natural girls
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All you natural girl veterans I am trying to develop my complimentary game plan. Several of you have been very generous sharing details of your own plan and I thank you so much. As I can not pay for a naturopath's advice right now, I have to figure it out myself. I did have my vitamin D tested and am supplementing it with D3. My Onc mentioned my liver blood test was "a little off". Of course she did not go into detail. I have asked for copies of all my records so I can do more research. However, I suspect my liver is screaming from trying to filter all the toxic chemo. Any suggestions? My diet is already pretty good. I'm trying to improve it more, trying to reduce cheese and dairy in particular. I'm trying to drink more green tea. Any other suggestions as I get ready for the next onslaught of radiation?
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Designer Mom: f it's any consolation, my liver numbers were off during chemo too. They are now normal, but I have started taking Milk Thistle which is supposedly good for the liver.
Mandy
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SuperMom, I'm so glad you posted that Susan G. Komen list of sponsors. I am as fed up with pink awareness as anyone, but, you know, I was kind of surprised at how much Komen has benefited from some of the corporate affiliations I dislike the most. It was an eye-opener.
I really like your idea of asking that more funds go towards nutrition & prevention research. I think most people see the pink ribbon campaign as something that saves lives, and in some cases it surely has. So I really like the idea of asking for inclusion, rather than criticizing the campaign, which I've done a lot in the past couple of years (criticize it) -- ever since the breast cancer facility where I got my dx sent me off that day with a cute little pink shopping bag full information and pink gifts -- sort of like this was going to be fun.
I'm wondering if one way to go about your idea would be to somehow offer a challenge to a list of natural-minded corporations to donate to Komen or elsewhere with the stipulation that their donation(s) be used along the lines of nutritional and prevention education and research. I don't know if Komen or any existing organization would accept a donation with those sorts of strings attached, but money talks, so maybe they would???
DesignerMom, I used an herbal liver detox product following chemo. Check Whole Foods or similar natural foods market for some options. Also, in terms of a complimentary game plan, exercise decreases our recurrence risk by something like 35%. I'm sure that's a relative factor (vs. absolute), but it's enough to get me out the door and walking several miles most mornings, and something I put high on the list of preventive things we can do. Deanna
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dlb823, I like your idea of a liver detox. I know I can't do any more chemo, but can still feel the after effects of the 1 treatment I did take. I feel like I need to get it out of me to stop this radiation recall burn I'm still dealing with.
I had no idea exercise can help that much. Boy am I going to take my exercise more seriously now.
Can any one tell me who I should talk to about where my vitamin D levels are?
Karen
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Karen - I rarely post here, since others know so much more than I do. But, I'm pretty certain,even I can help with this. Ask for a Vitamin D,25 Hydroxy test; your Onc may actually be doing it already. One interesting thing though is that the old way of thinking was that "Sufficiency" was 30-100; well, these days, it seems that between 70-100 is the best target. (I take 5,000IU of D3daily since 2000IU did absolutely nothing to improve my numbers.)
All - I've learned so much from this thread. Thanks to you, I supplement with D3, Fish Oil, CoQ10, Glucosomine and Tumeric; I buy from Vitacost and Swanson, and even belong to LifeExtension. While the Arimidex threads help me deal with the specific SE's of A, you guys help with the Big Picture.
Now, I'm looking into adding Iodine, probably 50mg.day of Iodoral (but that's 4 pills; does anyone take less ?) and unfortunately my Onc is clueless about anything that even slightly varies from the traditional. I've been reading and reading (here, many linked articles and breastcancerchoices) but there's a lot of information and I could use some help sorting thru it.....Since I'll be taking it to help lower my estrogen levels, is there any reason to have a TSH or Iodine Loading Test ? Is there any possible downside, esp if I keep it at only 50mg ? What else should I know ?
And, of course, thank you for everything.
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Thanks, Deanna, for the reminder about exercise being so important....I think I might've forgotten why I do it!
I also wanted to say that, as an accountant for non-profits (in a prior life....) donations are made all the time for specific uses....and the recipient is held accountable for how that money is used. The accounting dept will call them Restricted Funds, and auditors will check on them to make sure they are being spent appropriately. I cannot imagine anyone turning down the donation as long as they have the ability/resources to fulfill the request of the donor.
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Labs for vitamin D levels and practically anything else testable can be ordered online. LIfe Extension at lef.org has tests, directlabs.com, canaryclub.org are just a few of many sources available. Can't comment any further as I have so many tests I want to run and I don't have the necessary dollars. The way I understand it, you pay for the labs, then you get paperwork that you take to your local quest or labcorp for the samples to be collected.
Regarding support for liver issues: most of the dinners I've eaten since April have come from recipes in The Liver Cleansing Diet by Dr Sandra Cabot. In a nutshell, it's food made from scratch, no red meat, no dairy. I still eat yogurt for breakfast several times a month, but I know what dinner without cheese and butter looks like now. In August, I drifted away from this plan and felt worse. Started using the recipes more in September and started feeling good again -- until I found myself short on time, and I resorted to my oldtime fave -- pizza. Today I have a blistering headache! I hardly ever get headaches.
Dr Cabot has a website at liverdoctor.com where she offers liver tonic capsules for additional liver support. I've been taking so many supplements for so long and was wondering when my results would ever show up, so I started thinking my liver needed some attention. I seem to be realizing excellent benefits from this approach. I still have a lot of ups and downs, but I'm feeling better overall than I have in a looooooooong time. I highly recommend to anyone that you be nice to your liver.
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I started going to an acupuncturist when I first started rads. He works on my liver, says women with BC have trouble with it clearing out the toxins. I must admit my rads went really well only the burn issues. I plan to go to him for several more months 1x per week.
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Mandy and Deanna- Thank you for all the good advice. Will check to make sure I can take milk thistle during rads. If the rain ever stops, I will get out there and power walk EVERY day, yes I will!
Like all of you, I wish some of the pink donation dollars would go to preventive and nutrition research. Though I am happy about all the medical research, wouldn't it be great to PREVENT or REDUCE the BC occurrence in the first place? One lady on BCO posted saying she had a small business and wanted to give all her commission dollars to a BC organization. She contacted Komen and they said the minimum donation they would accept from a business was $25,000. They turned her down! Wouldn't it be great if some of the companies we purchase from to help us get healthy would ear mark donations for complimentary researd (vitamin companies, Whole Foods etc....) ?
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Since Whole Foods has become my new "Costco" (can't get out of there under a $hundred or two), I'd think Whole Foods would be a great org to donate to Susan B. Komen. I second that one, and think this is a great idea! I, too, am very sick of pink!
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The only problem is that some of the nutrition info would cut into even a Whole Foods type of store's profits---the indication that even organic dairy might contain estrogen is not something that a supplier of dairy and cheese would like to acknowledge. But it could be a beginning and perhaps if the management learned of these issues, they could pressure some of their organic farmers to comply with better methods of producing dairy.
After reading about Dr.Davaasambuu's work, I wrote to three small dairies where I had been purchasing products and learned that at one of them, they follow the safer practice of not milking cows during the last three months of the pregnancy. While I don't use much dairy, that is the only one where I will consider buying milk products at this point. Perhaps getting Whole Foods, which is probably the largest of the so called natural food stores, involved would lead to better and safer practices in the long run.
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Whole Foods tends to focus on local and has been terrific in our city...which is what I personally love! They donated healthier food choices (like chili, organic crackers, frozen fruit bars, etc.) to our baseball snack shack because several of us mom's were sick of the hot dogs and hamburgers AND candy/soda the kids were eating EVERY night. (One dad/coach was letting the team eat skittles, candy bars and Italian ice after every practice before dinner. And wonders why his own child is obese?)
Anyway, Whole Foods also hosts cooking classes at the Boys & Girls Club and sponsors many other local events.
Whole Foods is also providing most of the ingredients for my local cable TV cooking show (no dairy recipes of course) and donated the food. So...they are very, very active...in a very different way. I bet over 90% of the people that shop at Whole Foods have had a health problem in the past that they attribute to diet and their disease. I know I'd never set foot in their stores before I got sick.
It is up to "the bigs boys" like Susan G. Komen and the American Cancer Society to take 50% of their research money and allocate it towards (unbiased) nutrition and cancer research. Look at how much we have all discovered on our own and we don't have PhDs in molecular biology...imagine what a few billion bucks would do!
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When my neighbor told me several months ago that drug companies actually pay doctors to RX drugs, I thought he was crazy. Well, it looks like he knew more than I did about it. So while the following article has nothing to do with breast cancer, it has everything to do with credibility in the pharmaceutical industry, which I thought made it worth sharing:
PS ~ What a shame that $422M couldn't have gone to breast cancer research!!!
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dlb823, I never gave it a thought, but I guess when we get free samples from the Dr. it is the RX companies trying to convince the DR to give us that medicine. Just last month my insurance took a couple of meds my husband and I use off their preferred list. My Dr. didn't even want to spend the time coming up with a new generac that would be similar, he left it up to us.
MTV, My onc. has only checked my blood levels for the chemo, but will ask her if she is willing to check my d levels. I already asked her to check my estrogen levels, was told they don't check that. How can they know if the meds are working or not, or for the matter do I even need them.
Karen
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Karen, free samples to influence what a doc RX's are bad enough, but still a far cry from monetary kickbacks. The latter completely puts drug company profits & physician compensation/greed above what is in the best interest of the patient, and is totally despicable, IMO.
And what you ran into with your onc not caring about knowing your estrogen levels is very typical for oncs. They rely completely on standard of care guidelines, so why test? It's not going to make any difference in their recommendations. It wouldn't surprise me if she won't check your Vitamin D level either. If that happens, see if your PCP will do it. Mine has been enthusiastic about checking many aspects of my health post chemo & rads, including those, and hopefully yours will be, too. Deanna
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Deanna, My PCP didn't even know who the cancer patient was. He thought it was by daughter who went with me for support. One can only hope he will be more proactive now than he has been in the past. I also plan to get myself a wellness Dr in my area to do some testing and help me with a more holistic approach to this entire thing. Having looked over this board over the last couple of days I know I want someone involved in my treatments who doesn't just follow protical.
Karen
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I just was going back through the last few pages of this thread, looking for a post about root canals (which I didn't find), and noticed a post two or three pages back by onestep that looks like it slipped through the cracks due to how fast this thread often moves. So I just wanted to say, sorry! We absolutely weren't ignoring you. Sometimes we just all talk at once here! So about your question, I didn't have TEs, so can't comment on doing acupunture or other holistic treatments where you're used to being on your tummy, but hopefully others can. It sure doesn't seem like you could lie face down w/those in, but I'm sure someone can comment from firsthand experience.
And I was looking for the post about someone actually having bacteria from their mouth found in a breast infection pathology. Who posted that? I thought it was so interesting, I wanted to ask you to re-post your experience on the separate thread we have going about the link between root canals, because, understandably, there are quite a few doubters there, and I found your experience one of the most compelling for a connection between oral issues and breast cancer. Deanna
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Karen...that's the million dollar question
How can they know if people "need" the drugs and if they are in fact working if they don't know what your hormone levels were before the drug and what they are after a few months on the drug.
I am using natural remedies to reduce estrogen...seems to be working.
I also use natural progesterone from my compounding pharmacist/holistic/M.D. gyno. to counteract the bad effects of estrogen
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I think Whole Foods is revolutionizing eating. As a business person, I have also been amazed at their ethical, progressive business practices (profit sharing, a certain amount of health insurance benefits can be used on preventive things like gym memberships). Though they still sell dairy, I don't think EVERY person will end up anti dairy Also, by promoting other things, perhaps their increased sales in certain areas would offset lower dairy sales.I would love to see if we could find a science researcher who is trying to scientifically document nutrition related-cancer increases (even the vitamin D connection). Perhaps Whole Foods could directly fund some of this research (no need to go through Komen, they are doing fine in their endeavor).
kira- My Onc said checking my hormone levels would not give true information as my hormone levels are fluctuating all the time. I'm still researching to see what I can find out. However, she immediately checked my vitamin D level when asked and it was unbelievably low and she put me on prescription strength vitamin D3. Even the medical doctors now know that low vitamin D causes increase in BC. Google it and you should be able to print off articles for your Onc. Demand it, no need for you to pay out of pocket for this bloodtest. It is MEDICALLY indicated.
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DEanna...it may have been me. I had the same bacteria in breast infection that is commonly found in mouth. When I get a minute I will look for the looooonnnngggg explanation.
Dental professionals continue to get root canals themselves so they do not buy into the problems associated with root canals on the same meridian as breast cancer. Mine was...tooth #30 on same side as BC.
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Luna, which side was your bc? And where can you find the meridian information? Is it the same as an acupuncture chart?
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Luna, I have a question how did they decide it was a bacteria found in mouth infection. I have been fighting a comman infection the last 4 weeks in my breast but no one even suggested where it came frum. All I'm being told is the reason it has gotten so bad is because of the chemo.
Karen
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To the question about sleeping on your stomach with TEs... I do it! (c: Dunno if there was more to the question but there ya go.
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Here is an excerpt from something I Pmd to someone a while back
4 extra surgeries because of infection mostly on the prophy side ( it is mad at me because I lopped it off unneccesarily). Do you have any root canal teeth that could be failing????? I had one root canal done about 4 yrs ago which never fully healed. Long story. Dentist and Endodontist thought it was fine and still healing. Googled it and there are people out there who think root canals always harbor bacteria. All my dentists including the dental surgeon think that is hogwash. My plastic surgeon and I are the only ones who believe that the mouth bacteria that showed up in my TE came from that tooth. For some reason even the oral surgeon thinks it would have to be a raging, can't talk kinda bad...tooth infection for it to travel to my chest. How can it be that a single cancer cell can go anywhere it wants but a normal strep B cell can't go to my chest unless it is a horrendously bad painful infection??? Google people maintain that breast cancer shows up on the same meridian as a root canal. That theory would work for where my cancer was. Anyway oral sugeon thought tooth wasn't healing and shadow on xray meant it should be extracted. Turns out there was infection even under the root that appeared fine on the xray. No more infection so far in my left TE. My PS had a couple of other situations where women who had recently had tooth abcesses had recurring TE or scar infections as I did. For the last couple of surgeries, I was on augmentin because it cures the type of strep infection that had presented before (not the strep throat kind). I have decided that in the future if I need a cap, I will get that. If I need a root canal, I'm having the tooth yanked and then depending on where it is...a permanent implant. If it is possible that you could have a tooth connection, testing the infected fluid can tell you if it is a common oral bacteria.
I can't remember where I read or found a diagram showing the meridian of the 2nd from the back (not counting wisdom teeth) being the BC tooth. Someone else chimed in on one of these threads that she had the same 2nd from back tooth and that she was told by her homeopathic or holistic doc about it being the same meridian.
Sorry...I can't back any of this up with hard research....just anecdotal evidence where no other explanation seemed logical.
All I know is once the root canal tooth was out, I had no more infections. Prior to all that root canal stuff...I was never prone to infections or sickness of any kind. I recently had the tooth behind that tooth extracted because it has felt "kinda weird" for a while and had a shadow under it. With my recent revision coming up, I wasn't willing to fool with it any longer since I already have a space there to decide whether I want implants or not. I'm not planning to keep yanking teeth but I am also not willing to risk infection until I am sure all my revisions are over. and, even after that...implants are foreign bodies and more subject to infection from other parts of the body. I am researching my brain sore about dental hygeine to keep all the rest of my teeth from going bad. The only other tooth I have that is "compromised" is a crown on the opposite lower side which would also be a breast tooth if the info I have on "meridian" teeth is correct....
YES, Deanna the meridians "they" are talking about are the same as acupuncture so maybe if someone has a chart they can clarify this. Either way...BC meridian or not...I had constant infection in that root canal and I decided not to keep it festering no matter what it does or does not affect. I know it was drastic and maybe even reckless...but remember I am one who cut off a perfectly good breast. A tooth compared to that? Well, now a 2nd tooth...oh, where will it end? My husband has just had 2 root canals and one is still infected even after the completion of the procedure.
RESEARCH XYLITOL.....organic...made from birch bark in USA......not from China and other untrustworthy places where it is made from GMO corn and other things.
I would love to know more about xylitol and anything else to preserve teeth:):):)
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Karen - Like DesignerMom, my PCP has been great about ordering tests for me, like D3 and even a baseline bone density scan. As for a helpful estrogen test, LabCorp, a national lab, offers an RIA Estradiol, Sensitive test #140244. that has a 3 pg/ml sensitivity. To find a lab near you, check out https://www.labcorp.com/wps/portal/insurer/findalab . Your PCP can write you an RX is your Onc wont
Also , since my earlier question seems to have gotten lost in the pack, can anyone help me with some questions on Iodine? I'm planning on taking Iodoral to help lower my estrogen levels and 50mg seems to be the magic number. But so many sites talk about 1.1mg daily being the safe amount and anything higher causing toxicity, how can there be such discrepancy ? What is a safe level to start with but which will still have an effect on estrogen levels ? Is there any real/permanent downside to simply starting with the 50mg and lowering it if I have bad side effects ? (Since, I'm not taking it for thyroid issue, I'm planning on skipping a TSH or Iodine Loading Test.) Any other advice ?
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Wow you guys have been busy. I love you all but cannot keep up with double posting. We have been spending a lot of time redoing our website to make it easier. I am loving it. In response to some of your questions-When I had my root canal out, it was totally rotten, even though my regular dentist had missed it. They are not taught how to look for infection. I went to 3 holistic dentists for opinions before pulling it when they all told me this tooth was killing me. I went to an irridologist who told me there was a connection with teeth and health. I did not tell him about my bc, but he told me I had "Chest issues". His chart showed a direct meridian link to my root canal tooth and my breast.
Karen-You asked the million dollar question (as in how many millions does AstaZeneca make on getting us to take arimidex). I asked my onc too, three years ago why they would prescribe such a heavy handed drug for a stage one tumor without checking my hormones. She said they did not do that. Then I finally said I do not do drugs. They were quite po'd with me because I had consented to being in a drug study, before I heard about the side effects. They did not like me backing out. I heard they get 10's of thousands for every person in the study.We get nothing of course.
I have started research on xylitol and it sounds like great stuff. Usana uses it in its toothpaste instead of flouride and there is a doctor I listen to on the radio (healthquestradio) on Sat. morning while I walk who is always touting xylitol.
I love whole foods, the minute they go pink, I am out of there. I thought the health care program they promoted to employees sounded fantastic, but the CEO was blasted for not backing obamacare. His employees are covered well and have lots of choice. Why should he want anything less for them? That aside, I am looking into getting them involved my thinkbeyondthepink movement locally. I hope it works and I hope you will all help me to get this idea to spread.
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I started with 12.5 mg and gradually increased to 50 mgover a period of 6 to 8 months
Just had my Iodine loading test and I was told by Dr, Flechas to stick with the 50 mg as I have reached post loading of 42 mg toward an ideal of >44 and my post saturation is 84 when I am looking for >90 . Since I have only been at the 50 mgs for 3 months, I guess he thinks my levels will increase and that my bromide will gradually decrease...My bromide is 67.20 but should be <12 and my flouride is 3.57 when it should be 1.54 - 2.06.
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dlb-Pharmaceutical reps are still influencing doctors. I have a friend who worked for Phizer as a rep. She told me they use to bring 'gifts' to the doctors, ipods and all sorts of expensive stuff. I think they try and hide this practice now, but it still goes on. Last month when I was at the oncologist with a friend, the drug reps had brought lunch for the staff! Does anyone else see this as unethical? Ultimately the doctor should not accept gifts of any kind to infleunce him/her.
Xylitol-Beware I thought I had found a great sugar substitute, but upon reading futher I found that many dogs had been admittted to the vet after swallowing xylitol and having severe reactions from it. I thought if it can do that from swallowing a pack of gum, I don't want it in my body...
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Hmmmm... Sounds like the tide may be starting to turn! Look at these quotes from Susan Love about Breast Cancer Awareness Month!
"You see this message that the best prevention is early detection, but that's not prevention, that's finding a cancer that's already there."
"We're in this mind-set that cancer will be a chronic disease, but it doesn't have to be," Love says. "By shifting the focus from early detection to prevention, we can be the generation that stops it."
http://www.latimes.com/health/boostershots/la-he-breast-awareness-month-20101004,0,6326008.story
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Omega 3's- Everyone looking for a good source pelase consider this rather than fish oils such as Krill. It is devastating to all marine life. Here is a product description:
One of the best properties of Vegan Chia seed is that it contains a high amount of oil. In fact, it is known to be the richest vegan source for the essential omega-3 fatty acid, alpha linolenic acid. Chia Seed contains up to three to ten times the omega-3 content of most normal grains and contains at least twice the content of protein in most grains. Omega-3 oil, along with other essential fatty acids, help absorb fat soluble vitamins, including vitamin A, D, E and K. Vegan Chia seed oil is also found to be an excellent source of linoleic acid, which is an essential fatty acid the body can't manufacture on its own. Unsaturated fatty acids are important for the respiratory process of vital organs and help make it easier for oxygen to be transported by the blood stream to all organs, tissues and cells. These essential fatty acids aid in the maintenance and lubrication of all the body's cells and are able to combine with cholesterol and proteins to form the membranes that make up the structure of our cells.
I buy my supplements online from Web Vitamins. They offer many different brands and their prices are great. Here's the link for the brand of Chia Seed Oil I'm buying: http://www.webvitamins.com/product.aspx?id=37604
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