on bco. I am sad. And two other women also said, I am out of here, and really left.
I will not point fingers, but the 'they're all dead' statements get old quick. Go back through this thread page by page, really, it was a literal bash-fest.
On to the other thread, it should be popular.
I will not post another debate on here. My word is smoke. Smoke. Period.
This thread will thrive.
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