natural girls
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Hi, ladies ~ I just wanted to share a couple of things I got out of my onc at my 3-month check up today. Since I didn't have my usual list of questions, I decided to ask him if he thought that I was possibly being foolish for having abandoned Femara and declining to try another A/I. His response, with a big, open smile, was, "No, I don't think it's foolish at all." I told him I was now using DIM and asked him if he was familiar with it, but he just kind of shrugged, so I wasn't sure if he knew what it is or just didn't want to debate its merits with me.
Then I told him that I have learned that some women are using natural progesterone to balance their hormones, and he shook his head and said with a laugh that he didn't know of one onc in the entire country who would recommend that. I asked him if it was true that they used to RX progesterone for bc prior to Tamox & A/Is, and he said, "Oh, yes -- and really heavy doses -- and it would work -- for awhile." He went on to say that prior to chemotherapy, all they knew to do was hormone manipulation, and that they used to put men with prostate cancer on estrogen, because it was all they had -- but that medicine has come a long way since then, and that younger oncs don't know anything about that chapter in cancer tx.
Anyway, I just thought that his comments were worth passing along.
Deni ~ Any more news? Did your DH talk to one or more of the oncs he knows? (By the way, my DH is also with a very large medical company. Wouldn't it be ironic if it was the same one?!)
Althea ~ Thanks for posting about Kris Carr. I've somehow missed her website, so was really glad to see it and get on their email list. Deanna
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Hi Deanna - yes, my DH (? I'm not sure what that stands for exactly but I am assuming you mean my husband!) talked to an really high up oncologist at work. She was mystified as to why they would have ordered the test to begin with being that my hormone receptors are negative. She had never heard of the test being used for ER- tumors before. I am actually going to make an appointment with a new oncologist that I found who is very open to alternatives. I want to tell him my long, sorted story and see what he thinks about everything. From what I have found about him, he is a top authority on cancer and alternative treatments. So, I am very curious about meeting him.
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I went to see my ONC today to get my results from the TailorX Study and he officially told me my score was 9. He then started to give me the low-down on Tamoxifen and the SE's. He also mentioned 2 SE's that have me in a tailspin even though the % that I would ever get leg thrombosis and/or blood clot are very low. I asked him if he thought taking DIM was a good idea and he asked me if I had extra money to spare... I then asked if he thought I should up my dosage of Vitamin D and he asked me if I wanted the problem with having too much calcium in my bones (or something like that). By that point I was totally discouraged and my mind shut down! I'm at a loss for what to do. I so wanted him to tell me that taking those natural products would help me but I guess I was asking for too much. I suppose some doctors are just not into alternative medicine - maybe I should ask Dr OZ !
So here I sit with my prescription for Tamoxifen not knowing what to do....
Terri
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Terri,
Too much calcium in your bones. I guess he's not up to date on all the vitamin D research, and he should be. It's true, D will help you absorb calcium, but not as much as we think otherwise we wouldn't be having so many osteopenia reports coming from people taking large amounts of D.
Even my Onc who believes in nothing other than the holy grail of modern medicine suggested I take D3 a couple of years ago. I was already taking it a year before he suggested it to me.
I know you feel like you got no help but that's the way it is out there.
Taking tamox is what you should be focusing on, making your choice one way or the other. A couple of us were scared mindless when it came time to take arimidex, and 5 years went by and nothing happened to me. It's a tough decision for you.
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Rosemary, I take 2000mg of Vitamin D daily. I also take 1000mg Glucosamine, 1000 mg Vitamin C, a multi vitamin, 1200 mg calcium, synthroid (for my thyroid), 6 blueberry pills, 4 green tea pills daily. Add to that list Tamox, DIM, COQ10, and Melatonin, I won't have to eat for the rest of the day...lol !BTW, I did fill the prescription for Tamox today
I'm wondering if you experts could tell me what pills I should be taking at the same time and maybe how to space them out?
Terri
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I have been checking this thread for awhile now and have been embarrassed to ask....what is DIM? I just completed chemo and ready for radiation next. They want me to go on Femara since I am post menopausal and I have a lot of resistance to that so am looking for alternatives. Also, what is being said about Iodine? Patti
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Terri - I took tam for 2 weeks and found it to be HORRIBLE. I was not going to live my life feeling that way. You may do just fine on it. Have you checked out breastcancerchoices.org? It has a lot of valuable info.about tam.and supplements. Good luck with whatever you decide. I'm taking dim.calcium glucorate, idoral, green tea, d3, b complex, and more!!!!! The more I read about calcium the more I don't like it and I'm not so convinced about a multi either!!!!
Patty
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Terri, I too have been in a quandary over all this natural vs. tamoxifen stuff. In the end, I decided to stick with the tamoxifen for a year or two, just because of what your onc said. I realized that all these natural supplements would cost me an arm and a leg and tamoxifen costs me nothing. I go for the transvaginal ultrasound next month, so I'll be keeping an eye on that uterine lining. I also do take fish oil, which hopefully thins the blood and helps me to avoid blood clots. In addition, I'm taking curcumin, multivitamins, drinking green tea, and have cut way down on the alcohol, red meat, dairy, and bad carbs. And I'm committed to working out regularly.
So far, my side effects with tamoxifen are the same as what I was having with perimenopause, only more intense. I've been on it since November, and actually went off it recently for 6 weeks, because the hot flashes had become too intense for me to handle in this heat and I was having some problems in the sex department that were getting me down. The hot flashes did decrease in intensity and frequency, but never stopped, and now that I'm back on the tamox for about a week, I feel them getting worse again. However, all of a sudden this week, all of my MOJO has come back to what it used to be way before breast cancer and perimenopause, so I'm happy about that! I'm not quite sure why this has happened either, although I do have a few theories. If anyone has this same problem and wants to know more, PM me, as I feel like I'm getting into the TMI area here, LOL.
I talked to my Onc about all this last week and he told me to try some tincture of rhubarb for the hot flashes. He also brought up the idea of switching to AIs once I become postmenopausal, but I told him I DO NOT want to ever take those and he just laughed and said "Oh, why are you doing this to me?"
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Terri,
Good, I'm happy to hear that you made your decision. Did you take your first pill yet? I have a question about the calcium type your taking? What kind...citrate..carbonate? Are you taking magnesium?
Vitamin C is water soluble, so dividing up the doses is better, or get a timed release. Calcium @ 500 mgs, is taken with vit. C & D3, wait 5 hours and do the same thing again. In between, you take fish oil and coQ10 together. That's pretty much all I take unless I get problems, then I add other things as I need them. Looks like you have a nice list and others might have more.
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Patty: So sorry to hear about your SE's. Hope the natural stuff works out for you..it can't hurt, that's for sure!
Rose: Glad you got your MOJO back! DH must be really happy. I can't say that I have any MOJO at the moment- my head really isn't there right now. But every now and then I get a twinge..ok TMI. I spoke to my ONC yesterday and he said that my Estrogen level was over 500! My other 2 numbers were low. So technically, I'm not in meno. I did have HF's about 6 or 7 months 15 times a day for about 2 weeks and then they just stopped.....STRANGE.I'll let you know about the SE's when they finally start creeping up on me!
Rosemary: I haven't taken the first pill - will do that tonight. The calcium pill I'm taking just says Elemental Calcium Mega Cal - high absorption- complex of carbonate, citrate, malate etc.etc. I'm bummed because the one I was previously taking had Magnesium in it and I guess I grabbed the wrong bottle when refilling and didn't notice until you just asked me.
Terri
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Hi everyone,
just wondering if anyone has heard of or is taking zeolite?
take care
Kathy
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BUMP
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Terri,
That's good that you got the wrong calcium w/o magnesium. We're suppose to take it separately anyway...1-2 hours before taking calcium. I know they're mostly sold together, but I found a little known research paper about taking them apart. Calcium overrides magnesium, Ca takes over so to speak, and we need mg too to do its job.
About the carbonate Ca, it doesn't mix with synthroid too well. It will either make the synthroid too strong or too weak, I don't remember which. I gave up trying to find the right ca, mg. I just take the pills now in citrate form and end it. I'm sure there's better ca out there but I'm tired of searching and trying different stuff.
Kathy,
Yes I heard of zeolite, but it's only effective in drip form per the research. Orally, it doesn't do anything.
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Hi, ladies. Okay, what is D3? I'm taking 1,000 mg of vitamin D, but that may not be enough, right? I am on DIM now and all the other supps I've been doing for a while: Fish oil, probiotics (for IBS - it is FINALLY working), biotin, antioxidant mix of E, C and all kinds of other great stuff we're supposed to have, D caps, the DIM twice day and a hair-growth formula of biotin, zinc and one other thing that's important. I haven't started on iodine yet. Do I need the I3C or whatever that is?
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Thanks, Meg. Haven't had the levels checked yet - but I will mention it to the new onc I'm meeting with this week. So, I can get the I3C at the health food store also? Good to know!
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You know what, I bet this is the same stuff with a different name that the holistic doc I saw wants me to pick up from him. Way more money to buy from him, so I will get some this weekend at the other store. Cool to know!!! As usual, you have answered my questions!!
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Ivorymom,
I was told that D3 most closely resembles the benefits of sunlight which is what we need to combat breast cancer.
Roseann
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Chelev-It does take a while for IBS to subside. I could not believe the difference once I cut out dairy and baked goods, including bread. Now whenever I eat that stuff, my stomach really lets me know it. You might also add digestive enzymes. They are essential to good health. In fact, everything starts with the gut. The key to good health is a healthy stomach. As far as vit d goes, there have been a lot of discussions here about it's importance. You might want to search for one of these threads and look at all the information. Vit D is the one thing that main steam doctors have finally taken seriously because there is so much proof that it is essential. There is a link to low D levels and all kinds of problems. However, you do need to look for Vit D3, as that is the vital one. I had mine checked after treatments and it was 23. My chiro put me on 6000 IU a day. It took 6 months to get it into the 40's, It took another 6 months to get it over 100, which is a bit high so I have backed off to 4000 IU. I use drops in my tea of 2000IU each made by Carlson's. One bottle lasts for months so it is cost effective.
I3C is the active ingredient in DIM. DIM has other ingredients too, as does Miomin, which is what I take. My compounding pharmacist told me that Miomin seems to metabolize better in menopausal women like me. They all do the exact same thing that Tamox does, which is to lower the hormone receptor ratio. They do not get rid of estrogens the way that the AI's do, and they do not have any side effects. We have a couple of discussion threads here on them too. Search them out and you will find lots of links to studies on them.
It is important to have a urinalysis or saliva test before starting anything so that you can see what your levels are and see if anything changes. You might have to search for a doctor who believes in doing hormone tests and understands them. I found a chiro and then a former obgyn who now only does hormone therapy. By the way, Vit D is a hormone. A hormone work up will also show your cortisol, DHEA, Progesterone and a breakdown of all the estrogens. These numbers are important to know.
Please checkout the iodine/thyroid thread for all the imformation on the link between iodine and breast cancer. Threre is too much information to rehash it all here. Again, you need to find a doctor who is up on this and can help you interpret your tests. No one should just start taking supplements without knowing your own body chemistry. The goal is to put everything back in balance. The imbalance is what caused our cancers to grow in the first place. We need to learn as much as we can about our own chemistry and adjust it. When you get it all working better, you will feel a huge difference, but the tests are still a way to reinforce what you are doing is right. When doctors tell me that doing all this is just making expensive pee, I can look at how my tests have improved, as proof that they work! Although I no longer go to any of my cancer doctors, I plan to eventually send them my test results. I am hoping that it will make them think a little and help other women, instead of just reach for the script pad. But maybe I am just wishing on a star.
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Thanks so much Rosemary, there's alot to learn in all this. I guess I should start by finding myself a Dr that thinks "outside the box" and get some tests done. I'm also very interested in getting of the Synthroid and replacing it with the dessecated.
Terri
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thanks for all of the input and info, Vivre!! I did find a doc who does hormone testing - it's his specialty, but as I'm still working with reduced hours and pay (hope that changes sometime soon!!), and he doesn't take insurance, I'm on my own for payment and very little reimbursements, so he did give me some things to start with, like the DIMension 3 he sells. I'm hoping sometime later this year, maybe in a couple of months, I'll be able to afford the tests and get completely moving in his direction. He's been helpful, but can only do so much until I get the tests done.
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had my 6 month check up and everything is fine, hi to all. good to catch up on all the comments.
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amberyba ~ Congrats on the clear check up!!!
chelev ~ Just wanted to throw something out to you re. IBS, which I'd suffered from for years. In addition to white flour products and white potatoes, I figured out that oil/fat was a huge factor in setting off those attacks, especially when combined with the flour or the potatoes. Fried chicken or fish or a few french fries, for example, were the worst, and would set off a horrible attack. After I figured that out, I was able to greatly reduce my flareups. And now, since maintaining an extremely low-fat and 95% gluten-free diet, I've had virtually no problems at all, includring during chemo, which had concerned my onc upfront. Also, back when I was having flareups, I found that probiotics helped for awhile, but at a point they seemed to backfire and cause even greater problems. One product that also helped me in the past is something called IBX, which you can find in any good health food store or nutrition department.
Just thought I'd share this in case you haven't made the oil/fat connection. And for some reason, olive oil and grapeseed oil (used to saute or on salads) don't seem to bother me. Deanna
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I have yet to get my tests for the lumps I have. The radiologist wanted my previous films. I go in on tues for the mammogram, but my report says that due to the dense breast and history of b/c they recommend an annual MRI. So after reading this, why the mammogram? I already know there is a golf ball lump there. I DON'T want the exposure!!!
The anxiety of getting this extra exposure is driving me insane. The tech. said I can ask the radiologist if we can skip it, since my sister with BC, it missed with mammography, but that she didn't think he'd go for it.
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Thankyou rosemary44
Kathy
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Hi gscott- I don't blame you for not wanting to do the mammogram. They did so many mammograms on me during the diagnostic process I think I glowed in the dark. But, my naturopath now recommends that I don't do any more mammograms and monitor by ultrasound and MRI. You may want to do it until you know for sure what you are dealing with. Although with a lump that large, it is probably not good to swish and squeeze it. But, I think your radiologist is going to insist on you doing it.
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gscott ~ Since it looks like you've never actually been dx'd with bc (and I hope you never will be), I'm wondering if perhaps they need a concerning mammogram to justify an MRI to your insurance company. As you may know, insurance companies are notorious for refusing to pay for these very expensive procedures unless you have a confirmed dx.
If that's not what's involved and you either know your insurance will pay or you're prepared to pay for an MRI out of pocket, then by all means, try to refuse the mammogram on the grounds that it won't show anything more than the MRI will show. Afterall, it's your body, and thay can't make you have a test you don't want. Deanna
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gscott, if you go to a radiologist, they will want a radiological study aka mammogram. You might have better luck getting a different test if you see a breast surgeon first. Especially if you live near enough to your sister to see her breast surgeon.
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I agree with going straight to a breast surgeon. I didnt realize this option was avail and i had two biopsies 3 mammos an ultrasound and an MRI before seeing a surgeon. Also ive always been told my breast tissue was dense so i should have been getting ultrasounds. each dx test, MRI, ultrasound and mammo detect something different. For instance, the MRI showed absolutely no lymph activity but the ultrasound definately showed it. Also the surgeon can justify whatever tests you need. In looking back I wish i would have just had the lump taken immediately and the instead of re examining it and having it biopsied in a few places. best wishes!
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I will never do another mammogram, no matter what they tell me. I have had 3 thermographs now, and I love them. They are safe, just as effective as mammos. If anything looks suspicious, I will go right to the surgeon who can do an ultrasound, and if he deems necesssary, he can ask for an MRI. The only reason therms are not more accepted is that mammos make a lot of money. When more of us demand this cheaper and safer alternative, they will become the norm. Just like with mammos, they are only as good as the person reading them. There in lies the problem. Too many doctors are not trained to interpret them. But as I said, when we start to demand it, it will happen. If men had to have their vitals smashed and radiated, THEY would have insisted on change eons ago. We need to do the same thing.
Also, Thermography can see in dense breasts, what mammos cannot, and are thus better for younger women. I also like the fact that my doctor gives me a computer image of my tests so that I can compare them myself for any changes.
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I am really interested in thermography but I think the jury might still be out on them. My radiologist said they aren't as accurate as mammograms...and you're right that there aren't many drs who can read them at this point. Hopefully that will change.
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