Survivors who have used only alternative treatments
Comments
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I've been following this thread for quite some time. And I swore I would not post since Nanay had felt insulted on another thread. I even PM'd her to ask her why she felt picked on etc. I saw it as maybe a language barrier type misunderstanding. This however...is too much.
From what I have seen on this and another thread Nanay has chosen to be the victim. I feel bad for those who think she is being picked on. I cant believe that anyone would come to her defense after what she posted about Apple. I have never seen anything so horrfic on this site in the 4 years I have been here. I can not believe that the ladies on this thread are being accused of casting the first stone??? You have got to be kidding me. Apple is a deeply caring lady and I am shocked that somehow what Nanay said about Apple was turned around to be everyone elses fault. I have never heard one person on this site so much as to even pretend to be perfect. Its an insult to Apple to defend Nanay for the horrific remark. Cast the first stone indeed....it was cast from the hand of Nanay when she posted that.
Apple...I'm sorry she posted that to you. You so do not deserve that nor does anyone else. Luv and hugs to you, Mazy
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Thank-you Nanay for making some of the changes on your blog.
Unfortunately Google still picked up a quote I tried (minus the poster's name). The #1 search result was a link to this thread. It is #3 to Nanay's blog. I don't think privacy is preserved at all as long as original words are used. This can so easily be resolved.
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I am sorry if I have overstepped the mark with my comments to everyone and to Nannay...bit tired with treatment...
I was just so shocked at the blogg it is bordering on commercial use aimed at a large audience, what ever the motives are, let's hope it is for the good...
Breast cancer is horrible, I find it all very upsetting that we're all arguing now as i like talking to u all!! On that note I'm doing the same as nerida and going for a nice cup of tea!!!
Love xxxx0 -
I do not think it helps to call nanay evil but I don't think she understands -- or cares -- how hurtful she has been, or how much distress she is causing here. I'm not sure she's really in control. I also think she's not getting the fact that there are more visits to her blog, something she seems to be interpreting as a good thing, only because so many of us are upset and want to see how she's using our words. I think we should stop going to her blog.
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Nanay,
I'm so sorry you have been abused by the Lord of the Flies treatment you received on this thread. The bullying and censoring is over the top. Please don't let a vocal gang discourage you. I'm glad you are thick skinned!
There are some who get very excited and upset themselves when they hear information inconsistent with what they have been taught.
Good luck with your blog.
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Once again, no one is upset with Nanay for presenting information that is inconsistent with what they have been taught.
Nanay copied comments on here made by others and put them on her blog, along with some hurtful edits of her own. No one should be defending this.
BTW- Nanay is now Ruth_in_Singapore
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Yes, molly-- I changed my nick to Ruth_in_singapore -- the reason for changing nick is in my profile.. I think I cannot stop people from calling me evil-- but perhaps you can spare my term of endearment for my mother-- I call her nanay.
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mathteacher,
thanks! a few people have been kind enough to let me know what was going on here when I was away.. I was also been properly corrected by them via Private Messages.
I am waiting for Judith (moderators) response on deleting some of the posts telling me that "nanay is evil" -- my request is either delete those posts or edit it to read "ruth is evil".
at least that will move away from my mother being called names because of this.
apple,
if you are reading this and probably have missed my flury of apologies.. I would like to apologise again. We have shared some good times albeit virtually in this thread.. I am sorry, I did not see your posts as I was still sleeping at that time..
you see it was not meant to personally attack you-- it was a general blog entry not meant to hurt you but for us to see that despite our differences we have some similarities..
tell me what you want me to do with that blog entry-- I have already removed the nicknames and references to this thread..
do you want me to delete specifically the quote on item #11?
or just reword the blog entry using my own words instead-- in summary format??
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mollynminnie,
When you post on the Internet, your information is forever. Unless you have copyrighted the post or can prove theft of intellectual property, you cannot have your post removed from public scrutiny. There is no privacy on bcorg. Tho, bcorg allows you to delete your own posts. Google mollynminnie breastcancer.org and you will see there is a very public track back to everthing you've written.
I believe bc.org claims full copyright of all posts under their Terms of Service. Bloggers are considered journalists and can report on your posts and comment any way they choose. Whenever people talk about Nanay as if she isn't "in the room" or objectify or defame her, they can expect to suffer blow-back. Maybe not today or tomorrow, but the Lord of the Flies mentality is well-documented here and can come back to bite.
The internet is not for the thin-skinned.
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hi mathteacher,
my concern right now is apple..
I am not a health professional so take everything I say as opinion and not fact. Consult your health professional for medical advice.
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Oh,Nanay.....alias whatever you choose to call yourself when you feel like it ....
'my concern right now is apple' - really? How very empathetic of you - yet you were not thinking of apple when you posted your hurtful and insensitive and downright disgusting words. I don't think you have even alluded to that yet.You have not aplologised for those words and the pain you have caused her.And unfortunately you can't unsay words once you have said them.
You purport to be trying to help your mother......I have been in that very position with my own mother - but would never have dreamt of going about things in that way.You expect respect from us here when you show no respect at all.
For what it's worth, I think you are nuts. Sorry, it had to be said.
PS..the spelling is therapy
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apple and all,
I am off now as it is 12mn my time. I have sent you a PM.
MOC, thenewme,
you dont have to waste your time watching all BCO threads for either nanay or ruth_in_singapore at least for the next 12 hours..
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Ruth, I'm glad you finally changed your name. It was the height of absurdity for me, what with people attacking their mothers in every other post.
Let me act as an intercultural interpreter and tell everyone that privacy in the Philippines is about covering body parts. Other definitions are probably non-existent unless you are a banker by profession. The cultural and social disconnect in this thread was so evident to me, as one who straddles both worlds. I was glad for people like Sheila who were brave enough to step in and restore some civility in the thread and who also tried to understand the undercurrents of Ruth's life. I am almost positive that no one posting here has walked in her shoes. Ok, maybe I have in a quarter of one shoe since we were born in the same city.
I did pat Ruth in the back early in the thread, as MOC said, even though I can't say the alt way is best as I only did conventional. I respect anyone's choice, but I thought it was even more important for me to give my support, something I knew growing up but often forgot, and learned again in the stage iv forum here. And objectively speaking, Ruth's mother did make an almost miraculous recovery if i compare it to the long, hard haul mine was. I am certainly looking at alt/cam treatments now with different eyes.0 -
Nanay/Ruth violated this sacred ground. Period. It's been described eloquently by many women here how she did, so no need to reinvent that wheel.
She should be banned, and moderators, if you're reading this, you should be ASHAMED of yourselves if you don't ban her.
Nanay/Ruth: you do not have my permission to re-post anything I have said here on your blog, now, or ever.
In the end, this hasn't turned into a debate of "conventional" vs. "alternative". This is about respect and decency.
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HeidiHill,
The problem was not with the choices of alternate versus conventional treatments. It started when Ruth was posting long posts one after the other, giving advice as if she was a medical professional, and then she copied BCO members posts to her web site, complete with member handles and a link to this forum, and "edited" them to prove her advice was agreed upon by those on this website. She indicates on her website that what is posted on this forum is "authored by me (meaning herself)". It is very misleading. When she was asked to please remove the copied posts - she insisted that she could not remove them.
I believe we all want to have "control" over this disease. I know for myself, I researched and bought the "best" juicer I could find, I searched local markets for "sour sop", and other alternatives that I had found. I just plan wanted some control back. Yes, I have changed my diet and lifestyle - in a healthy way (I hope).
There is a place for Alternative therapies. And it should be the patient's choice - without being confused and flooded with inaccurate and/or twisted information. If the information is sound, it will stand on it's own and doesn't need verification by "editing" others comments to back up the point. Some have had much success on these therapies.
There is also some very dangerous information being published on the internet. The patient must be knowledgable and be able to sort out the "wheat from the chaff"; and be given the right to choose.
Most of us come here to have a safe place to discuss BC, treatments, issues, etc. It is alarming to think that our comments can be "edited" and posted to another website (complete with our user information) linking back to here as if that website designer is the "author" of the information here.
We are only safe as long as we trust each other (scary I know, with cyber friends). This may be a cultural issue, as you say. But I don't believe for one second, that in any culture it is "OK" to edit and twist and post to the world information in this way.
My thoughts and prayers are for WornOutMom, who came here, I believe, hoping to find accurate information and to get some choices and control over her diagnosis. And any others who have come and witnessed this behavior.
I agree, that many have posted strong posts, we are hurt and violated, and this is a very emotional issue. But to say that this was done because of cultural differences and is to be accepted? I disagree. (and in a way, I wish the moderators would remove all replies to the original poster - and have this discussion begin anew with her original question.)
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FYI:
When creating a Web page, you CAN:
* Link to other Web sites. [However, some individuals and organizations have specific requirements when you link to their Web material. Check a site carefully to find such restrictions. It is wise to ask permission. You need to cite source, as you are required to do in a research paper, when quoting or paraphrasing material from other sources. How much you quote is limited.]
* Use free graphics on your Web page. If the graphics are not advertised as "free" they should not be copied without permission.
When creating a Web page, you CANNOT:
* Put the contents of another person's or organizations web site on your Web page
* Copy and paste information together from various Internet sources to create "your own" document. [You CAN quote or paraphrase limited amounts, if you give credit to the original source and the location of the source. This same principle applies to print sources, of course.]
* Incorporate other people's electronic material, such as e-mail, in your own document, without permission.
* Forward someone's e-mail to another recipient without permission
* Change the context of or edit someone else's digital correspondence in a way which changes the meaning
* Copy and paste others' lists of resources on your own web page
* Copy and paste logos, icons, and other graphics from other web sites to your web page (unless it is clearly advertised as "freeware." Shareware is not free). Some organizations are happy to let you use their logos, with permission - it is free advertising. But they want to know who is using it. They might not approve of all sites who want to use their logo.http://mason.gmu.edu/~montecin/copyright-internet.htm
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WOM:It appears you have created a passionate response from your questions! I'm not sure whether is laughable or something to cry over! I have found throughout this entire site, when alt vs conv gets discussed it's always ferocious and rarely docile. I keep scanning the posts to get some insight and guidance for my own research on alternative methods/supplements/diets, and yet it's so hard to find amongst the many arguments.
To everyone that is "involved in the argument": I think the basis of all of this is that it plays on our fears. Fear that we made the right choice for ourselves with the right treatment. Fear of recurrence. Fear of being exposed for our opinions. Fear of losing someone we love. So much of what we face has fear with it. Since this diagnosis, I feel that so much of my life has been dedicated to this cycle of "fear of future pain." Have I made the choices that brought me the least pain with the most success or the other way around? I think being angry in response to these fears has become a way of life for most of us. We are at war every day with something we can't see. There's so much truth to being called a "Warrior" instead of a "Survivor". I think it's admirable that you all circled the wagons to protect one/many of our own. But remember, on the other side of those wagons, someone else is fearful and in pain too. And I think we all make mistakes when faced with fear and pain.
Can I make a plea that we find a way to agree to disagree and move on to the topic at the top of the thread?
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Just FYI i had googled my screen name+'cancer' a while back and pretty much my posts were on the lovely world wide web for everyone to see so no ones posts are really private here.
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speaking for only myself, Girlfriday, you are mistaken. this is not about conflicting philosophies --though it started out that way, certainly-- and I don't think it's centered in fear, either. yes, we all have multiple fears, which you described, but that is not the crux of this.
if you've read the previous pages, then you know about Nanay's actions re: our posts and her blog, not to mention possibly dangerous medical advice distributed to others. That is the crux of it all. Wornoutmom's question, unfortunately, did get lost along the way.
I agree with your plea to move on from this. Perhaps a new thread should be started?
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I have not followed this thread. I knew when it was posted it would become a toxic topic. WOM was looking for women who chose alternative therapy...not to battle over if it was right or not. I think she feels bad that such a battle has broken out.
But...when I saw nanay/ruth being cyber flogged and shunned, I knew that I could not say anything. Yes...I feel bad for apple. I feel bad for nanay/ruth. I feel bad that people are ready to cut nanay/ruth throat. I am shocked that people are so unforgiving.
We all have blind sides. We've all done and said things that we regret. I am glad that everything I thought and said in life isn't on cyberspace...my goodness, I would be stoned.
Again...let's private message one another with corrections we need to make..If the person doesn't change then talk to the modirators...this is their job...to discipline, not ours.
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elmcity69: Should we call it Alternative vs Conventional: Please share your tx and your experience...If you're going to be judgemental, stupid, or mean, please go elsewhere?
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Girls - ThatGirl started a new thread for people who only used Alternative. No one has answered yet - just like on this one.
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evebarry~
"We've all done and said things that we regret."
True. But I feel she stepped over the line.
Truly hostile threads should be deleted, IMO.
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Girlfriday:
I'm neither stupid, nor mean, nor judgemental.
As far as my treatment and decisions, you can research my posts. No point in explaining my journey in the face of such rudeness.
Lastly: I reported your post. I don't namecall, and I don't tolerate such in return.
Janyce
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Yes, WOM was looking for anyone who has done the alternative approach with the same diagnosis, I was all for hearing from these people...The topic IMO is not toxic, Maybe the interpertation is..but not the topic.
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Bare with me here we I am behind as I had 2 sick kids with stomach flu and to add to it I was sick..lol Not good when all are sick at the same time
Seems lots of drama has happened. I am confused on the attack on Apple. I believe the issue is the quote dead sooner than not. Now please understand I have not read the blog but did read a post by apple with those words on page 25 so am thinking this was just quoting her words rather than saying some mean thing towards apple regarding death. Could this be the cause of the confusion. Poor apple so sorry this tread has caused you any hurt.
So if this was the case and please know I haven't read her blog than the real issue would be copy and pasting peoples words. I am guessing this is her way of sorting out the pain. She has taken on heat here so this may be why this dicussion is in her blog. All of which she has appologized and I am wondering what else we can really ask her to do? It seems like some are just out to drag on the raking over the coals for her. Once the thread moves back on someone starts in with we must do more to her. She has applogized and removed names. I think at this point those involved should let one another know if they feel more needs to be done to correct the wrongs. Anger and ugliness will do none of here any good as we are all healing and this should be a place of confort for all of us in this bumpy journey.
I can tell you in my research for terms I have had BCorg forums come up so it is not private at all. This is how I found this site. So we should all be aware that our posts can be read, googled, and are public.
My orginal question with regards to herceptin. I understand that herceptin is given with the chemos as according to my onc it is not effective without the chemo. As bascially it makes the chemo effective for her2. So if it is ineffective to treat it alone why then would I have to continue to use it once the chemo is done is my real question as this contradicts the fact they tell me it doesn't work without the chemo?? My onc did say tests on 2 years have been done and there is no further benefit to have it longer. The 12 month reccomendation was a time period used by trials so that is where we are reccommend 12 months. My concern is that I would be having months more than needed as it sounds like the smaller trials are good. Anyone have information/studies on herceptin not working alone?
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WOM - they are doing a study on herceptin alone in olderwomen - over 70. The 12 months of herceptin is what the standard treament is. We will eventually see the results of the finHer trial which is testing 9 weeks. I, for one, would prefer too much rather than not enough. Once the chemo is over, the 3 weekly herceptin is a breeze - no SE's except for maybe a slight runny nose. The time actually goes really quickly. Someone else explained earlier why they give it with chemo to start with - if you can find it amongst all of the other posts.
Sorry you've got sick kids - hope they're better soon and you too.
Sue
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WOM- I echo suepen here in saying sorry about the sick kiddos....that is no fun when even when feeling great- hope you are holding up ok-remember to take a rest here and there when you can...big hug
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I have been reading this thread with interest in the hope of hearing from survivors who have done alternative treatments successfully so that I may learn from their experiences.
I would just like to share that I had found the following information by googling, so I'm merely posting this information from google for everyone's own perusal and to form his/her own conclusion/learning. I have no other intention.
1) blog (link below) on Gerson Diet
http://sheilamiller31.wordpress.com/about/
2) I had read there is a lady here in BCO by the name of chillipadi who had done the Budwig protocol. You may check against the member's listing and read her posts in the Fungal Theory.
Please do not flame me as I must state that these alternative therapies had not worked for these ladies, ie these are not successful cases as there was progression while they were on these protocols. Maybe it's my poor googling skills, I have, unfortunately, not yet found any successful case/blogs from my googling.
WOM
There is this website called www.her2 support.org. There are ladies who had been on her2 for more than 1 year as maintenance. For some, their cancer came back after they decided to stop herceptin after being on herceptin for 4 years or more. So they had to go back to herceptin again. This is how aggressive her2+ cancer is. Again, I'm merely reporting what I have read by googling. Please form your own conclusions.
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Here's more information, from here on Breastcancer.org:
Herceptin (How it works. Will it work for you? What to expect. Side effects)
What to Know About Diets That Claim to Cure Cancer
Judith and the BCO team
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