Survivors who have used only alternative treatments
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I looked at her blog as well, and it's really scary......did anyone else notice there are ads on the site?
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Oh wow, I had no idea she was copying our posts. I don't have any identifying information, and my posts are on the internet anyway, but I agree its creepy. She should ask permission.
Please, nanay, delete your copies of our posts except if we give permission. I do not give permission.
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Nanay really did post throughout the worried section telling women not to have biopsies. I can't hunt down all the posts in that section to correct them so i just started another thread flagging this. Is she doing this anywhere else?
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I agree, Nanay should get permission before using our posts on her blog. Plus, the post of mine that was used was edited!
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Britchick - well explained. There is one trial that is new, looking at Herceptin only for women older than 70 - the only one.0
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We can't do anything about the advice section of her blog -- its a big bad internet out there. But with so many women coming here, its different.
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ok- now I AM ticked off...i have kept mum about Nanay in wanting to embrace anyone due to the fear BC causes in us affected and those that love us...but to copy and paste what we have here onto a private blog with ads is plain SICK. And to say "authored by me...." no, NOT COOL NANAY...forget the fact that you have dropped your mom in regards to the "diagnosis" you list at the bottom of your posts-forget the fact that for the most part you have had defenders when you have appeared irratic (I ascribed it to a language problem)....but to take OUR WORDS AND THOUGHTS AND FEELINGS and post them...well, that is BS...so, it has dawned on me that perhaps you just have stirred the pot so to speak to incite a variety of responses so you in turn could post them for added *flavor* on your website...NOT COOL NANAY...while I respect your care for your mother (which sadly, I now even wonder if it is true) you have no right to exploit women who are FIGHTING BC......with every bit of everything we have...we are all "sistahs of a different mother" as someone so eloquently put. So, although I can't make you do anything, I can't make you add a tag to your "DIAGNOSIS" that it is your mother and not YOU who has BC, I can IGNORE you. Not with a button, not with a report- just ignore you. For people who like to incite, need an audience and a response, just like a bully. So, no more Nanay. You broke a rule that should never be broken- TRUST.
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My DH just told me that there was a US senate inquiry into the Gersen diet that proved it does not work. So, just shows you how wrong Nanay can be.
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I have been following this thread in disbelief. I, too was wondering if Nanay may be acting manic. On her blog she also advises women to not get mammograms. I do think it is certainly inapropriate that she has copied posts meant to be discussions between BC women.
She is advising women in the "found a lump" and "Birad 5 ...?" threads. These are newbies, not yet diagnosed. Should we advise them to beware of her advice? Click on her name and scroll down.
Now I am starting to feel like Junior High all over again!
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you do not have my permission to have any of my posts please
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Where is the super secret alternative forum (available only to accepted members) when you need it? Can't nanay be directed there?
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Oh puh lease... now I am rather pissed. here is a quote...
"(apple) I think amazing progress has been made in the fight against breast cancer. With every drug that is researched and we take, we learn more. apple, still alive today... and yes, dead sooner than not, because she started her fight at such a late stage. and yes, a bit concerned that misinformation spewed, can cause real harm."
HELLO... !!!!!
Nanay - please do not talk about my death in your blog.. jeez. Will you remove that immediately? I realize that i, apple, am just a name in cyber space, but I belong to other forums where my name is mentioned with the assumption that I will not be exploited.
that is REALLY super uncool. and yes, I know about the ignore function, moderators.
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to the original poster.. I am really sorry this is happening on your well-intentioned thread.
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Apple - she has really stepped over the line on that one. Bloody Hell!!!! What a horrible thing to say. I hope everyone is reporting her so we can get rid of her for good.0
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Oh apple, that is so creepy that she would contort your words...disgusting
She sent me a PM the other day which I instantly deleted...I wanted no contact
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"does nanay have bc?"
No, the person who is posting as nanay doesn't have bc and has never been diagnosed with bc. Apparently, she is just trying to inform women who have recently been diagnosed that they should not have their bc treated. And, anyone who says anything different is a mean person.
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Apple: I am so sorry. I agree, that is really uncool!
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what she has done to Apple is unforgiveable and sick.
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now i am stumped- I thought Nanay was the daughter?> But look at what I just copied from her website where she has pics of her mom ----it says the daugher is Lanie and the mother is Nanay- I think it is all a bunch of lies. I put what I lifted directly from her website in bold below:
Introduction from her daughter (Lanie):
My 60 year old mother (nanay) was diagnosed with IDC Stage IIB ER+ (90%) Her2+++ with mutated BRCA 2 genes last January 2010.I can do it.....Bilateral mastectomy with immediate reconstruction
Diagnosis: 10/17/2010, IDC, <1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2-0 -
it really bothers me that she encourages people not to have their breast cancer treated. I don't believe that at all.
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Nanay is her mother's name but she is using it as her username here.
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MsBliss,
You said:
With regard to Adjuvant Online, I stopped putting my faith in that data. I learned that for my risk category, the number was based on 27 cases. Further to that, the numbers are not absolute measurement, they are relative. A data pool based on 1 case out of a hundred, which with a certain chemo drug therapy becomes 2 cases out of 100 is given a percentage of effectiveness of 50 percent. Ugh.
That does not sound correct to me at all. This journal article explains how Adjuvant Online was developed.
http://jco.ascopubs.org/content/19/4/980.full
It included population data and data from clinical trials and has continually been refined. There's no way any results in there were based on just 27 cases.
Also, Adjuvant reports data in terms of "X out of 100". It does not report percentage changes (perhaps your onc reported it to you that way?)
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Nanay.. I have copied the BCO rules below. I totally give BCO 'rights' to anything I write in these forums but not you. Again, remove all mention of my name and impending death from your blog. I would Bold the parts of the rules that I think you violate, but that would waste too much ink.
(natural girls.. I totally believe in Alternative, Complementary and Holistic Treatment.. I am sorry if I am causing any distress here).
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I`ve just been following this thread out of interest. But I have to step in to say that using people`s words without permission and/or out of context is so very wrong. I know the Internet is open for all to see, but there are some general rules of decorum, fair play, and simple common sense that must be followed.
Re advice -- it`s tricky, but if someone asks for advice I will share my experiences, what worked/didn`t work for me (and why if I can) as it is relevant to the person asking. I try to only state my humble opinion and experience with BC; not do this! do that! I have strong opinions but am trying not to be too overbearing - comes with practice. Pontificating on what one should/must do and then say, well, I`m not an expert... It`s confusing and in the worst case devious.
My apologies to WOM for interrupting your thread. And warmest wishes to you and your family.
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I read the blog post, but not all of the blog posts. I think nanay's daughter might be having some serious anxiety about her mother's condition. Perhaps, her mother is a stoic. Maybe things aren't going well. But hard to say?
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Nanay, your intentional theft, insensitivity, and cruelty are beyond belief. Oddly enough (or not?), we recently had another inflammatory person here threatening us that she was "archiving" all of our posts, so I suppose we shouldn't be surprised that there are low-lifes out there stealing our information to sell elsewhere. Talk about sick. I hope any and all legal action will be taken to prevent you ever making a dime from your endeavors.
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I see that Nanay just happens to have a prominent link on her site tying her with several of our other "for-profit commercial" posters here in this forum. How do people live with themselves?0
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Did you ladies enjoy beating up nanay? You are on a roll. You all are without fault? Let the person without sin cast the first stone. You have never said or done anything on bco that perhaps has broken a rule? I haven't kept up on this thread so I don't know all that's been said. But...it seems that the conventional calvary is out to crucify nanay. Calling people discusting, and other mean words says a lot about who you are. You can correct without bullying.
I checked out her website...I see no problem with her representing her mom since, she is her advocate. That's just being picky. I didn't really want to get involved with this thread, but I have a hard time standing back and watching someone like nanay being persecuted.
(((HUGS))) TO YOU NANAY AND WOM
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Whatever evebarry
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conventional versus alternative theraphy
Posted on April 1, 2011 by nanaymiriamAfter 270+ pages of debate in a breast cancer forum, I found that even if women from both sides disagree on so many issues (conventional, integrated or pure alternative) -they found something in common. I find it hard to read all posts and let everyone relax a bit - so that we all know we should not be fighting against each other, but rather collaborate and demand that an honest, unbiased approach to research should be done for Breast Cancer.
What we agree on
1. (MOC) all of us with BC struggle with the same questions we may never have the answers to. We can research, question and make the best decisions to treat or not to treat. There are no wrong moves in that process as each of us are as individual as our cancers are.
2. (MOC) The woman i know who has had mets for 25 years is an outlier, most women with mets fall within the 2 to 5 year range. However, the number of women living longer than that, sometimes much longer than that, with mets is growing. But I also agree with you that it is NOT acceptable. NOT good enough.
3. (Lynn) we never know whether a treatment is going to work. Then you get into the quality vs. quantity of life issue. You may do chemotherapy and become very sick and then go onto progression. If you are triple negative and go to stage 4, you may only have a few months.
4. (sam52). Actually, if you leave a tumor in the breast, with no other treatment,it frequently becomes ‘fungating', which means it breaks through the skin and becomes ulcerated and stinking. And the infection therein can kill you. (Nanay: the infection will kill you not the cancer. I am not saying not to use SURGERY at all-but to decide when is the best time to do it, and not to always say that it has to be the FIRST LINE OF DEFENSE. I agree that surgery should be done for infected area of the body - but for the smallest tumour-not showing infections am not really sure about it being the first line of defense - the 3 ladies I know who was at this stage actually had surgery in the end-and they are still alive now)
5. (LtotheK)The Tailor X trial. It will show which of the ER+ patients does well with and without chemo based on the Oncotype test, which has been a revolution in cancer care. It took what looked like a really bad situation in my case and showed that I have a swinging chance at being cancer free in 10 years. Is is 100%? Of course not. But it is a massive, aggregated database of profiled women, and I happen to look like some genetically and therefore I was able to be diagnosed differently than I would have been 15 years ago.
Doctors operate on statistics because they are, to some degree, reliable. They may not be what we want them to be-higher percentage difference in outcome with endocrine therapy, for instance, but they ARE measured. This is, from the logic standpoint, just not the same as saying "you get it or you don't". Cancermath and Adjuvant may be faulty, but they are not made from nothing. Many will argue them, but the are the foundation for every one of our oncologist's approach to our treatment.
5. (MOC) I see FAR more fundraising for breast cancer than any other disease. I'm not going to disagree with the idea that the organizations have become rich and pompous, but geez, they are still out there beating the bushes.
6. (MOC) Finally, i can get frustrated with Big Pharma and the profit motive too but I truly don't buy that they find the lack of a cure more lucrative. The company that develops the cure will reap enormous, enormous, financial benefit. A more realistic concern is that they will develop such a cure and make it prohibitively expensive7. (Athena)You die because there is cancer in your vital organs. At that time, you are no longer Stage IIB. You are Stage IV. People who die as a result of breast cancer are all stage IV. Never stage 0, 1 or 2.
(beeb) Another way to say it It's not a stage of cancer that kills you, it's the cancer itself. Stage only indicates how far along the cancer is when you catch it. (nanay: however it can only kill you when the cancer has been attached to a vital organ)
8. (sam52) The main obstacle to achieving a cure for breast cancer is that it is not one disease; the distinctions between ER+/ER-/HER2+/TN etc etc are only a part of the picture.Each individual tumor is made up of several different oncogenes, and until these are all identified and mapped, sucessful treatments will remain haphazard.Some will effect a cure, others will not.
We can but hope that this line of research will yield results in the very near future.
(beeb) This conversation made me curious about government funding for cancer, so I looked it up. Interestingly, even though breast cancer is only the third most common cancer, it gets twice as much government funding as any other cancer type - about 600 million per year. By contrast, lung cancer, which is the most common type gets about 247 million dollars per year.http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding
9. (sam52) So true....I cringe every time I see another ‘pink' offering...and the people who feel so virtuous for buying it.
And the general perception at large that perpetuates the myth that once you reach the magical 5 years you are cured. And the strange looks you get when you try to correct that falsehood, knowing that they probably think you are being paranoid and ‘negative'.
And being told that none of us knows what the future holds.....why, a bus might be on the horizon.......
Sorry, I digress.....but maybe we really do all need to get angry and kick up a storm to get the appropriate attention that breast cancer research requires.
9. (sam52) But, you're all right. We need a cure. And I feel science is probably getting close, now that we have the ability to observe genes within cancer cells and understand how they operate. The emergence of "targeted" therapies like Herceptin, Gleevec....all bode well. I think we'll have a cure for cancer this century, though probably too late (in more ways than one) for all of us. I don't know how to speed up the process.
10. (Annew) No, that lump alone will not kill you. It's what happens to the cells that have already gone rogue and run off the nodes or the blood stream. (Nanay: exactly the same meaning of what Athena, sam52 we are talking about-I don't understand why so sound like all 3 of you are arguing when you all mean the same thing)
(apple) I think amazing progress has been made in the fight against breast cancer. With every drug that is researched and we take, we learn more.
apple, still alive today... and yes, dead sooner than not, because she started her fight at such a late stage. and yes, a bit concerned that misinformation spewed, can cause real harm.
Those who have the opportunity to sley this beast should.... by whatever means.
11. (Sheila)We could have avoided this by not abusing antibiotics in animal feed and for the common cold. I'd like to know of one illness that is curable other than infections (that anti-biotics, anti-fungals or anti-virals can cure). Surgery can cure many things, and in some rare cancers or early cancers we can cure them. (Nanay: I agree that surgery can cure many things like an infection- but it should not always be the first line of defense for all cancers-it should be a selective process). Vaccines prevent many serious illnesses but mostly cannot cure them once infection has set in.
Asthma, diabetes, arthritis, the common cold, skin conditions, malaria, Aids... The list is huge. We can treat them but not cure them so they remain at some level or return again.my few cents worth:am so tired of reading all the arguments here.. I just would like to end my time here to say that although am not purely convinced to go conventional for my mother and honestly not 100% convinced that my mother will live a longer life because of alternative theraphy (100% agreeing that she have better quality of life with alternative approach)...
I TRULY BELIEVE that there are so MANY THINGS THAT WE AGREE ON, despite of all the things we disagree on- these points that we agree on are very important for us to take ACTION together- to DEMAND for honest, unbiased research on both conventional and alternative approach and that diagnostic tests/treatments be made affordable for everyone..
whilst everyone agree that my mother's cancer is agressive based on her diagnosis. Most people who see her everyday, would not believe their eyes, as she really look healthy.. its actually one of the issues am facing now with the Singapore immigration because I cannot justify why she need to stay longer with me here in Singapore.
its fine to be suspicious ive been suspicious too..anyway, there are really things that we cannot possibly explain due to lack of clinical studies in cases such as my mother's case
if I did not see my mother getting well even better prior to being diagnosed, I would have been skeptical, but she really had remarkably improved well being.. she can sleep well now, her liver spots are gone, skin more supple, arthritis gone, her mood swings gone (oh really good for me- coz I am her favorite target for her mood swings)..
I am glad I did not make the decision for her.. she did,, I just supported it.. and at nights when just like you I cannot make terms with that decision, I probed deeper and asked and probed some more.. until I have thought this is enough... and probably a coincidence ive seen that remarkable improvement in her well being...
then I stopped all the crazy late night research finding everythign to support her decision.. for whatever its worth, we have had the best year so far, the best year in all of my 36 years on earth
we dont have to deal with nausea, hair fall and other SE of chemo & rads. and now am convinced we could have prevented her ordeal during and after surgery".
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Representing her Mom isn`t the problem. It`s her using other people`s posts without the decency of asking for permission.
And goody Eve -- you don`t seem to mind people using others` words without permission. So you`d agree to someone taking your words out of context and promoting their ideas that may be contrary to yours on a blog, say, that doesn`t like alternative therapies or is super-pro chemo. How generous of you!!
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