natural girls
Comments
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Deanna, I had a similar reaction from my onc last year when I told him I ditched tamoxifen. I was apprehensive about what he would say. He was nonchalant, so much so that I wondered if he really has any faith in it at all. I didn't get any revised risk of recurrence, no recommendations that I take something else. That sort of surprised me and kind of made me wonder if I should've suffered through the 26 months that I did take tamoxifen. I mean really, if a doctor is going to stop short of prescribing a pharmacuetical because there's no guarantee it'll work or not cause problems, good grief, what drug passes that test???
All I know is I have a lot more faith in taking iodoral than I ever did in taking tamoxifen to protect myself from a recurrence.
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Hi Everyone,
I purchased a Chi Vitalizer Machine today, used it for 15 minutes as instructed and I really enjoyed it. I used the lowest setting which actually provided more total body movement than the higher settings. After using it I feel invigorated as if I took a very brisk walk or a swim but without the soreness or being out of breath. I also feel ready for a good nights sleep. The only drawback for me are the footrests. They are a bit hard so I had to put a towel over them. Other than that, so far so good.
As always,
Grace
"Once you say you're going to settle for second, that's what happens to you."
John F. Kennedy0 -
That's why I'm taking i3C instead of the DIM. The product I buy is called Meta 13C and it is made by Metagenics
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Making way
How long have you been on the 13c? Also I did not follow why you chose one over te other. Since I am about to go on DIM, I am very interested in what you have learned.
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Making way, I use the metagenics brand of I3C too, because of the soy issue. You have to get it from a doctor. I do like the idea of alternating with the DIM. I figure they both have pluses and minuses, so maybe this way it will all even out.
You guys made me chuckle that your oncs did not object as much as you thought they would, just as mine did. I really wonder if they believe in these protocols, or if they follow them because they have to.
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Vivre,
I found you some DIM without soy. It makes no sense to me why they would put soy in DIM. DIM is supposedly regulating estrogen. So add a phytoestrogen in the mix. HUH?
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WOW that is the best price I have seen as well
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Vivre,
I think docs just follow these protocols because of the "guidelines." When my surgeon's wife had a 2 cm ER+ invasive breast cancer, she did not do hormone blockers or chemo.
This was six years ago. She's fine, playing tennis and looking terrific.
Anom
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Yes, it does look like a good price, and its for 200mgs. I don't keep up with that because I juice those veggies instead.
I didn't know that men over 50 have a problem with too much estrogen in their bodies. I've read about estrogen in the water. They tested the water in Florida when alligators were failing to reproduce because of lack of proper equipment sizeage. Sure enough, too much estrogen in the water. The moral of the story is: Men born today aren't as equipped as their Great grandfathers were. And we were born in the wrong age. Hmmmmmmmm.
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Anom, maybe we should as our doctors, would you take this, or ask your loved one to? Although I doubt they can be honest. There are too many ambulance chasers ready to pounce if they deviate from the standard of care.
Rosemary, thanks for the link. I will check it out. I hope to do more juicing once I get my garden growing and can get fresh produce. We have a totally organic farmers market that I hope to visit weekly this summer.
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Back to DIM and Soy.
Vivre, it does sound like a good idea to "alternate". I am gonig to think about that.
The ingredient on mine says "soy phosphatidyl choline" so Merilee, I think that last ingredient you list is a soy derivative.
Rosemary, I am going to bookmark the one you found. The price is MUCH lower than what I was odering. I am going to email them and ask explicitly about the soy derivative phosphatidyl choline.
Such power of information in community.
Spring.
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Vivre,
I think the doctors lie all the time in order to get a patient to go along with the standard of care. They have to lie to protect their licenses. Ambulance chasers would come after them, as you say.
My own doctor doesn't take the flu shot but he must ask everybody he treats if they want one. Or he could get sued on the low or non-existent chance they died of flu-related disease.
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It is so interesting that several of you also experienced similar, non-argumentative reactions from your oncs to going off Tamox or an A/I. I wonder if the tide is starting to turn, or if they have just given up pushing them on women who aren't open to them.
I had to replenish my I3C a couple of days ago, and inspite or reading up on DIM ahead of time, I stood there in the store having a hard time deciding which one to buy. I finally went with the I3C again, because I preferred the brand they had in it. But I was thinking later that I might buy some DIM elsewhere and alternate.
For those of you taking 13C or DIM, how much are you taking? The DIM I didn't get suggested four 100 mg. capsules for "therapeutic use." I thought I'd read 400 mg. was recommended, but seemed like a lot compared to the one 25 mg. I3C I take. But now I'm wondering if I should be taking far more I3C than I am. Deanna
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Deanna, I take 400 mg of I3C daily (one 200 mg capsule in the morning and one in the evening), so that 25 mg sounds low to me, too. My naturopath agreed with this dosage.
My oncologist was not as supportive as these stories regarding my decision to refuse the Tamoxifen. She pressed me on at least three visits and wrote in her report that I was making a mistake. My radiation oncologist, on the other hand, was more supportive of my choice, but I don't know whether that's his area of expertise, so the support may have less value?
~Stacey
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DIM and soy,
Do any of you know if this makes the soy not harmful to us?
- "Contains phosphatidylcholine (derived from soy), in a form that does not include any phytoestrogens. "
Is it the phytoestorgens that are the things ER+ are trying to avoid from soy? Does anybody here understand this? I would really like to understand this!
Deanna, When I take DIM, I had it in 75MG capsules. I read a booklet and thought I shoudl take around 200. So I was taking 2 capsules, then 3 capsules, every other day. I just reordered in 150, so maybe I'll take 1 capsule, then 2 capsules, every other day??
Spring.
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From Organic Pharmacy - I sent inquiry asking about their DIM and Soy....
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Thank you for your inquiry!
The only DIM product we have which does NOT contain soy is the Douglas Labs
DIM. All of the others contain phosphatidylcholine, which is derived from
soy.For details on the Douglas Labs product, please see:
http://organicpharmacy.org/products/DIM/SKU:DL99598-60XHealthy Regards,
~Your Organic Pharmacy Team0 -
I think that the true statistics on side effects of the AIs and tamox are not really out there. How many of your physicians have reported your side effects to both the drug company and the FDA? I had very severe chemo side effects which my onc did not report. They were all "rare" side effects of the chemo. But if the docs actually reported the side effects of each patient, I believe we would see much higher numbers.
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Spring,
It is the genistein in soy that could give us a problem. The problem being that it was seen in a lab to aid in the growth of a tumor after 6 weeks of daily use. That information is slowly but surely going away...getting buried by other research saying the exact opposite. Since we don't know who to believe, I'll err on the side of caution.
phosphatidylcholine supposedly aids our liver and brain functions but I found that info on places that sell it. Whether or not it contains genistein, I wouldn't know. Maybe the company that sells the pill will know?
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Anyone can sign onto the FDA website and post problems. One of my new doctor work's for the FDA two days a week. I've been talking to him about linking to this site or building a more use friendly site by drugs that we can have open discussions on.
One of the new problems coming out right now is past chemo patients getting mucular degenerative eye disease. He was not a where of so many ladies were not having issues with this.
With so many on the internet there is no reason drug companies don't have good feed back.
Flalady
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Flalady ~ Re. reporting a problem to the FDA... I had tried to do that after I passed out while on Femara, but the way that page is set up, they only want reports if the problem resulted in death or hospitalization, and thankfully I hadn't experienced either! Obviously, there's serious under reporting and a huge information gap when that's the only problems they want to hear about. Deanna
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Call me paranoid, but after reading about how soy is in everything we eat and put on our bodies, I'm sure 'it's all about the money'. I'm not taking my chances. I'm sticking with the I3C. The brand I use is Metageneics. I don't have to get it from a doctor. I got mine from www.webvitamins.com
Their prices are good. Their descriptions of ingredients aren't always accurate though. You need to go to the actual brnad names website to get an accurate detailed description.
We need to create several lists showing what we take and how much. Any ideas how to do this?
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Rosemary44- The report I read showed that the tumor was reduced after 6 weeks, BUT then grew gangbusters after that time and they stopped the study.
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Some how I'm not surprised dlb823. Another failure we can mark up to the FDA and the poor job the continue to do about protecting our health. I will ask this guy again when I see him and let him know what you said. Maybe we should start our own site to report issues?? I would love to see a real powerful site that would make the FDA and pharm companies toe the line!
Flalady
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Hi Ladies! I take 200mg of DIM, I started at 100mg worked up to 200mg and plan on taking an additional 100mg starting next week, to level out at 300mg, my naturopathic MD suggested a combination of 13C and DIM and gave me the name of this one CDG - EstroDIM, its kind of expensive, so I decided to stick with the DIM I take, but its interesting that she said take a combo of 13C and DIM together.
Also, wanted to let you guys know this, one of my brides (I am a wedding planner), works for Novartis who developed Zometa, she knows my story and today I met with her and told her I had declined Tamox, she looked me right in the eye and said "I am so happy you did that, that stuff is toxic!" I starting crying, I don't know why, but I think it was because, here is this doctor who works for a pharm company telling me I made the right choice, weird reaction I know! Plus my onc just shrugged when I told him I wasn't taking it......
Peace out sisters!
Lorraine ox
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makingway,
Then call me paranoid too. I think in a way we're kinda saying the same thing. It's getting harder and harder to find vitamins and such without it. When I do, I have to pay more for them. I had to go to Mercola site for coQ10 and he's not exactly bargain basement. We both share the same thoughts on soy, so I knew he'd be my last resort. I don't know, I got this thing about hexane in my vitamins. I'll go without.
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Fairy49, I would've wept too. My onc seemed so unconcerned when I ditched the tamoxifen. Can't help but wonder if he was doing a little happy dance inside to know I wasn't taking tamoxifen anymore.
Re the FDA tracking side effects, when I read flalady's comment, I thought, yeah, right, as if we'd be telling someone who cares. Deanna's comment is more what I would expect (i.e., they'll take note if someone dies or gets hospitalized).
On a different note, I finally called the FFP labs and ordered my iodine loading test. It will ship next week. I've been taking 50 mg/day nearly every day for five months now, so I'll be curious what my results are.
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Ladies - I have been unable to read the updates from this post and my mailbox is flooded with updates! How do you all keep up? I am sure once I read them all I will have more to post but this is what I have for now.
Mandy1313 - I agree about the side effects. They do not list weight gain, but the most common complaint I hear about the Tamoxifen is the weight gain and how difficult it is to get rid of. They list weight loss as a side effect. LOL - Don't think I have heard many ladies talk about that side effect. Also, my vison was terrible on the Tamox and I have read a lot of ladies having that issue as well, yet it is low on the side effect totem pole. I secretly think they don't report the SE's on purpose.
Fairy49 - Your post send chills up my arm. I have been off the Tamoxifen for 6 weeks now. I was supposed to call my onc after 30 days, but I am not ready to talk to him. Anyway, as I have been telling people about my decision, they look at me worried like I am making a HUGE mistake, which makes me question myself. I know that if they knew what I knew and read what I have read and had all the nasty side effects I had - they may feel totally different. Thank you for sharing that. I have always felt that this was NOT a good drug and that just reaffirms it. My nutritionist said she would never take that stuff unless she carried the gene.
I am still gaining weight off the tamoxifen. I was really hoping that would change. I read somewhere that some people on Progesterone Cream had gained weight vs. loosing it. Has anyone else had this experience?
Also, I cannot remember who posted this, but someone thought they had a sore tongue from D3. I had this same experience and just recently went off it and my tongue is now better. I am going to try to introduce it again to see if the D3 was in fact the problem.
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Spring, my understanding it that is WAS the genistein (which is one of many nutrients in soy) that was the problem in the study you mentioned however they haven't had those results (that I know of) from whole soy. The Warrior Woman book by Dr Christine Horner) which is all about natural deterrents for breast cancer, etc. does NOT steer people away from soy. Her book says that the genistein is beneficial when eaten as part of whole soy, not broken out. She quotes studies that says it promotes apoptosis by inducing production of a tumor suppressor protein, PTEN. Also that it works synergistically with I3C and omega 3 fatty acids. Also read up on the 3 kinds of estrogen. The "weaker" estrogens including phytoestrogens decrease the risk of cancer b/c they slow down cell division and block the effects of the stronger estrogen (like estradiol). She sites a meta-analysis published at Johns Hopkins and by the Journal of national cancer institute in 2006.
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Susers! It was me with the sore tongue! I stopped D3 for a day and my tongue felt better, damn it! Didn't want it to be that! I decided to take very other day, and so far that has helped! See if that works for you!
Lorraine ox
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OMG, Lorraine! That story about your Novartis bride is incredible! I can't believe someone who works for the company would be so outspoken about one of their products! Just think how bad it must be for her to say something like that to you! Makes me wonder if all of its toxic effects are even documented! Deanna
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