natural girls
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I agree with Terri and Kaara. Vivre has provided tons of info that has helped many of us here and I have personally benefitted from her research since April 2009. I, too, re-research the info provided here, but sharing has saved me mucho time and effort ferreting out the info. I have often asked which brands people like and why. Why is there something wrong with that but not wrong with asking the same question of employees at health food stores and vitamin shops????
If someone signs in here only to hawk a product, we will know and decide whether or not we want to think about their product.
Vivre has been a wealth of information since long before she had a favorite supplement provider. I do miss so many who were posting in 2009. I was so fortunate to have my diagnosis when they were all contributing. I would simply not be in such a good place now if not for them then.
Thank you to all who research and share and understand the kinds of things natural girls come here to learn and share. I chose not to do chemo but I read a lot on the chemo threads. I did not, however, argue with them about their choice to do chemo. Same with Tamox. Here we want to learn as much as we can about natural approaches including natural approaches for those recovering from chemo and other treatments.
No one ever seems to get upset when members recommend books to each other (except those who argue about Somers) so why should they get upset when members report back on other things they have found to be helpful?
There is another thread I read that has a tremendous amout of arguing from people trying to justify their own choices by pushing others into making the same ones they made ... This saddens me as I wonder if I would have stayed and learned and gotten healthier had I happened upon that when I first came here so desperate for someone else who "got it". I am so fortunate and so thankful for all the help I received.
Thank you Wonderful Ladies and Timothy too!
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Thanks to you all who do support my efforts. I think we have done an amazing job here of trying to keep the animosity at bay. It is so unhealthy. Sadly, what is happening in this little corner of the world is indicative of what is happening everywhere in medicine. There are those who believe that only allopathic medicine has the answer and the rest is just hocus pocus and vice versa. I believe the truth is somewhere in the middle. But the problem is, why are we not given the whole truth? Why are Doctors who are willing to put their careers on the line by doing so threatened so much? They destroyed Dr. David Kelly for his work with pancreatic cancer, even though he lived for 40 YEARS after the doctors told him there was no hope. He discovered macrobiotics and started adding specific enzymes and coffee enemas and he lived. Yet, the powers that be deny his research. When Dr Gonzales went to learn from Dr. Kelly, as a doubter, and found that people were indeed recovering more than from chemo, he became a believer and has carried on Dr. Kelly's work. This is the same story for others like Gersen. Why aren't these doctors being applauded instead of being vilified?
We all know the an$wer.
Wouldn't it be wonderful if we were all presented with every possibility and be allowed to choose our own weapons? It would have been less stressful for me if I could have been offered the choice to go to a place to learn all about detoxing and nutrition instead of being told radiation was the only option. And it would have been cheaper in the long run. But that is too logical. Instead I had to learn everything on my own, as all of you are too. Luckily, I love to read.
Why does there have to be an "I'm right and you're wrong" attitude all the time We would save a lot more lives if we were just given the truth.
We could be helping each other if we could stop trying to start fights with those who think differently.
I will never ever understand why anyone would even want to read this thread if they think we are all crazy. I never even check out other threads when I can see they are on a different wave length. It suits no purpose but to add more stress. Who needs more stress?????
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Vivre and Althea and the rest of you here thank you so much for publishing the research that you do. I don't always write but I read the threads and have found them so helpful. I am still in the learning stage and am always reading up on new things. Thanks for sharing what you know.
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Today I talked to an integrative medical physician (also clinical pathologist and nuclear medicine) and he told me about cryoablation. Also learned of IPT Therapy, if ever needed. Photoluminescent therapy, and more. Cannot wait for my appointment.
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This was linked from Dr. Northrup on FB. The content is really funny, though the format is annoying:
Speaking of my idol, Dr. Northrup, she will be speaking in NYC at a Health And Happiness forum at the end of Feb, along with Dr. Oz and Usana founder, Dr. Myron Wentz. Could Dr. Oz be next to join the Usana family? I hope so because he needs to get some of his facts straight.
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Vivre that was so funny and so true. Thanks for posting
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vivre: LOL...very true. Reminds me of the time I was in the hospital for heart palpitations and the doctor tried to give me prozac because he said I was having an anxiety attack. It turned out I had PVC's. I told him to take a hike...I wasn't taking prozac! I asked how long I would have to take it...he said "forever". Unbelieveable.
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Since laughter is the best medicine, I have a forum on my website where I like to post funny stuff I find. I just found hilarious graphic about women and sleep. Check it out if you need a little smile today.
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LIKE!!!!
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Something interesting...I got a call from my RO today saying that when she tried to plan my rads treatment from the CT scan that was done Monday, there was no trace of my surgical bed...the site was simply not there. She said it was as though it had never been there...there was only the scar as a reminder, and the small clip that the BS left in place. I remembered that my DS and DIL prayed many times for God to take the bc away, " as though it had never been there"...these were my RO's exact words.
Now the delimma...do I do rads or not? I have a lot of thinking to do over the weekend.
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Kaara will be praying for you. Only you will know what the right decision is. Your gut will tell you.
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Funny, when we mention the chemotherapies, radiation and pharmaceutical anti cancer medicines on this board we advertise their product and provide brand awareness.
I too appreciate the fact that we are not bombarded with ads on this site but I don't see anything wrong with what's being presented in this thread.0 -
Thatgirl, I agree with you entirely. In my mind, part of the purpose of this group is to share what has worked for us. I personally am a distributor for Monavie, and have been taking their products for over a year now. When I received my diagnosis of stage 4 BC, my naturopath looked at the products and told me that they had helped me achieve an alkaline state and did not need to go through a detox routine prior to starting on my naturopathic cancer treatment protocol. I was also encouraged to continue on the products.
My point is, I feel it important to share everything that provides any form of benefit to us in our fight against this pest. Am I pushing anyone to buy Monavie? No. Will I ever? No, this is a personal choice. If someone wants more info I can certainly give them that in the form of a pm.
I love this site as it has taught me so much about the value of support, supplements I have never heard of, advice about chemo types, and the list goes on.
I don't post much, but I admire everyone on here. I intend to post more in future as just the simple act of responding or starting a thread makes you feel so much less alone.
I love all you girls, what an amazing bunch we are!
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Wow Kaara-You must be doing something right. I am so envious of those of you who are really looking at things critically early on. I was just a deer in headlights. I was totally unable to move, much less make a decision for myself. And I did not read anything becauase my wonderful doctors were telling me not to. How I wish I had not been such a good patient and followed all of my doctors' orders. But I could not think for myself. It took me a long time to get out of that tunnel, but once I saw the light, I think that is when I became more passionate about finding the truth. So in the end, I guess it was all for the good. Everything happens for a reason.
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vivre: I believe in the power of prayer, but I also believe that the diet and supplementation program that I've been on since I was dx had a lot to do with the complete healing at the surgical site. One of the reasons I hate doing the rads is that I will have to give up antioxidants for the four weeks that it will take to get through the treatment program. If I could have done it in one week, fine, but four weeks is too long and will set back my recovery program.
I too believe everything happens for a reason, and this new twist to my treatment has given me cause to rethink what I am doing. I refuse to be led blindly into something that doesn't feel comfortable, so I will have to feel it is right before I go forward.
I see my naturopathic doctor today for results of circulating tumor test he ran. Now, why didn't my conventional doctors do this? Wouldn't they want to know if I had cancer cells circulating in my blood? Go figure.
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Kaara I am curious to know why you would be getting rads with your stats. You have small tumor, stage one with low grade or well differentiated and no node involvement. What reason did your onc give you?
Kathy
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Kathy: The reason they gave me is that it would further reduce my chances of a recurrence in the same breast. Rads are always recommended as they are "standard of care". After going over the options and finding out that I couldn't do the type of rads that I wanted which was the partial breast rads for one week, I have decided to opt out of rads altogether. I feel the whole breast rads are an overkill for my stage and grade of bc.
The results of my circulating tumor test were negative...score was zero, so I'm clear on that front as well. Not a guarantee that there couldn't be micro cells floating around, but doubtful.
I will do close follow up every six months with thermography which picks up small suspicious areas.before they can be seen on mammogram.
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Hi Vivre,
I live in NZ and have just started taking Usana supplements. I am just taking the Essentials antioxidants and minerals and also the fish oil. Do you think that is enough to start with?
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VIVRE --SO funny!!!0
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I contemplated posting this, because I do not like to get into arguments, but I decided that I could not let lies about Usana perpetuate without people hearing the other side of the story.
Someone posted a link to a blog by an "anonymous" person who basically ripped Usana up and down. This type of slander is common with competitors of MLM businesses. It is a dirty game that I can assure you Usana does not do, or I would have no part of this company. It turns out that this "anonymous" person is a scammer who has made millions by putting out false information to bring the stock prices of large companies down, then he goes in and buys stock at a low price because it is undervalued, and then profits when it goes up. The jerk was caught and is now in jail for the second time. After his first stint in jail for his business scams, he got out and proclaimed he was reformed and is now a minister (it is sick that criminals hide behind the cloth). He convinced people he was reformed, but was still up to his old tricks. One of the companies he attacked was Usana, and eventually Usana was vindicated, but his BS is still on the internet, which is his goal. It is unfortunate that when the media gets caught perpetuating lies, the way they did by treating this guy as a hero, they never come back and admit they were had. Here is a link to the whole sordid affair:
http://www.laweekly.com/2010-10-14/news/barry-minkow-2-0/
http://blogs.laweekly.com/informer/2011/03/barry_minkow_charged_with_insi.php
While this was happening, Usana founder, Dr. Myron Wentz (who does not take a salary from Usana and donates much of the millions he has made on his patents and books over the years to non profit hospitals and to the Childrens Hunger Fund) won the Albert Einstein Award for Microbiology for his work in developing test kits to diagnose disease. Usana also has a long time partnership with the Linus Pauling Institute where they study the effects of nutrients and they have a milliion dollar guarantee to atheletes that there is nothing in their products that will get them disqualified, hence they are quickly becoming the choice of more and more professional athletes.
I came to Usana after two years of researching all kinds of things, and trying different products. There is a lot of decent stuff out there, but I wanted to have something I could totally trust and not have to worry about it any more. Yes, it is a little more expensive, but when I researched the ingredients, I found Usana makes sure they put the best forms of Vit C, D, etc. in their products. I was so tired of researching that I was relieved that I had found a company with integrity. And is spend about the same I use to, because I take less pills since Usana has great combos.
Are there people in Usana who are unscrupulous and will push people to join? Absolutely. This is true in any business. But I can say that I have met a lot of Usana associates, and for the most part, they are people like me, who have had a serious illness and have been helped tremendously with Usana's products, and like me, share a passion for helping others attain better health.
Are there people who get very wealthy in MLM and those who don't? Absolutely. There are people who know how to run a business and those who fail and blame it on the company, not on their own talents. I know a lot of people who have very successful MLM businesses and then there are people like me, who basically love the products and do not spend much time with the whole business aspect of it.
I know that there are those who will consider this an infomercial, but since I did not start this conversation, I do not think it is fair that the lies should go unchallenged. I want you all to know that I can say with a clear conscious, that I do not come here to drum up business. I responded to a question about what supplements others recommend and I should be able to answer with my opinion without being goaded into an argument and accused of things that are not true. Like many in Usana, my business is something that sprung out of my belief in the product and I am very low key when it comes to whether or not people want to use it. Usana is not a career for me. It is just another tool that I use when I am teaching health (which I am qualified to do and do so on a non profit basis most of the time).
The supplement business is not unregulated, but it is considered a food so it falls under the juristiction of food grade requirements. This means we are not always getting the best products, but the alternative would be that they be considered a drug and become under the control of the FDA. While some may think this would make us safer, the truth is, it would mean we would have little access to supplements, as the requirements to get them approved would be cost prohibitive. This of course would make big pharma very happy, and this is why we have to keep pressuring our congresscritters not to put supplements in the same class as drugs, which pharma lobbyists keep pushing for.
There are a few supplement companies that voluntarily abide by pharma manufacturing standards and Usana is one of them. Their plant has been given the FDA pharma stamp of approval. This means that they have meticulous quality control, which is why they can offer the athlete guarantee. So when you are choosing supplements look on the bottle for these stamps of approval. Whatever you choose, do not choose by price. Some of the really cheap stuff, and most popular drug store brands are indeed bedpan bullets.
One last comment, when you do a google search for anything, keep in mind that people pay google big bucks to get their sites to come up in the first few pages. We all have short attention spans, and most people barely get past the first page or two. Sometimes you need to play detective and dig a little deeper.
I know all the research can be a bit overwhelming at times, but do not take anyone's word for anything. Do the research yourself and try to find the honest to goodness truth. Try different products and see what gives you the best results.
I do not post a lot of links anymore because they were always attacked. That is why I started my own website, so I could archive all the good info I was finding and be able to share it with family and friends who kept asking me what I was doing because I was looking so healthy.
This is not a game for me. This is a passion. It saddens me that there are those who just want to poison the pot. Heck, we are all just trying to thrive here. Why does that mean we have to defend ourselves all the time?
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I think you ladies are definitely on the right track. Research is currently underway and they have had some positive output on the low card diet lowering insulin and thus scientists speculate that may keep bc from reoccurring but its confusing cause that does not correlate with a veggie diet. ("they" shut down your GOP thread??) You are right,drs dont get nutrition courses but I read a really good book by Dr Christine Horner who is a med dr and she went to India to study ayurvedic medicine and their philosophy. Now she is pushed over into the realm of quackery just because she suggests supplements based on research may help prevent diseases! Its as if the established medical community does not want anyone rocking their boat.
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Layla2515: We live in a very politically and profit motivated society. Sadly, one of the downsides is that anything that could threaten that profit is buried before it has a chance to see the light of day. This is why you have to be your own advocate for your health.
The low carb diet simply means that you eliminate simple carbs like flour and sugar or anything that converts to sugar. Fruits and veggies are complex carbs with a few exceptions, and not included in that mix. Hope this helps to clear that up.
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vivre, you touched on a very important topic that is worth further mention -- supplements are not regulated by the FDA. Some people think the proper remedy is to have the FDA regulate them so we have assurance that what's in the bottle matches what the label says. The way things are now, it's certainly a big downside that unscrupulous companies can deceive consumers and get away with it. On the other hand, regulation by the FDA would be disastrous. What is affordably available today would disappear under FDA regulations that require expensive hoops for regulation.
We don't need FDA regulation simply because we can choose to buy from companies that voluntarily submit themselves to the pharmaceutical standards. That way, we as consumers can be assured that the contents of the bottle match up with the label. Lots of good products are out there, but it takes a diligent savvy shopper to find them.
Before I was dx'd with bc, I wanted to be a person who never took a pill for anything, and that included vitamins. Obviously, I've changed my ways. I used to think pharmacuetical grade would be too pricy. In many cases, it's not all that much more than something that's questionable.
You can also look for "NSF GMP" on the label. NSF (National Sanitation Foundation established in 1944) is a non-profit dedicated to certifiable health standards for manufacturers. GMP stands for Good Manufacturing Processes. One place to find this standard of quality is vitamin research products at vrp.com. I like to shop in a way that I can avoid shipping fees, and they have reasonable threshholds for that, plus lots of other discounts.
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Althea: good post...thanks.
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Hi. I had a birthday last week and someone gave me a membership in "life extension" as a gift. Is anyone here familiar with their supplements and does anyone have advice? Feel free to private message me if it is not appropriate to discuss a specific product here. They sent me so much reading material that I never will finish reading it all and I don't want to feel like a chump and just buy stuff because it is offered with a persuasive set of materials. On the other hand, it does seem to make some sense.
Thanks all for reading my post and for our time.
Mandy
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I also use VRP Althea, Vitamin Research Products. They have standards that I trust.
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I had my meeting with my onc today and went over the progesterone research. At the bottom of the discussion we finally got to the core of the issue. All of the research that I had wa "lab research" not clinicical research. Lab research is not good enough to alter the course of treatment He said that unless clinical trials are done with humans rather than little parts of tissue and cells or in animals there is no way to know or to prove that a progesterone therapy would work as it does in the lab. A living human is more complex.
OK I understood. Then I asked a couple of Million Dollar questions. Who pays for clinical trials?
Answer mostly Big Pharma. Why have there never been clinical trials based on all of this lab research by Big Pharma? Answer. Because progesterone is cheap and they can't make any money from it.I looked up megace clinical trials and they have been conducted. One I saw was conducted by a couple of pharmas and one by the N.Y. School of Medicine. Megace is a progesterone derivative used when Tamoxifin no longer works or in uterine hyperplasia.
The onc explained that tamoxifin binds to the estrogen receptor but sometimes stops working because the cells "flip" then they use megase, a progesterone based drug.
Maybe there is some hope that one day somebody will fund the clinical trials on progesterone treatment of breast cancer as a first line treatment instead of chemo or hormone blockers.
He also said that if I chose to do something on my own,which I could, then I would be taking a big gamble since there is no way to know how much or how little would be necessary or whether or not it would cause more cancer. He said I could gamble if I wanted to but if I gambled and lost it would be my life. He said that if he told me to do progesterone therapy on my own and I died he would shoot himself for doing so.
So the bottom line is that until there are progesterone clinical trials with humans, the only herapies we have to beat cancer are the ones that have been tested in clinical trials such as chemo and hormone blocking drugs.
I still don't have an answer as to rads. The rad onc, my onc and a group will be having their usual meetings to discuss various patients and they are going to bring up my stats and see what everyone thinks. My onc still said I probably won't have to do it. I must wait until after rads to take Armidex so I have been given another short reprieve. It looks like it will be Armidex regardless and I will have to see if I can do it.
Kathy
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sas-schatzi wrote:
Anyone interested I wrote a new topic thread on constipation------ah the things we share-sheila
http://community.breastcancer.org/forum/6/topic/781867?page=1#post_2830873
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@Mandy: My only feedback would be to highly recommend further research, and cross-ref with medical studies pertaining to your specific diagnosis. I've found that kits of products are most often fashioned for the most common type of breast cancer (don't take in consideration all the genetic and receptor status differences) and are not well-suited as complimentary-to-standard-treatment supplements.
Yeah; It's a ton of work / research to do, each step of the way... We really do need more integrative and cross-disciplinary treatment experts to get involved in these processes....
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Mandy .. From what I have seen, it appears Life Extension is one of the better companies but I still don't know who is the "best". I join Life Extension every year and have had free phone consultations with both their breast cancer specialist by appointment and the ones you get just calling in. I do further research on whatever they say before I take it as gospel. I also use other brands depending on what it is and because LE doesn''t have everything. I am also interested in Usana but was unable to decipher their site ... but that was more than a year ago and maybe they have an easier to navigate site now. Because the only combo I am currently taking is B vitamins and even with that I take B12 in addition ... it was a mind numbing process to try to switch to a brand with combos. My separates don't run out at the same time and I generally stock up.
Mandy ... here is another example why I use Life Extension. As a member, I bought $391.95 worth of products minus member savings of $130.35 so paid $261.60 plus $5.50 shipping. Every year when I re-join, they give me a credit for more than the cost of membership for products so the membership fee is a wash. They also have a big super sale every January so I stock up. A month before the above-mentioned purchase, I spent $264.20 at Vitamin Shoppe and paid $5.33 sales tax. I purchased enough supplements, coconut oil, hair and skin products from Vitamin Shoppe last year to get a $150 credit. So, check out any benefits offered by where you buy too!!! I buy many different brands. Vitacost is a site a lot of people buy from. I even buy from Amazon. Once you know what brand you want, it is easier to find deals. The B12 I like comes from a bodybuilding site. My organic grass fed whey protein comes from Defense Nutrition. Life Extension also sells other brands. With my member discount I get a much lower price there for ecoNugenics PectaSol-C Modified Citrus Pectin than from anywhere else.
So the short answer is...Yes I think LE is a good company and I do buy some from them. They don't have everything I want in the amounts I want so I also try to find exactly what I want and then try to determine from my options which company to choose. Same with purchases of organic nuts or teas or tumeric or cinnamon. First I find who makes it at all. Then I choose between them. I have also known of people who need to change from a perfectly good brand of D3 to another because the one wasn't working. For someone like me who needs 15,000 to 20,000 IU of Vit D3 to keep my levels up, I have switched and combined brands. Right now I'm trying just the LE brand because I tried so many I wasn't sure which was really working. Then my research tells me that having to take so much is what has increased my LDL level so I am considering ordering those UVB lights from Mercola so that maybe I can get off the pill form of D3. I am also trying to sit in the sun, but it is winter. My doc has been foaming at the mouth for years to put me on statins and now I am increasing my LDL. I do know that D3 is far more important for my health than worrying about LDL...but still.
So, Mandy ... please share any research you find about who is the best of supplement manufacturers. We all need to learn and keep up to date.
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