Survivors who have used only alternative treatments
Comments
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Comment on disclosure.
I watch Veria Living on cable. The clinics on there have all run into issues with the FDA and been in danger of being shut down. While people were flourishing underthe physician's caare and their cancer was gone or going..... the drug or treatment or doctor was kept from them in some way.
Usually the means to stop the clinic or physician is through a child being takken there for treatment by parents who love them and arre doing their best to keep him alive and not exposed to further cancer-causing drugs. Then the clinic is under fire, as well as the parents.
Our clinics must be protected. Our alternative doctors must be protected. Yes, we must tread carefully. but.....
As citizens, we have the right to choose what we want to do with our own bodies. Yes, it can go terribly wrong. Sure, it may not work at all. But we have the right to decide.
This thread did not say WOM only used alternatives, she started it to find others who were using ONLY alternatives.
What we find in the end is that, from my reading all the thread, that we end up with integrative treatments - thus alternative and conventional used in unconventional ways, thus being complementary. Cool, huh?
Diane
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JLW, of course ALL of us will rally round any sister who progresses. We KNOW it could happen to any of us in a heart beat. But HAS WOM progressed? It's impossible to be sympathetic when all we hear about her becoming Stage IV is second hand. Her profile still says she is Stage III. If she is keeping this secret I can completely understand, but don't ask for our support when she is not discussing her progression. Can't have it both ways
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Diane, just a comment about alternative centers and children. I agree that adults should have the right to decide what to do with their own bodies. However children cannot make informed decisions about their bodies. They are dependent on their parents for this. I completely understand when the government steps in to protect children from non-standard types of treatment which could potentially be lethal. Christian Science parents are prosecuted all the time when their children die from attempted faith healings. Children being treated in this manner who are still alive are removed from the parents' custody so they can get proper medical help. I KNOW these parents feel they are doing the right thing by their children, but in the eyes of the law, and I have to admit my own, these parents are committing child abuse and their children's lives are at risk. I believe the same argument can be made for alternative treatments children with life threatening diseases are subjected to by parents.
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Stage IV's Using Alternatives Deserve our Respect and Admiration
Diane, Just click on the Alternative Medicine link at the top of the page and look for the above title. Thanks for confirming that women are leaving these threads. That's the real measure of whether remarks are being taken as harassment.
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Since my name was pulled into this I wil respond. I vaguely recall responding to a question to what happen to WOM ... I would have to go back to read the thread to know why I posted what I did.
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"
I copy this from the above post...I suppose to digger?
I know that WOM liver tumors have disappeared due to the alternative therapy. It was my intent to say alternative therapy was and is working for WOM ... even though she is stage IV. To me it was a greater miracle she is stage IV and alternative worked. I also wanted to put to rest negative remarks made about her. I would never say or do anything to hurt WOM. She is the person I would go to for help because she's tried it and it worked.
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I am very sorry to hear that WOM has progressed to Stage IV. It's something that could happen to any of us. I am curious as to why her Diagosis says IIIa and not IV. Also, in her original post of February 2011 she says she is IIIa NOT IV. Eve, are you SURE she posted this after she progressed? Looks to me like she's was into aternative long before that.
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WOM, follow your instincts and do NOT publically reveal specifics about your treatments or any personal information on BCO. Assist only those you trust via PMs and let the rest figure it out for themselves. People fail to realize that you are not a punching bag and you do read English. Some of the comments directed at you are completely out of line.
SusieQ58,leading people to believe that someone has passed away to help justify your standard treatments is absolutely unacceptable. Have you any idea how shocked and hurt WOM must feel? Then you have the nerve to try and defame her character by calling her "mean" for not posting the name of her clinic and protecting her privacy. Also, getting your friends to delete "not's" post and trying to drag evebarry down with you only makes you look even guiltier.
I have to pose this question. Have you been asked by a Breastcancer.org sponsor to promote standard chemotherapy and Herceptin on this site? I'm probing because what you did was so extreme and uncalled for, and only a drug company representative would stoop that low. As you know, it is certainly not uncommon for influential patients to be paid generously to assertively promote standard pharmaceutical drugs on medical social media platforms. Paid patients befriend and prey on unsuspecting patients who are undecided about their treatments, and relentlessly harass those who announce they've taken an alternate treatment route. I sincerely hope this is not the case. But if it is, may god have mercy on your soul.:)
Thanks Patty G, JoyLW and evebarry for bringing the truth to our attention. I won't be returning here.
Take care of yourselves everyone and be safe,
z
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Wow. I do not think anyone was trying to "defame her character."
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I would appreciate if this thread remain civil, and really, there is no need to use susie58 as a punching bag. She did not imply WOM was no longer with us, never did as she has made abundantly clear, and there is no need to perpetuate this false rumor (unless there's something in it for whoever is continuing to claim this "lie."). Nor is there a need to jump off and try to perpetuate another lie, such as she must be working for "Big Pharma."
I'm thrilled that WOM is feeling great. More power to her.
Blessings to all and take care of yourselves.
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zuvart - you say "leading people to believe that someone has passed away to help justify your standard treatments is absolutely unacceptable"
I have never ever done that - I was speaking about her progression which was publicly written by Eve. I was devastated to read that. How was I dragging Evebarry down? She's the one who wrote what had happened to WOM, not me.
I did not get anyone to report not's post either - obviously others thought it was unacceptable.
I apologise for using the word mean and have removed it. It's just that hope could be given to so many here if she chose to share.
Sure, I get paid lots of money for promoting herceptin and chemo - not. I am merely an intelligent well researched woman, who realises the necessity to hit HER2 bc hard. It fascinates me that most of the women who are so pro alternative are not HER2+ve - it's a totally different ball game from only hormone receptive bc.
ETA - it is well known here that I am a senior software engineer who works for a big insurance company
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yorkiemom...I may have wrongly assumed she was stage IV because of her liver mets. Someone said that if you are dx with stage 1 and if it mets that you are always stage 1 that mets. I know that with her therapy that her liver tumors disappeared. She may no longer have liver cancer. I do know for sure the alternative therapy she's received is working. It is up to her to tell you exactly what's she doing and where she is going. WOM if I am wrong here please correct me.
And...WOM said she had a PET scan as proof for what??? It was proof that the alternative therapy she's receiving is working because the tumors in the liver are gone and her cancer numbers are way down.
WOM...Sorry if I said too much here on this forum...or any tread here at bco. My intent was to share that alternative therapy can work...even at advance stages.
I'm am trying, which is sometimes hard to do to stay away from bco drama. I know that the drama and stress works against our bodies. Life itself is filled with enough stress so why add more.
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Eve - did you have your next herceptin treatment yet? I hope you are feeling better.
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If you want to know about my herceptin treatments go to the HER2+ Forum threads...mostly under Herceptin side effects.
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Yes, the drama is stressful and very immature. I know bc does not always bring out the best in us, but we can, hopefully, work toward being gentlet and kinder to each other, even if we don't always agree. I also hope we can let go of some of the paranoia that crops up now and them, particularly with respect to the very silly us vs. them mindset.
Eve, hope you are doing well . If you have metasteses of bc to distant organs, bone, brain, liver lungs etc, then you become stage IV, not a lower stage with mets. Also, these mets are breast cancer even if they are in another organ. So, mets to the liver is not liver cancer but metastasized breast cancer. The exception would be if the cancer to another organ is a new primary and not a metastasis of the bc.
As to ones diagnosis in their signature line, people may not always get around to changing them as their situation changes. I know that what I stated about my condition and my signature line did not match for a while simply because I didn't change it for quite a while. Please, please let's stop picking at each other! Caryn0 -
eve, I don't understand. If one has bc progression to liver, doesn't that make them Stage IV???
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diane" years of studies? lipitor??
another couple of rest days tues afternoon to th, these arn't paint days, paint days most of week after this, & the one after that
I looked up harmaline, & for from being estrogenic it's the opposite, & availiable as a tea, passion flower leaf tea. I'm concidering it.
I intend not to anylonger respond to posters wiishing that i'd see a dr or have surgery or, & I also don't plan to post if things do go bad as joy explained thrice. so far pretty much no change at all in 3 weeks.
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Susie, I believe on rereading your posts that they can be taken either way and you didn't mean to imply what others read into it, including WOM who made it very clear that the criticism by many was upsetting and stopping her from posting. And I'm sure no one else believes you are supporting any industry, just your own personal convictions. We all like to think we made the best choices and the statistics support your view. I'm sure if I were Her2+++ I'd decide after much research to take the herceptin due to the aggressiveness. But I also respect those who make other choices. So now those misunderstandings are settled can we all please settle down?
I'm not trying to pick on anyone or make this personal, but will point out if anyone is causing distress as people are letting me know in PMs they are leaving or left the alternative section due to feeling too scared to post. Sometimes only a small criticism bites deep and several have done that recently.
As far as keeping my concerns to PMs, that doesn't let others know they may cause distress if they find fault or imply failure in our treatments in an unkind way. Also if anyone posts here in a public way then they can expect the reply to be public.
I must get ready to go out now so please all rest well tonight. We're all in this together and can join forces to make this a supportive forum.
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Oops, Abigail, sorry for repeating myself. Sometines posts move so fast it's hard to know if anything gets read. I trust your painting is going well. And of course your health.
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Yikes again. Just for the record, I was the one who started the whole "mean" thing, so if you really must yell at someone for using that word, please yell at me. I have apologized both in PM and on the thread. I was just having a rough day(s) and was frustrated and chose my words very poorly. If WOM doesn't want to share her treatments, she doesn't have to. (I just read Anti-Cancer: A New Way of Life and absolutely loved it. Gave me so much hope.)
Susie has never said that anybody passed away. She's always really interested in CAM treatments, in addition to conventional treatment. Her concern for everyone has always seemed extremely sincere to me, even if she disagrees with them.
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Sweetbean,
With bc it's amazing that all of our days aren't rough and frustrating! Have a good evening.
Caryn0 -
Thankyou Sweatbean
from one of those other very special triple positive lobular patients
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Sweetbean, last summer Susie posted that she wanted the alternative/CAM boards eliminated from BCO.
So you're right, in a way she is interested in CAM. It would be nice if she could contribute some CAM therapy for us to discuss rather than attack what we are doing. I'm sure she thinks she is helping us by trying to push Herceptin and chemo but it has backfired. Susie, I hope you realize this.
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Patty - I only ever supported separating them out, which has worked quite well. If I have anything to offer regarding Complementary treatments, I will do it on the correct forum. I'll continue to push herceptin/chemo anywhere (even here) it might help as it has saved many lives, yes even women who are Stage IV - not all, but quite a few I know personally.
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Wornoutmom - I would like to apologise if anything I have written has offended you, I would never have intended that. I certainly never said you were no longer with us. I am so pleased you have found a treatment that appears to be working even if it does involve having some type of chemo. The main thing is that you are happy with your choice and it's working.
Sue
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Yes, I don't remember her wanting them eliminated, just that they should each have their own category. I like reading them both.
Off to take my Tamoxifen, LDN, homeopathy, and supplements...
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Maybe someone here can clarify stage changes once it mets for me as well.
question... if you are dx with stage 1 ( could be any stage) and it mets elsewhere in your body, will you always be stage 1 with mets or do you then become stage IV?
I've heard it said both ways here on bco. I'm not sure what the answer is.
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Eve,
I was originally diagnosed stage II. When my bone met was discovered I became stage IV. You do not maintain your original stage once you have mets. Hope this helps.
Caryn0 -
My understanding is that once there are mets beyond the breast and nearby lymph nodes, you are considered Stage IV. You can be a lower stage if the mets are to lymph nodes only. Here's what BCO says.0
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Abigail, I don;t follow your question about years of study and Lipitor, I don't think I mentioned Lipitor anywhere ever. Please rephrase.
YorkieMom - Per your post about the alternatives clinics and the children whose familes take them there, but should not be allowed to, even should be taken from their families.......
I think right now of the boy with brain cancer who was saved by alternatives only. The young woman who as a child had cancer and her parents chosse chemo and radiation again and again, only to find she haad cancer mets 8 yrs later and they used chemo and she almost died andshe was taken to an integrative hospital and she thrives to this day, year later. The young man who had cancer and opted out of chemo, who begged his parents to let him die and he was turned over to alternatives and lives well and happy. The girl who had liver cancer and alternatives healed her, no reoccurrence six years now. The family I know who had a child with leukemia and used alternatives and the child is well and happy, only to realize that the leukemia could have been a result ofthe toxicity of the nickle in the child's braces that I told them about and which when removed the alternatives worked, but prior to removal, they were not. I could get out books and go on and on and on and on. Read some. Then go to the forums for conventional therapy and read about those children too.
It is a personal call on what to do.
All these families loved their children and made choices based on their instincts.
I will not judge the families who decided for conventional therapy. Since you are bent on judging the alternatives choices, must you do so here?
Do I believe in faith healing alone? No.
Alternatives alone? Not if they are not working right away.
Toxic chemotherapy that is given in high dose? No.
Radiation? No, not at the beginning of cancer issues.
I believe in healing carefully, gently, and if is not working, fix it. Alternatives or not.
Again, you had to bring it back to conventional vs. alternatives. Not the point of this thread.
My point, though, was that the way the 'authorities' on alternative health choices 'got to' the clinics and closed them or sued the doctors was through the cases of the multitudes of children who were FLOURISHING under the care of those clinics and doctors. And these clinics need to be protected.
I hear you. But do you hear me?
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after many uears of studies lipitor (& others) got approval, yet they have killed many, including a dear friend of mine. I think studiesshould be done as long forinstance as traditional therapies have shown value, not for just a few years. as to that I think no drud or substance should be outlawed.
& have been wondering why natural endorphines take longer to come on than morphines. perhaps that;s the natural way to strengthn endurance.
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