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Topic: Instead of Tamoxifen...

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Nov 19, 2011 11:45AM

FLwarrior wrote:

I would like to hear what kind of sucess you have had with tamoxifen alternatives.  Who has tried I3C?  or DIM or DIM-plus? Are there other alternatives?  How much do you take?  How long have you taken it?  Thanks for your feedback.

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Posts 1 - 21 (21 total)

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Nov 20, 2011 12:52AM dlb823 wrote:

FLwarrior, I've used I3C for 2 years.  My estrogen is extremely low, but I'm also post-menopausal.  I tried both DIM and Grape Seed Extract prior to settling on I3C, but both of those were too strong for me.

The best advice I can give you is to find a doctor who will seriously monitor your estrogen levels. My PCP did blood tests, but I've recently started seeing a naturopathic doctor, and she uses a 24-hour urine test, which is much more accurate.    Deanna

"The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Nov 23, 2011 12:51PM , edited Oct 13, 2013 05:31PM by FLwarrior

This Post was deleted by FLwarrior.
FLwarrior Dx 1/31/2011, ILC, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Nov 23, 2011 01:38PM dlb823 wrote:

I'm so sorry about your job loss and resulting health insurance situation.  I hope that didn't in any way arise because of your dx.  If it did, please seek legal advice about at least getting your health insurance back!  As you probably know, letting someone go because of a health problem -- even if it's not expressed as such -- is totally illegal and can be prosecuted.

I can't begin to advise you on whether or not you need to be taking Tamoxifen, but if insurance is the major issue, perhaps you could find a resource to help with the cost?  I don't know if the drug manufacturer ever helps out, or if there's some sort of non-insured program in FL for which you qualify, or if maybe a hospital social worker can point you towards appropriate programs, but please do whatever you must do to to get the follow up care and choices you deserve -- including starting a thread here to ask for input from others who might have already gone through what you are. 

As far as my experience with natural estrogen modulators, my joint pain was unbearable on DIM and grape seed extract.  I still have a moderate amount of it with I3C, but it's not as debilitating. But my post-menopause estrogen is extremely low anyway.     Deanna  

"The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Nov 23, 2011 02:43PM , edited Nov 23, 2011 03:41PM by princess123

Flwarrior, I've been using Calcium D Glucarate. Some women use that and DIM. The best thing for you to do is speak with an ND. As you know, they are qualified to help you determine which supplements are right for you.

In the meanwhile, here is some info about DIM and 13C. Michael A. Zeligs, M.D., "All About Diindolylmethane" (http://www.dimfaq.com/index.htm). I hope you find a job soon.

Hugs 

Sharon

ETA: Here is some info about calcium d glurate.

D-glucarate is a natural subtance is found in apples, oranges, broccoli, spinach, and Brussels sprouts. To detox the toxic estrogens your liver joins it to glucoronic acid.  D-glucarate can inhibit an enzyme produced by gut bacteria called beta-glucuronidase that can break this bond and allow the estrogen to be recirculated from the bowel.

Also, you'll find lots of info about supplements and other things on the "Early Stage Natural Girls" thread.

"Be patient. God is using today's difficulties to strengthen you for tomorrow. He is equipping you. The God who makes things grow will help you bear fruit." Max Lucado
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Dec 1, 2011 06:52PM , edited Dec 1, 2011 06:53PM by peggy_j

Re: lack of Rx coverage, some drugstores offer discount programs for seemingly unlikely groups. Walgreen's, for example, offers a discount if you're a member of AAA. I'd take Deanna's advice and check to see what options are available for all kinds of help. (maybe via you local cancer support center? Or your state's consumer insurance board or ?)

Dx 2/2011, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 12, 2011 04:26AM pinkcandy001 wrote:

I am sorry that u have had such a bad time.  I also had a terrible time so u are not alone.

I was shoved in for my op, no notes were written up, saw no doctor, sat around on the day of op from 8.00am - 4.00pm, shunted upstairs to the ward. I was terrified, alone, hungry and felt sick.  Briefly saw the someone before going down to surgery.

Bad onco/hospital staff, breast nurse had an angument/screaming at me and very abusive over the telephone because i asked for my path report, because i didnt get on with my oncologist.  I am now having to chang hospitals because the staff are so bad.  I am out of work, severe reactions to all treatment, two kids and have had to do it all on my own without any help.  Live in a bad area, and because they know i have cancer, have been intimidating and harrassing me I have learned to stand up for yourself, never NEVER think its not going to be alright. Have suddenly realised that not ALL human beings are nice, and have a totally different outlook I appreciate the people who care, and treat myself to anything I can afford.  Also there are alot of support groups that will help with financial help.  I found out too late that I was intitled to a grant to help after my op, and also an emergency fund for any utility bills, do u have that support in the US.

God bless, and we will help each other all we can.

Pinkie

Dx 10/3/2010, IDC, 1cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Dec 12, 2011 04:27AM pinkcandy001 wrote:

Sorry that was for FLwarrior.

Pinkie

Dx 10/3/2010, IDC, 1cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Jan 13, 2012 01:58PM bakersm wrote:

Thanks, this has helped me also.  I'm so concerned about taking tamoxifen.....I  just keep asking myself there has to be a better alternative. 

Dx 9/13/2011, 1cm, Stage I, Grade 3, 0/4 nodes, ER+, HER2+
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Jan 13, 2012 03:37PM Carola32 wrote:

I've chosen not to do Tamoxifen either. My radsessions finished late november. Currently, I take grape seed extract and eat large amounts of vegs (especially cruciferous) daily (approximately 5-6 cups). As a snack I have cabbage for instance, I love it! Also, every other day, I take a supplement called Clean Greens, it contains Spirulina, kale sprouts & wheat grass juice (not only though).

Eager to conceive a longterm plan for myself, I'm of course very curious about your experiences. I'm considering DIM or IC3 or/and Calcium D-Glucarate, the goal being to reduce bad estrogen. Is there anyone who takes several similar supplements at the same time? And what about the other supplements based on estrogen lowering plants? Would the consumtion of many of these be overkill or maybe even dangerous? There is apparently a risk for hypothyroidism when consuming 'too much' cruciferous vegs, which makes me very fond of my seaweed; wakamé, kelp, to counterbalance any iodine deficiency. Sometimes, if I feel tired I take some iodine.

Since I've been eating organic & an 'anti-estrogenic', I feel so much better. Before, with my excess estrogen wreaking havoc in my body, I always felt nastily bloated, had excess bellyfat, a puffy face, moodswings and trouble sleeping. It wasn't the chemo that made me lose all those extra pounds, I'm sure it is my diet, because I'm still losing weight in the 'right' places. And I'm full of energy on my good days. This makes me believe I'm doing something right and keeping the excess estrogen at bay. But maybe that's not enough.. Like Deanna said, why not test our estrogen levels, I'm still quite amazed my onc prescribed all kinds of urine & bloodtests in four months, save estrogen level testing..

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Jan 13, 2012 07:17PM FLwarrior wrote:

Pinkie, I hope that you are doing better.  Did you get to change hospitals?  I hope things are better for you.

My good news is that I started back to work 2 weeks ago.  Very thankful to land a job in this bad economy.  Hopefully I will be able to see a ND in the near future. I want my hormone levels tested and treated with natural supplements.  I took tamoxifen for 2 months, but I stopped it because it gave me the worst case of depression.  My onc did not test my hormone levels, just "pushed" tami.  I won't be seeing him again as he has moved away.

bakersm, Are you taking tamoxifen, now?

Carola how much grape seed extract are you taking?  Is Clean Greens a capsule or powder that you use to make a drink? 

FLwarrior Dx 1/31/2011, ILC, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 14, 2012 03:53AM Hindsfeet wrote:

This thread is interesting as I too am looking for an alternative to tamoxifen. I hate the idea of ridding my body of needed estrogen. I am looking at right now another primary doctor who works with a naturalpathic doctor. Whatever I end of doing I want to do it under a naturalpathic and my primary doctors care...and of course oncologist.

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jan 14, 2012 09:44AM BarbaraA wrote:

I take grape seed extract, DIM, Calcium d-glucarate and myomin. So far so good.

Sometimes you're the bug and sometimes you're the windshield. Dx 4/30/2010, IDC, 1cm, Stage Ib, Grade 2, 1/4 nodes, ER+/PR-, HER2- Dx 11/25/2014, IDC, Stage IV Hormonal Therapy 11/25/2014 Aromasin
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Jan 15, 2012 05:45AM Heidihill wrote:

 Carola, you are right about the thyroid effects of cruciferous vegetables. I would think some supplements have similar effects. One summer I took a small daily dose of broccoli sprouts and a new node appeared on my thyroid on my PET scans. Gave me a fright but it was benign. I've stopped the sprouts and drastically reduced the broccoli, while hoping maybe other stuff I'm doing can keep the mets at bay. As for checking estrogen levels, Tamoxifen doesn't actually reduce estrogen but binds to estrogen receptors and prevents the action of estrogen in breast tissue. It is a selective estrogen receptor modulator (SERM) which means it can also activate estrogen action in other parts of the body. In this way it is beneficial to the bones and lowers cholesterol levels.

Dx 8/2007, IDC, 2cm, Stage IV, 2/19 nodes, mets, ER+/PR+, HER2-
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Jan 15, 2012 06:05AM Heidihill wrote:

http://www.livestrong.com/article/176258-how-to-eliminate-estrogen-dominance/

Some estrogen lowering tips. I think the most important are diet and exercise (quotes below)

Eat a healthy diet rich in fiber, one that contains plenty of fresh fruits and
vegetables. This helps maintain a healthy digestive tract. According to Dr.
Christiane Northrup, M.D., estrogen is excreted through the bowels, so it is
important to keep the bowels moving to prevent the re-absorption of
estrogen.

Increase exercise to maintain a healthy body weight. Estrogen is stored in body fat.
According to Dr. Ronald Hoffman, aerobic exercise can help reduce the production
of estrogen in the body. A brisk 30-minute walk, jog, swim or bike ride at least
three times per week can provide the aerobic exercise needed to help reduce
estrogen levels.

I don't know about the alcohol part, red wine could be the exception (according to latest research news). I know less about progesterone creams so ask your oncs. As for fiber, maybe that's why fermented wheat germ extract is good?

Dx 8/2007, IDC, 2cm, Stage IV, 2/19 nodes, mets, ER+/PR+, HER2-
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Jan 15, 2012 06:05PM Carola32 wrote:

FLwarrior,

I take between 20-30 drops daily of grape seed extract, 10-15 in my hot water with squeezed lemon the first thing I do when I wake up (30 drops is 30 mg of vitamin C & 9 mg of bioflavonoids it says on the bottle). Maybe there are 'stronger' doses available on the market, but I started out with this one, and since I find I resist better to colds, and I don't develop candida like before I stick with it. It also works for blemishes & pimples when applied directly on skin, atleast I find it does. The greens I take as supplement is in capsuleform, I would have preferred powder though. In Sweden this christmas I finally found wheatgrass in powderform. In the US and Canada it's so normal with wheatgrass shots, but in France, there's nothing! I also grow broccoli, wheatgrass and cabbage sprouts. Delicious with eggs on some hard rye bread :-)

Heidi, I saw a study somewhere saying if one ups ones iodine intake, while eating cruciferous vegetables, there's no health risk as it 'evens it out'. I will try to find the paper. It's interesting that you experienced nodes on your thyroid, what a scare it must have been! I will look into this further, because I feel good when I eat my broccoli, cabbage, cauliflower & sprouts. I've spent my life eating very, very badly, if I ate at all, so diet is very important to me now. 

I'm aware Tamoxifen is a SERM, and that it doesn't 'lower' estrogen per se, that's the thing; it increases estrogen production elsewhere like you pointed out, Heidi, in the endometer for example, and everyone knows about the risk for endometrial issues while on Tami I hope.  Tamoxifen is beneficial to one's bones if one is menopausal, my onc explained. Anyway, I have my reasons not to take it (I'm a flight attendant, and the risk for blood clotting was to great for my radiotherapist to be ok with me taking it, which I wasn't anyway :-) ). It would have been a different story had I been in a more advanced stage with a high risk of recurrence. 

I agree to the fullest concerning fiber intake & the importance of good transit. Today, I'm a real clockwork, before I was lucky if I went two times a week! Everything we eat & drink (and breathe and get exposed to of course) have consequences. It's so important to evacuate by going to the toilet (not so glammy but the truth), exercizing, sweating, detoxing your liver...

Sorry for my English, but it's midnight in Paris, so I bid you all good night! 

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Jan 19, 2012 02:54AM Mandalala wrote:

I am trying to decide whether or not I'll stick to Tamoxifen, do nothing or try an alternative. With my diagnosis, doing nothing actually seems OK (89% chance to be alive in 15 years with or without Tamoxifen, according to cancermath...). But I'd like to make an informed choice, so: those of you who use DIM, grapeseed extract or other alternatives to Tamoxifen, do you have side effects? If so, what side effects?

Dx 9/13/2011, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jan 19, 2012 12:42PM Carola32 wrote:

I'm curious about that too, but I'm quite sure side effects from supplements could never be as hardcore as those on Tamoxifen. This is my personal opinion of course, but even if one doesn't suffer from Tamoxifen SE's, I would be very worried about the 'silent', unwanted effects. 

Concerning the paper I read about iodine levels & eating cruciferous vegs, I knew I read one, but can't seem to find the 'one'. Here's a link from a guide for vegans, where it is stated:

"Iodine is used by the thyroid to maintain a healthy metabolism. "Goitrogens" present in some vegetable and grains, like soy, flax seeds, and raw cruciferous vegetables (broccoli, brussels sprouts, cauliflower, and cabbage) counteract iodine and can cause an enlarged thyroid gland, called a goiter. For this reason, large amounts of soy combined with inadequate iodine intake can make iodine deficiency worse. North American vegans should take a modest iodine supplement but should be careful to not have too much."

www.veghealthguide.com/vitamin...

I was thinking; if we take supplements like I3C, there is a risk for problems stated above, but if one ups iodine ( a little bit), we should be ok. It makes sense, right? Papers arguing that too much cruciferous vegs are bad, are IMHO telling 'half-truths'.

The following link sums it up quite well concerning cruciferous vegs and studyresults (who are as of yet not 100% consistent- maybe that's why I3C etc have a hard time being taken seriously by oncs, or other people for that matter), and how 'too much' of a good thing (i.e cruciferous vegs) can actually be bad. Then again, I don't think eating vegs can hurt you (My brother-in-law has two FULL plates of steamed broccoli every evening, I'll ask him about his thyroid!). But of course you have to know what you're doing, so you don't end up with hypothyroidism: Eating large amounts of cruciferous vegs & taking supplements are great so as to hinder non desirable estrogen in your body is great, but not if you do your body harm elsewhere. It is oddly hard to achieve balance these days..

lpi.oregonstate.edu/infocenter...

About alcohol, it's a shame red wine and its grapes, which contains resveratrol, are loaded with pesticides. Even the organic choices are not 100% yukfree. My onc explained that alcohol raises levels circulating estrogen to the roof in younger women, and not only does it congest your liver, but also interferes with its metabolism. This makes sense, as drinkers tend to have 'beerbellys' (bellyfat full of harmful estrogen). I found a link to a study discussing the benefits of drinking when postmenopausal, quite interesting. It also says "Alcohol could enhance estrogenic effects by increasing the circulating levels of the hormone or by increasing the number of estrogen receptors in bone cells", which supports the sayings of my onc. 

http://pubs.niaaa.nih.gov/publications/arh25-4/276-281.htm

Another link to a surgeons blog, she is dicussing results of a study which appeared in Journal of Clinical Oncology;

breastcancerbydrruddy.com/?p=2703

Mandalala, define 'doing nothing' :-) In my mind, I guess oncs are worried that patients are not looking for ways to build better health and avoid recurrence post BC treatments, which is so important for every cancer, and also hormonedependent BC (which we are discussing here). They maybe prefer putting us on Tamoxifen, as they are not sure we will take responsibility for our own health, and of course as studies about for example cruciferous vegs are still inconclusive, rather than suggesting alternative ways, although every cancer is different. I mean that if I choose to take care of myself in a certain way, founded on what I think caused my cancer, will not be 100% applicable to my neighbor, nor physically nor mentally, as we all come from different lives and backgrounds. Maybe oncs don't have the time, energy or interest to do case by case consultations (which they should of of course). 

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Jan 19, 2012 01:02PM Heidihill wrote:

From what I've read cooked broccoli is ok. The goitrogens are mostly in raw cruciferous vegetables.

Dx 8/2007, IDC, 2cm, Stage IV, 2/19 nodes, mets, ER+/PR+, HER2-
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Jan 19, 2012 03:41PM , edited Jan 19, 2012 03:53PM by Mandalala

Carola30, thanks a lot for your detailed answer! The side effects, if any, seem to be very subtle compared to Tamoxifen ... 

Doing nothing, in my case, means skipping Tamoxifen and not substituting it with any alternative, whereas doing something would mean going to a health shop and buy a substitute or two. Or taking Tamoxifen.

I changed my diet a couple of years ago. The breast cancer must have been there already, but I didn't know. I stopped eating noodles (we had a lot of noodles) and other flour food, and mostly skipped sugar and candy. So I increased vegetables, including the cruciferous ones, fruit, fish and meat – but not so much red meat, really.

I never liked alcohol and never drink it, never have, so there is no use to cut down, and resveratrol will have to be found elsewhere.

In Sweden, salt is enriched with iodine, so the thyroid problem will be less likely, I think. 

Maybe I could cut down dairy, but I am quite moderate with dairy anyway. Shortly, I think I am taking care of myself and so, "doing nothing" would mean going on with that.

The doctors I have met haven't been into questions of diet at all. They recommend "a balanced diet", without offering any more details, other than cutting down fat. 

Dx 9/13/2011, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 1, 2012 08:04PM harley63 wrote:

FL WARRIOR
As for your insurance, I don't know, but I think that Wal-Mart will fill generic Rx for $4, without putting it thru insurance.  You might want to try that.  Tamoxifen is available as generic.

HUGS
Harley

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Apr 5, 2012 09:33PM Tesoro wrote:

Hi harley63 and FL Warrior,

 Just a quick comment that Tamoxifen is the generic name. I just started on it about two months ago. I have always tried to eat well and have used alternative treatments and home remedies for years. I don't like prescriptions but I've heard mostly good things about Tamoxifen from the people that I've spoken to first hand about it. I am also interested in alternative treatments because I try to be pro-active generally and want to have a plan down the road when I finish my Tamoxifen - even if it isn't any time soon. Wink