natural girls
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MBJ- you just provided yet another link in connecting the dots leading up to my BC...early menses (age 11) check, an iron level out of the world two-three years ago (and I do not drink) that had OB/GYN and an endicrinoligist <sp)completely stumped- eventually abated but was told if levels did not decrease I would be "bled". The endo tested me (every kind of thyroid level, blood levels for everything and univalysis) til the cows came home-my piticotin <sp? level was high (bastard squeezed my right nipple to prove that there was actuallymilk in there 20 years after last giving birth)-so he tried some crazy drug that is used to treat some other form of cancer that I did not have but thought it might help- did not and I was pissed for trying some strong drug on his whim....all very odd...The OB was very worried bout the spike in my iron level...we never did find what caused it to come or go...but in retrospect, I wonder if that is what helped turn on the BC gene...never know
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I just read, read, read and read some more. So much info is contradictory. The iron connnection is from Mercola's site and was forwarded to me by a BC friend. I really don't know enough to comment but the info was compelling.
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For those of you with chronic low body temp and fibromyalgia symptoms: http://www.wellsphere.com/fibromyalgia-article/fibromyalgia-and-low-body-temperature/1295181
Also, do a Fibromyalgia search on this site to self help these symptoms: http://www.drlam.com/
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Okay, after stopping all my supplements and then re introducing them, I think Melatonin is the cause of the run-to-the-bathroom diahrrea every morning. I didn't take it last night and today I'm fine. I do want to continue taking Melatonin as I fall asleep quickly and sleep so soundly, I never even wake up during the night. I'm wondering if it might be due to this particular brand of Melatonin I know Life Extension says the only sell from European sources to be sure of quality. My brand is "Country Life" from Whole Foods. I'm also wondering if they have a coated or time release Melatonin that might dissolve lower and cause less gastric SE. Anyone have an opinion?
This brings up a whole other concern about vitamins and supplements. As they are not regulated, they can be manufactured anywhere in perhaps non sterile, dangerous conditions, right? How the heck can we know they weren't manufactured in some dirty back ally in China, then shipped here for packaging?
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Designermom,
Maybe it is a coincidence but I had a bad experience with Life Extension Melatonin a few years ago. I'm so glad you figured it out by process of elimination. Good work!
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DM- the best assurance for a supplement is to see if it has an USP symbol on it...this singifies that the manufacturer has agreed to verification of ingredients. USP is a great organizationan-not all companies that make good supplements have it but it is a start. If you give me some brand names of what you are taking I can see if we have it in my database at work as to where they are manufactured....that is what I do for a living-track pharma/bio manufacturing and research facilities. Also why I do not like the majority of generics...bulk manufactured in India-no matter who the owner is...and the FDA has not visited a plant there in well....let's just say no one is watching the store too closely- too many mfg plants too little people too much money. Some are made here or in Puerto Rico (which supplies 60% of all drugs consumed in US and is a good place as is it one of the main industries there and very closely monitored-when a problem pops up=it is addressed immediately)
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Designer Mom-
I'm glad you have found the cause. It could be one of the filler items. I had to try several brands before I found one that seemed to work well. The Pure Encapsulations brand has worked really well for me, as I have a ton of allergies. I take a number of their products. The only problem with them is that they have 20mg or 3mg melatonin - and since I take 12- 16mg - it can be a lot of extra pills, even though they are small.
I can also take the 10mg Life Extension melatonin as that one is corn-free, as opposed to some of their other doses have corn. I then can add one or two of the Pure Encapsulations 3mg capsules to get to my dose. I have not done the time-released - so I can't speak to that.
Beth
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DesignerMom- I have a very good reaction to Magnesium -- akin to taking Melatonin for sleep. Have you tried using Magnesium prior to bedtime for restful sleep? Perhaps you can achieve the same effects you have from Melatonin with Magnesium.
Glad to know you've figured out what caused the problem.
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Hi Ladies..:)
Just wanted to share my final pathology report. First to say that the biopsy was IDC, Stage 1, grade 1 with mucinious and tubular features. For that reason, I did not consider what I had a serious cancer. I've told friends that it would probably kill me around age 100
I was tempted to leave it be. My bc surgeon first suggested a blmx. I thought A BLMX and sentinal node removal as over treatment. After two months of dragging my feet, I did the lumpectomy. When I went in for surgery, I was asked to sign the consent form also for sentinal node removal. The nurse said they couldn't move forward with the surgery until I signed the form. I felt that I had no choice. Plus, in the end, who wants to fight with the surgeon holding the knife (sad...I didn't want the sentinal nodes removed).I was first alarmed that the stitches were in a different area than the biopsy. The biopsy brused the whole left side of the breast. The right side looked fine. The stiches were on the right side. I thought the surgeon made a mistake. It was my mistake. She got the tumor. It was only as suspected 1 centemeter. It was pure mucinious, grade 1, invasive. Those types of tumors rarely invade the nodes or mets.
The surgeon asked if I would do rads. I said no..and she suggested tamoxifen since I'm ER + PR+ ....Again, for me, it's over treatment. It's all said and done. Except for the sentinal node healing. I have a large hard lump under my arm and in the breast. I'm find with the surgery...the scar line isn't going to be bad. It's healing up nicely. The surgeon actually did a great job. Everything looks good. I probably won't be visiting BCO until my annual mammogramn. BCO not a place where I'm going to find the support I need for alternative cancer treatment. I have another alternative site that a few of us have put together...hope it goes
and a lot going on right now. (((HUGS))) to all of you sweet ladies. Evebarry
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Evebarry: I am sorry that you don't feel you are getting the necessary support here. The important thing is that the cancer was removed. Many here have not done radiation or Tamoxifen, and do only natural and alternative remedies. I would be one to refuse radiation but I was lucky that I didn't need it and if I were ER/PR+, I wouldn't do Tamoxifen, either. I now only do all things alternative in the hopes it will never return and I wish you only the best. So sorry they had to remove the sentinel nodes. If I had a choice, I would have kept mine, too. Hugs.
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Hi eve, so glad to hear you're on the mend and I hope your lumpectomy will be the last encounter you'll have with this lousy disease. You sounded so bent out of shape last week, and rightly so. It's reprehensible for anyone to expect a release form to be signed under the circumstances you endured.
I know how it is to have something unexpected crop up. I had a freaky side effect after my surgery. Food wasn't moving through and by day 5 it wasn't staying down either. They took xrays and I was so worried there'd be some surgical sponge or tool lurking in my intestines. And I went to great lengths, literally, to avoid second rate surgeons! Thankfully, nothing foreign was hitchhiking within me, but boy howdy, no one ever told me how SICK you feel when you can't poop. (my freaky side effect, btw, was an ileus, in case anyone's wondering).
On a different note, I decided to start that thread I was toying with many pages back. I decided to call it Aging Parents Anonymous. The only thing I know about the various 'anonymous' groups is what I've seen on tv or in movies. I hope I haven't committed any blunders before it even gets started. I don't think we can change the title after the fact, so I hope it's an ok title for what I hope the thread will be -- a support area for those of us who are caregivers to aging parents.
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There are certain members on BCO who can be cancer to a thread. I certainly hope they don't participate in the aging parents topic or they will drive away the good posters.
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i think that is great topic Althea...
And Evebarry-don't go! i think there is a lot ofsupport for alternative therapies here on BCO...any arguing just gives me good practice for my docs. If forces me to research more...always a good thing:)
Big hugs....
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Thanks, Evebarry for the detailed update. It was very helpful. I agree with you that there is nothing to be gained by staying here. The natural girls are great but the other threads have too many trolls and people giving spurious advice. I will meet up with you on the private board! We love you!
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Hi evebarry! Thanks so much for the update! Although I am on Tamoxifen currently...well still working my way up to 20mg, I am all about natural things. I AM natural girl....really, green smoothies, no sugar, healthy eating, been for years so this is how I've been living anyway. I would rather not take Tamox but am too afraid not to unfortunately at this point. But I'm on this thread because I am very interested in anything and everything I can do to help my body...and maybe forgo Tamox at some point...I don't know. Will see how I tolerate it. I'm sorry you haven't felt that you've gotten the support here with the natural route...but I see what you mean....I've read the threads. But just wanted you to know that I support you...or anyone who chooses whatever they choose for their life, because it is afterall, their life. I am openminded and love to read and hear about all things related to my health.
I wish you well and hope you reconsider not joining in here with future discussions.
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Evebarry-
You sound much more "centered" than your post after surgery
. Owning your own treatment is critical. Wishing you the very best!Beth
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marianna, hlth, annette, mollyann- thanks for the feedback and advice on Melatonin. I didn't know Magnesium could help with sleep. I am supposed to add that in for the iodine protocol anyway I think. Maybe it can do double duty. Your advice is much appreciated. I'll keep you posted as I am my own guinea pig.
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Designermom: I would get a time release sublingual Melatonin and start out slow. Not all Melatonins are the same.
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Designer mom were you also taking DHEA? One of my friends couldn't take it because it gave her diarrhea.
MJB thanks for the info on the iron. I was aware of the sugar connection but not the iron. Will try the link also.
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DesignerMom-It may sound like a good thing, but we do not want govt. regulation of supplements. For each supplement to pass muster, it would mean millions of dollars of research. No company could sell anything like this. Of course, this is an objective of drug companies. If they could get rid of supplements, they would corner the market. We would have no choice but drugs. Plus, they are the only ones who have the big bucks to do all the research. They have already driven iodine out of our drug stores because they know it would eliminate most of their drugs. Imagine if we had not Vit C or D.
I know I keep beating this drum, but this was an issue that plagued me for the past 3 years. I was sick and tired of getting taken for taking supplements. I finally started reseaching like I do everything else. When I came across Usana, and looked at the doctors and scientists behind them, the quality control, and third party ratings, I tried them. I have never had such fantastic results, both in my tests and in the way I feel. There are only 2 US companies that maintain pharmaceutical standards on all their products. The other is Douglas Labs, who only resell under doctors labels. The other brands are all made by about half a dozen supplement companies in the US under different labels. You may very well be getting the same thing with different brands.
Usana not only tests each batch for purity (pharma standards only require every other batch), but they test each ingredient as it comes from their supplier. They offer a million dollar guarantee to athletes that their products do not contain any banned substance. They carry the NFS stamp of approval, as well as a 100% potency guarantee and have received the Gold Star rating by the Nutrisearch Guide scientists for the past decade. They were rated #1 in customer satisfaction by consumer guide. While life extension has a lot of great information on their website, and they do have a flagship product that gets a high rating from Nutrisearch, they do not do a very good job of showing their manufacturing sources. They do not follow pharmaceutical standards, just food grade, where there are less requirements.
DMom, if you are having trouble with melatonin, it is probably the brand. Usana did not even begin to process a melatonin product until they could offer a pure source, which they did after years of research. It is called Pure Rest and comes from a source in Switzerland. I am going to send you some and you can see if it makes a difference.
I know there are those who may think that I am just pushing products here. But most of you should know that I was just like you, and trying this and that for a long time. I could care less if you buy Usana from me or someone else, or just go to the site on the internet (though you will pay a bit more). All I am trying to do is save you some time and help improve your health. I learned all this the long hard way. I am just trying to help you find it faster, as this seems to be the neverending conversation. Don't believe me. Do the homework. Don't just go to those sites that pay people to write negative stuff about network marketing. All marketing is done person to person. If you were buying a TV, would you listen to a friend who has a certain brand, or just go pick one off the shelf? Or better yet, do what I did and be your own guinea pig. Do your tests before and after and see if they are any different.
Eveberry-I am so happy you have finally found your path. I am sorry that you feel we were not of any help or that my website was too confusing for you, but I hope you know that I have always tried to help you as best I could and I hoped for the very best for you. I will continue to do so. (hugs)
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I got very dizzy taking Melatonin. What dose do you all take here?
Vivre - I saw an oncology dietitian and she told me that "Nature Made" came out on top in studies year after year as far as having the amount of ingredients shown in the label.
Any comments on that from your research? You seem very knowledgable.
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I wanted to thank you sweet ladies for your encouraging comments. I will pop in every once in awhile to see how you are doing. And in so doing, I'm sure I'll add a few comments here and there. For sure in June...yearly mammo.
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Rubyeye: How much did you take? I found that you have to start slow and build up to a dose and then cut back if you can't wake up and are groggy in the morning. If you take a bunch of pills all at once you are going to have weird side effects.
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evebarry: You might be interested in checking out the www.drlam.com site. So much great info on healing naturally. I just started getting some over the phone coaching from his team and it is such a different approach then my integrative dr. does that I am hoping I will never have to deal with BC again.0
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Hotflashes!
Yes, chemo puts us into early menopause. Is there anything natural we can take for those hotflashes? I am sure this has been addressed before, however we are now up to 269 pages please don't make me seek and find.
Thanks for any forthcoming response...
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fighter: Because you are triple neg, you do have the option of doing bioidenticals. Have you had a blood test done to see what all of your hormone levels are? I just did this and I am now balancing with pregnenolone and bioidentical progesterone. I also take panax ginseng and it helps with the hot flashes. Comes liquid in a small vial that you drin through a tiny straw.
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For hot flashes: organic, non GMO soy milk (maybe) 3 ounces every 5-6 hours does the trick for me.
A bit off topic: terrific post on the "over diagnosis" in the U.S. by The Ethical Nag http://www.ethicalnag.org/
Here's an excerpt from her blog:
According to a trio of widely published American researchers, many of us are "over-diagnosed" by being labelled with a medical condition that will never cause us any symptoms or premature death. We are, they tell us, mistakenly swallowing the popular conviction that early detection of everything is always for the best.
Their new book, Over-diagnosed: Making People Sick in the Pursuit of Health, claims that over-diagnosis is in fact one of medicine's biggest problems, causing millions of people to become patients unnecessarily, producing untold harm, and wasting vast amounts of resources in the name of disease mongering.
You can read the entire post at www.ethicalnag.org
Best health always to everyone!
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I have to say I'm wondering about over treatment as well as over diagnosing. When I go to the recomendations for me I find it isn't recommended I have chemo or take any Al's, yet it seems all of us are being told by our Onc's we need to through everything at the BC not matter what stage we are.
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supermom- Thanks for the article. As I am still "not at peace" about declining AIs, it is timely. When did our society all of a sudden become predominantly sick? When I was a nurse back in the 70s, our doctors treated illness and disease, not the possibility of getting it. Then you add in the bias on research and drugs (university grants from pharmaceuticals), sure makes me wonder!
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I'm not sure if I'm on the right thread and if not, can you point me in the right direction, but... I threw away my bottle of Tamoxifen on Thursday. I had only been taking the pills for about three weeks. But during that time, I've been doing a lot of research, and most of what I read said that for DCIS dx in particular, the benefits of taking Tamoxifen don't outweigh the risks of taking it. I have no regrets doing the BMX and am incredibly thankful not to have needed chemo or rads. But I don't want to spend the next five years worrying that I dodged the breast cancer bullet only to be hit by the uterine cancer one. Or blood clots, or any of those life-threatening risks. (I wasn't worried about the hot flashes and those inconveniences.) So, before I see my oncologist next Thursday for a follow up appointment and admit to what I did, do you all have any suggestions as to what i can be doing during this "prevention of recurrence" stage? I'm doing the cruciferous veggies and the dark fruits, "trying" to exercise and reduce stress. I take multi-vitamins and am trying to figure out if I should be taking other supplements (curcurmin? iodine?). I would like to avoid the toxic prevention route, and hope you guys can give me a list of suggestions. This is a long thread, and I would hate to have to skim through 269 pages if you can recap maybe some of those useful bits? Much obliged!
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