Facts only - Tamoxifen alternatives?

thenewme · February 2010

I've noticed several threads discussing alternatives for Tamoxifen, and I'm wondering if anyone knows where to find evidence-based facts for them? I'm triple negative, so Tamoxifen is of no use for me personally, but I know a lot of people would benefit from an effective alternative treatment with fewer side effects than Tamox.

Specifically, can anyone point me to facts showing that myomin, I3C, iodine, and/or DIM are safe and effective alternatives for Tamoxifen? Please note that I'm not "bashing" any of these or saying they are totally worthless - just asking for research that shows how they compare to Tamoxifen in terms of efficacy/safety. I've done a lot of searching, and I'm just not finding much evidence to support the theories.

Hopefully we can stick to facts here; there are other threads to discuss other things.

CrunchyPoodleMama · February 2010

I personally have found no evidence, nor do I believe (based on evidence + logic), that there is one simple, magic pill one can take to resolve estrogen dominance.

My hypothesis, which I would love to see tested in a controlled study, is that there are a certain set of factors that contribute to estrogen dominance (this part has been proven; I can dig up studies on this if you'd like), and that if those factors are systematically eliminated, then estrogen dominance will resolve and the risk of ER+ bc is minimized as much or more as with Tamoxifen (this is the part I would like to see tested).

These estrogen-dominance-causing factors include:

* eating commercial (non-organic, non-free-range) poultry and cattle and their products
* eating non-organic fruits and vegetables, which could contain high levels of pesticides
* high-stress lifestyle
* excess weight/obesity
* not sleeping consistently during night-time hours; not sleeping in complete darkness
* excessive caffeine consumption
* excessive alcohol consumption
* cumulative exposure to environmental hormone disruptors such as BPA (in all canned foods), parabens (in most cosmetics, lotions, shampoos, etc.)
* certain nutrient deficiencies that can lead to hormone imbalances (iodine, DIM and other micronutrients found in cruciferous vegetables, etc.)
* insufficient progesterone (of course, this is a chicken-or-egg dilemma but which can be corrected, at least in part, by taking natural progesterone such as in the form of progesterone cream)

I believe my own hypothesis strongly enough that I've taken steps to correct ALL of my estrogen-dominance-causing factors. I don't believe that, in my particular case or most cases, one single factor is what caused estrogen dominance and therefore can't be one "magic bullet" to remedy it. This obviously makes it a challenge to conduct a controlled study.

http://drhotzeblog.netymology.com/2006/09/20/the-link-between-breast-cancer-and-estrogen-dominance/

AnneW · February 2010

According to what I just read last night in Schreiber's book ("Anticancer"), it's the "double-blind" studies that give us the "evidence based" medicine.

That generally implies human subjects. A lot of what's going on in the way of supplement research is on mice and in the test tube. We can extrapolate from that, but it's not going to be traditional, evidence based research. That's why it can be hard to find the type of research you're looking for.

However, if you take a look at Schreiber's book, it is loaded with footnotes. There may be some papers in there that can help you find what you're looking for, as far as the I3C.

I'm really starting to think about the inflammatory process that leads to breakdowns in our body, which in turn allow cancers to latch on. Or cause heart disease. I think this will ultimately be the direction the research heads...

Anne

thenewme · February 2010

Crunchy and AnneW,

Thanks for your posts! I definitely agree that there's no magic pill.

Crunchy- it sounds like you're really taking charge of your health! You go, girl!

Anne,I actually have the AntiCancer book, and find it interesting but don't agree with everything in it. I didn't see anything about I3C - maybe there's a newer version?

I think the inflammatory process has a lot of potential too, and I know there is a lot of research looking at various aspects of it - hopefully we'll hear of some breakthroughs soon!

I'm not very knowledgeable on hormone treatments since my BC is triple negative, but just reading the blog from Dr. Hotze, it seems to me to be a non-credible resource. First, he sells hormonal products and second, he goes against the evidence-based research that I personally tend to favor. It has nothing to do with being for or against BHRT or HRT, just very pro-evidence. I agree with Anne that the studies may be hard to design, but it seems like there must be some way to test them? I read sites like the Hotze site and Suzanne Somers and some threads here, and other BHRT advocates, and it seems like a lot of their information is not fact-based. I wish they (experts from both anti- and pro-BHRT) could have a rational debate so we could all learn more about the issues.

As a counterpoint, would you consider this blog post to be a credible resource? Again, I'm not trying to be argumentative, just looking for discussion. Feel free to disagree or ignore.

http://sciencebasedpharmacy.wordpress.com/2009/03/13/bioidentical-hormone-replacement/

crazy4carrots · February 2010

thenewme -- I'm also not very knowlegeable about hormones, and I hesitate to write this, knowing that it may appear argumentative and will be shot down by some But, the docs I've spoken with, and the stuff on hormones that I've read, all tell me that testing for hormone levels is, perforce, inconclusive because hormones fluctuate, not only on a daily basis, but even by the hour. A perfect example might be the hormone insulin. If you know any Type I diabetics, you'll know that they test their insulin levels several times a day. And anyone who has experienced hot flashes will also know that their hormone levels fluctuate -- several times a day Frown . So how can one testing (or even one testing per week) exhibit anything other than a level at that particular moment?

The other thing I've read (and heard) is that the saliva test is very likely inaccurate, primarily because hormones are delivered through the blood.

As someone who is ER+, and on Femara, I have a special, personal interest in this. Thanks for posting the website; I read anything and everything on this subject, but do tend to trust those with medical degrees who have studied the endocrine, and all other, systems.

Husband11 · February 2010

Facts regarding those substances as proven alternatives are lacking. They may be, but its speculative as mentioned above, and inferred from in vitro and animal studies. I'd need good reason to substitute them for tamoxifen, and consider them more as complementary therapies (until more evidence is available).

CrunchyPoodleMama · February 2010

So how can one testing (or even one testing per week) exhibit anything other than a level at that particular moment?

Lindasa, while it's true that hormones fluctuate, different hormones cycle at different rates.

For instance, insulin fluctuates based on factors such as food intake. Cortisol fluctuates based on factors like stress levels. Melatonin fluctuates based on a daily cycle. In pre-menopausal women, estrogen and progesterone fluctuate based on a roughly 28-day cycle. This is why estrogen and progesterone must be measured on certain specific days of the cycle or its value won't tell you what you need to know. (For instance, progesterone in pre-menopausal women is generally measured 7 days past ovulation. Taking a progesterone reading on cycle day 3 would indeed be meaningless, as progesterone is always low for every woman on day 3.)

An expert in the endocrine system will know exactly when to test which hormones... it's not some random "let's test all your hormones now" regardless of what the day or time or circumstances may be.

I hope you don't feel that's shooting down your post in any way; it's just what I've learned from the multiple endocrinologists and fertility specialist MD's I've known over the years.

Is it possible the doctor who told you that was referring to a specific hormone that fluctuates so sporadically that a single measure of that hormone would indeed be meaningless? I'm not questioning the doctor who told you this but can't help but think he/she must have been referring to something very specific, not all hormones.

Fidelia · February 2010

If I understood the original post correctly - the question concerns the availability of published studies which give data about alternatives to tamox. BIG 1 98 (??) is the only trialof which I am aware which investigated tamox vs AI (specifically Arimidex and Femara). The results over 5 years initially showed some advantage for Femara and then after reanalysis showed no overall survival advantage.

The trouble with trials is that they must narrow the focus of the trial so much to attempt to isolate the right question that the trial often infers facts NOT subject to the trial. The other issue is that data is viewed 'statistically' which is almost useless when it comes to the individual. The reality for all breast cancer patients with ER+ disease is that if you respond to an hormonal medication - you have an advantage in that if you are early stage - this may be enough to mop up micro mets and prevent recurrence and if you are late stage - it may hold off more aggressive treatments for a long time....is there anything outside of SERMs AIs targeted therapy and vaccines - like supplements which have been exhaustively tested and reduced to survival stats? a few which have addressed Co enzyme Q 10, Vit D and a few other things - have they resulted in a treatment protocol likely to be offered by a medical onc - no.

Bottom line for ER+ patients who are accepting conventional care - tamox and other SERMs still have a role - particularly for premenstrual women - AIs are highly effective for postmentrual or ovarian suppressed pre menstrual and Herceptin - say no more for HER2+ - it was and remains the wonder drug for those lucky enough to respond....

Trusting people who have devoted their careers to studying this stuff - I have to agree that this is the approach I have also taken - I also swallow Vit D Co enzyme Q 10 and green Barely grass (URK) in an attempt to help my body cope with the meds AND the disease....not being a researcher - I can only say from personal experience that tamox worked for me...then quit now Femara is working and I am hoping and praying those medical geeks have something wonderful waiting for when Femara quits - as for SEs - none of them are as bad as the SEs for BC

Fidelia

crazy4carrots · February 2010

Julia -- thanks for your response. As a post-menopausal woman, my hormones cannot be tested based on a 28-day cycle. My tumour was ER+, PR-. I think that, without reliable blood tests, taken at the right time, I wouldn't chance adding progesterone cream to my pile of supplements to alleviate my (albeit fairly minor) SE's from femara. I don't know enough about the interaction of these hormones. Frankly, I don't think naturopaths do either, although I do think they have their place in the medical field. (And I'm afraid many oncs don't know enough about how these hormones actually interact either.) But that's just me -- a social progressive but a (oh, how I hate to admit it) personal conservative Kiss !

thenewme · February 2010

Hi Lindasa, everything I've read from credible sources says the same thing about the problems with testing and "balancing" of hormones. Maybe someone can point us to some research that shows otherwise. I'm premenopausal (well, actually, chemopausal...), and I surely do agree with the minute-by-minute hormonal fluctuationsl/hot flashes/etc! Ughh!

From the link I posted above, here's what the author says, which seems to agree with most experts:

**************************quote***********

What about saliva tests?

So how do you know that your BHT is giving the desired effect? Some prescribers may order saliva tests to monitor a patient's response to BHT. However, saliva tests are unreliable and considered by experts to be pseudoscience.[1] [10] [11] [12] [14] There is no persuasive scientific evidence that saliva tests are useful to monitor response to BHT or HRT. [12] The single best way to monitor hormone replacement is simply to see if menopause symptoms (e.g., hot flushes) are alleviated. [11] [14] BHT advocates argue that compounding and saliva allows patients to "balance" their hormones. But the science shows this is implausible. Estrogen and progesterone levels vary day-to-day and hour-to-hour. There are no published studies to demonstrate that single or multiple saliva tests reflect hormone need, or can be used to adjust doses accurately.

CrunchyPoodleMama · February 2010

I guess it's a whole different ballgame for post-menopausal women -- for pre-menopausal women it's so straightforward. Your doctor can tell you exactly which hormones are elevated above the reference range and by how much, which hormones are late or on time in surging, etc. It's very simple straightforward bloodwork.

I didn't realize post-menopausal women don't have this type of simple bloodwork that can be done to show whether you're estrogen-dominant and how much. That really sucks... sorry, girls! So you think that since I know with concrete hard data (from monitored cycles several years ago) what hormone-balancing techniques worked for me (btw, progesterone cream was not something I used -- I was able to resolve my estrogen dominance without using that and without using drugs), those same techniques will be meaningless once I'm post-menopausal, or simply untestable?

KorynH · February 2010

My oncologist is the head of the department at y hospital. He asked me if since chemo have I had my periods. I have not. I was not menopausal before b/c but evidently am now. He told me he didn't have any problem with me not taking Tamoxifen based on the Zebra study which has been cited to show equal reduced rates of recurrence and same survivor profiles of women who had chemo-induced ammenorhea as the women who took Tamoxifen. That was good enough for me! You can read the study here. Or just google Chemo induced ammenorhea effects on recurrence and survival of breast cancer patients.

I also started having hot flashes after chemo but began using progesterone cream and within 2 days they stopped. I haven't had any since.

Took the birth control pill for 13 years which of course since the day I was diagnosed have stopped. When asked why I needed to stop taking them the doctor told me because they (can) cause breast cancer. Opened the pill packett and sure enough it said that right in black and white. I later discovered that they are the same drug as what is in HRT.

orange1 · February 2010

Koryn - I think you linked to the wrong study. The study does not discuss tamoxifen.

Facts only - Tamoxifen alternatives?

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