Long-term success of altern treatments for estro-dependant BC?

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lookingglass
lookingglass Member Posts: 12
edited June 2014 in Alternative Medicine

Hello,

I am new to these discussion boards; perhaps what I am asking about has already been covered.  I have decided against Tamoxifen and instead, I am relying on a special diet and supplements (DIM, I3C etc most of what has been covered at length here already).  I have had an estrogen metabolism test done, which showed that my Phase 2 liver detoxification is not working properly, ie not neutralizing / converting estrogen and I am re-absorbing it.  I am working with a herbalist and nutrionist.  Have fine-tuned what I am taking, and will repeat the test in July.

My questions are:

Have any of you been on alternative medicine (eg DIM, I3C) for a long-time and what has the cancer recurrence (if any) experience been? 

Have any of you measured any changes, eg via an estrogen metabolism test before and after?

I have found a lot of alternative recommendations online, but have not yet come across updates from people, when they have been on this for some time / years.   I am not sure whether repeating my 3 months later is too soon, or not.

I am still worried whether I am doing the right thing by rejecting Tamox, and getting some long-term view might help give me some reassurance.  Then again, every case is so individual.

Any feedback much appreciated.

Thanks!

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Comments

  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2013

    I am interested in the oestrogen metabolism test can you say more and if its available in europe?

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    I am interested in that test as well!

  • HLB
    HLB Member Posts: 1,760
    edited April 2013

    I refused tamofin as well. I was dx'd in 2004 with stage 2 grade 2, 2 nodes positive. Er+, pr+, her2-. I took maitake d-fraction and bio identical progesterone for awhile, 3 years maybe? They were both expensive so I quit and thought I was probably in the clear. I was dx'd with bone mets 8 years after the original dx. Its hard to know if those things had any effect. Did it come bacl because I didn't take tamoxifen? Did it stay away as long as it did because I took the D-fraction? I don't know. One reason I didn't take tamox was because the chemo instantly stopped my period permanently and the guy who prescribed the bio identicles had me do a blood test every 3 months, which always came back very low for estradiol. Lower an a menopausal woman. Do I figured that helped. I don't know if tamoxifen really prevents recurrence or if it just delays it.

  • Mini1
    Mini1 Member Posts: 1,836
    edited April 2013

    I wonder the same thing looking glass. I made the same decision (1 year ago). I don't know if it's the right decision or not, but I do know that if Tamox was a cure all the stats would be much better. People get mets and new cancers both off and on it. Who's to know if the new cancers are not caused or at least aggravated by Tamox? It is listed 3 times on the ACS's own web site. And who's to know that the srvival rate increases because the survivors also make major lifesytle changes? There is so little that is cut and dried with this stupid disease.

  • lookingglass
    lookingglass Member Posts: 12
    edited April 2013

    Dear all,

    Thanks for your replies!  HLB - I am sorry to hear about your latest diagnosis.  I am mentally preparing for it to come back - some time.  At least I am trying to have the 'in-between' on my terms.  Have not had much of that in my life.  Funny, it took cancer for me to realise that. 

    Mini1 - I agree, who knows. During my chemo, I got do many additional meds for the side effects.  Apart from a couple of paracetamol I took none, and returned a full carrier bag to my doctor, incl tramadol, which another onc lateron said I should not have been prescribed.  During that time I really lost confidence in the medical profession.

    Lily55 and Joellelee - if you google estrogen metabolism test you should find a lab in your area.  I am based in London, and the people I used are also present in the US: Genova Diagnostics.  Check their website.  They do lots of test, for lots of things.  I would not know whether they come top in all this, but I was satisfied.  The main thing is in the UK (and this probably goes for elsewhere), that you cannot just buy the test yourself.  You need a qualified professional to order the test for you (eg herbalist, nutritionist, naturpath).  They will give the results to that person and answer any questions.  They have dummy reports on their website, so you see what you get and some background info on the metabolism and the ranges that you want.  Some of my values are almost off scale!  But I am working on that.  I went for the more expensive option.  I thought I might as well do it properly and get as much info as I can.

    Hope that helps.  Off to eat another plate of raw brokkoli!

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    I am so lost as to what to do regarding Tamoxifen.  I am on the fence with it.  I am estrogen positive and pre-menopausal which makes me more agressive, I think.  I am taking DIM, among many things and plan on seeing Dr. Wong, herbalist in NYC.  He supposedly has an herbal alternative to tamoxifen called TAMWO...One lady I met online took it and had same side effects as Tamoxifen..like some weight gain and hot flashes, but he says it is safe and shouldn't cause these symptoms.  I think I may try it.

  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2013

    What is DIM please and where can we get it?

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013
  • Mini1
    Mini1 Member Posts: 1,836
    edited April 2013

    I take DIM. I get mine from Swanson.

  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2013

    I can´t work out how DIM actually works as hormone inhibitors like Letrozole etc work differently to hormone regulators which is how DIM is described?

  • Mini1
    Mini1 Member Posts: 1,836
    edited April 2013

    It is supposed act like Tamox w/o out the SE's. DIM in another form is prescribed in Europe as a cancer treatment. We have to get it in another form here thanks to the FDA. I copied some info and pasted it below. There are quite a few sites out there with info on DIM. Good luck on your research.

    Anti-Cancer Effects

    Animal and laboratory research has found that DIM kills cancer cells and stops the cells from spreading, according to the MSKCC. DIM shows effectiveness against pancreatic and colon cancer, and it enhances the effects of erlotinib, a chemotherapy drug used to treat certain forms of lung cancer. DIM also may be effective against breast and prostate cancer, as noted by the MSKCC.

    Theories/Speculation

    Research shows beneficial effects of DIM on estrogen metabolism, according to the MSKCC. This could have beneficial effects for several health conditions, such as treating endometriosis, premenstrual syndrome and chronic breast pain in women, and preventing benign prostatic hyperplasia, or an enlarged prostate, in men. Dim might also reduce side effects and risks of estrogen hormone replacement therapy.

    Usage

    DIM is available as a supplement from numerous companies, and it is a primary ingredient in a proprietary formula for immune support developed at UC Berkeley. EMedTV notes that the lack of research makes it impossible to recommend a safe and effective dosage of diindolylmethane for any purpose, and it recommends following instructions on the product labeling.

  • lookingglass
    lookingglass Member Posts: 12
    edited April 2013

    Hi,

    Thanks for the feedback.  I have come across this very interesting contribution under another topic onn the Alternative Med forum.  Let me know if the link does not work. DIM, I3C is in cruciferous veg (ie brokoli).  Eating loads of those daily is also good (juicing even better).

    http://community.breastcancer.org/topic_post?forum_id=121&id=791646&page=1

  • mormor1
    mormor1 Member Posts: 136
    edited April 2013

    Hi ladies,

    Browsing through active topics...thought I'd put in my two cents worth...I'm so pleased with what I found for nutritional approach to lowering estrogen through simple inexpensive high water soluble fiber diet (36 gm/day in six intervals).  My nutritionist (karenhurd.com) is getting her PhD...truly understands organic chemistry and has phenomenal results using nutrition for a wide variety of illnesses that traditional approaches were not able to manage.

    I too had been reabsorbing the estrogen and making more. I was 57 and still having heavy periods.  The water soluble fiber bonds with things like hormones / cholesterol /even pesticides and other ugly things and they cannot reaborb through the ileum, so are flushed out of the system.

    Had Dx 11/07 IDC Grade 1; Stage 2; 1 positive node; ER+/PR+ HER2-.  Was suggested I do chemo and Tamoxifen.  I already have quite severe vision loss...did not want to risk more as SE Tamox. My oncologist was willing to work with me in monitroing the dietary approach (did not do chemo or Tamoxifen).  Mayo clinic enhanced estradiol testing showed my levels going down dramatically and within a few months I went into menopause (no more periods; plus enhanced estradiol level confirmed it) WITHOUT ANY HOT FLASSHES or other symptoms...still haven't had any!!  Don't mind that!

    It's a very simple healthy diet (once you get over the shock that you need to give up sugar; sugar substitutes and caffeine!).  She has worked with people all over the world by phone consult...is very reasonable cost wise.

    Feel free to PM me with any questions...I might not follow this thread much...hope this is helpful though!  SO thankful to be past the 5 year mark now.  I know there aren't any guarantees, but I feel confident that I found a safe effective way to lower estrogen and I don't worry about recurrence.

    Wishing you all the best!!!

  • lookingglass
    lookingglass Member Posts: 12
    edited April 2013

    Thanks wisconsinrandi.  I have looked at Karen's website and googled 'High water soluable fibre diet'.  Do you mind telling me a bit more about it?  ie what do you put in it? I have started juicing a lot now (esp broccoli, carrots, cabbage, lemon, onion, garlic etc to help detox my liver, which is not doing well neutralising estrogen and I am reabsorbing it).  My period stopped with my chemo (last in Sept 2012, I am 47).  I have not started on Tamox, trying everything else first to get a handle on my estrogen metabolism.  I have bad hot flushes, but I do not really mind them that much.  I used to take 25 drops of sage tincture daily.  But my herbalist advised that you cannot do that for too long, so I switched to sage tea. I have started juicing fresh nettles, dandilion and cleavers - again good for kidney and liver.  You can also dry it and then make your own tincture for the winter.  I have never felt better (incl well before my diagnosis).  I agree with what Karen says on her site re stress.  I firmly believe that this was a big factor in my case, coupled with anxiety.  Being in a constant 'flight / fright' state negatively impacts the immune system and the fighter (T) cells.  Well, and I smoked and had the odd glass to self medicate regards the stress.  I knew I was playing Russian roulette with my health, but never ever believed I would get cancer.  The mind can be a powerful distractor.  So, I am trying to make it powerful the other way around, and not waste too much energy on stress and anxiety. Reading contributions on other boards, though, part of me feels I continue to play Russian roulette with my health by not taking Tamox.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    On this diet...is red meat allowed for protein?

  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2013

    What is the name of the blood test that tests for whether you re-absorb oestrogen or not?  As someone 95% ER positive on pathology report and now off hormones on my own initiative I need an alternative and to know how to monitor myself.......

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    I forget the name as well...Do you have someone monitoring your hormone levels?  I looked up some hormone approved Docs on www.breastcancerchoices.org and found one near me who is an expert in all of this...I am excited to get started.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    HLB...if your estradiol was so low, I am surprised you had recurrance!  Do some women with low estrogen still get mets?  This might go along with recent research indicating that estrogen may not be the enemy, rather the progesterone and/or the balance?

  • Mini1
    Mini1 Member Posts: 1,836
    edited April 2013

    Wheat grass is good to include in your diet. Throw it in your smoothie. You can grow it easily. You can get it in powder form, but as with most things, natural is better.

    I asked my doctor about my being 95-100% ER+ and only 10-15% and he basically told me you are what you are and you can't change that, but it seems to be that dominance by either would have to affect you. But what do I know. I'm just the patient. Frown

  • HLB
    HLB Member Posts: 1,760
    edited April 2013

    Joellee I asked my onc about that and he said there was probably a tiny bit (pinching his fingers together) that triggered it. My guess is there is never going to be zero estrogen in your body.also, the cells were abviously always there but just dormant, so who knows what triggered it. Maybe they were just programmed to wake up at a certain time. Its so confusing. Hey remember the post I made about the lady I met? Well I found about a guy that her husband helped, a relative of a friend of my dad. Dad got his phone # and I am going to call him and find out the whole scoop of what he did. All I know so far is that he had colon cancer and the guy came up with a protocol for him (like he did with his wife) and the cancer shrunk down to the point he didn't even get surgery. I know he did the essiac tea and still does it but I want to ask him what else he did and the details of the cancer.

  • madpeacock
    madpeacock Member Posts: 369
    edited April 2013

    I'm another one who turned down tamoxifen - well, correctly stated I took it for three months and then said - no more. I actually never had hot flashes on it. I think I just had too much estrogen for it to process! I take 200 mg of DIM twice a day and follow the iodine protocol from www.breastcancerchoices.org. I have Hashimoto's as well (autoimmune thyroid) and with this protocol I feel better than I think I ever have. My labs last week showed that I still crank out estrogen like a 20-yo (I'm 50, diagnosed at 48). I had the estrogen metabolism test a year or so ago and it showed that I don't process the bad estrogen well. I had a partial hysterectomy due to fibroids about eight months prior to the BC diagnosis, so periods are not a factor for me. My BC was 88% ER+ and 81% PR+, so with all of this estrogen floating around in me, am I at higher risk of recurrence/metastasis? Possibly, but who really knows. Oncotype was only 8, so no chemo for me. 

    I was seeing a hormone doctor for about two years before diagnosis. I was STRONGLY estrogen dominant and had very little progesterone, so I was on progesterone cream to try to balance the hormones. Did it contribute? Again, who knows. Obviously I stopped the cream, but actually my current supplement regimen has me feeling so much better than I did. Thyroid is under control, antibodies have dropped like a rocket, weight loss, reduced body fat, can think and complete an entire sentence without struggling, exercise regularly, and teach an aerobics class! I still see the hormone doctor, and he works closely with me on alternatives to regulate me without taking actual hormones. 

    What would I do if I had a recurrence/metastasis? Honestly, I do not know. I'm only 1-1/2 years out from diagnosis, so still a relative newbie. That said, I feel like I am doing what is right for ME and my overall health right now. 

    The other day my oncologist asked me, "I bet you feel good off tamoxifen??" Uh...yes. Just thought it was funny coming from her. She is big into alternatives and supplements (she has lupus, so we have interesting chats). She is mainstream for her patients who would not conceive of thinking outside the box, but willing to let me find my own path. She just said we have to watch me a little more closely until I get closer to menopause - which at this rate may not happen for a while!  

  • leggo
    leggo Member Posts: 3,293
    edited April 2013

    joellelee, interesting to read that you've also seen research regarding estrogen/progesterone. My doctor has brought this up in the past and I think he may have been on to something. I was never really convinced that depleting the estrogen was the answer. I've come to realize progesterone also plays a larger role. Looking forward to more research on the matter. Made me realize that breast and prostate cancer may be more closely related than I initially thought. 

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    HLB...Keep us posted about the other story!

    I am looking to try and get into this clinic outside of Philly...http://www.drmagaziner.com/about-us/dr-allan-magaziner/

    They are recommended in one of S. Somer's books for hormone therapy etc...I need someone to monitor me!

    I am still looking into seeing Dr. Wong, herbalist in NYC...

    Funny thing about estrogen...we really DON"T want to get rid of it all as it protects our bones/heart...but, gosh if a little bit can trigger mets,,...scary!  What to do?  I think it all must just be a balancing act!

    Peacock...Interesting about the progesterone cream...I thought some people had luck with using that...

    I also take DIM and am on the iodine protocol...thing with the iodine...causes me heavy bromide detox on my face...acne, yikes.  I have to start out little and work up, which I hate because with breast cancer we need a much higher dose.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    Hi Gracie!

    Yes!  I am sooo intrigued by the new estrogen studies out regarding this issue and will post things as I find them!

    Tamoxifen et all is really just a bandaid, and as soon as bandaid is taken off...many times recurrance!

    I am fearful of not taking Tamoxifen and I am fearful of taking Tamoxifen!  Such a crapshoot.

    There are many alternative Docs who feel that these hormonal blockades are not the answer...that we can truly balance things out nutritionally/metabolically. 

  • lookingglass
    lookingglass Member Posts: 12
    edited April 2013

    Hi Madpeacock,

    Have you repeated the estrogen metabolism test since you took it last year?

  • Mini1
    Mini1 Member Posts: 1,836
    edited April 2013

    I echo everything said above. I feel like I'm damned if I do and damned if I don't. I think that stress, HRT, and diet (lots of diet soda) all played a role in the cancer showing up much sooner than it would have. Now I take DIM, supplements and try to eat a good diet. I've read Suzanne Somers books and a lot of it makes sense, but I'm 90-100% estogen positive and the thought of taking another HRT scares me.

  • HLB
    HLB Member Posts: 1,760
    edited April 2013

    Well I just talked to the guy I mentioned. He got colorectal ca 6 years ago, had 23 rads and took a chemo pill, and basically did all the stuff that the lady I met does, plus enemas that her husband made up for him out of I don't know what. He gets a scope every year and every time they say its ok. I tried to get out of him if the tumor is gone or if not how big is it but he just says they tell him its ok. He was going to have surgery but it shrunk enough that he hasn't had to have surgery. He switched back and forth from the essiac to the 11 herb tea and takes it 3 times a day, plus 3 graviola pills a day and a bunch of vitamins and minerals. He uses the rife machine every other day. He kept saying "you have to stick with it though, you can't give up on it and its expensive." So there you go for what its worth! Wish I could have gotten more details about the cancer but I guess a lot of old people don't ask questions if they're told everythings ok.

  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited April 2013

    I have been reading this thread with great interest as I am in the middle of the tamoxifen debate. I took it for just over a year but could not manage my life. Just recieved the name of a naturopath and hope to see him soon. Thanks for all the good information.

  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    Peacock, interesting. I am convinced that my estrogen metabolism and production were messed up for a good part of my adult life. Now that my ovaries are gone, I feel 10X better.

  • madpeacock
    madpeacock Member Posts: 369
    edited April 2013

    Lookingglass, no, I haven't repeated the test, though I'm thinking I should sometime soon. I think I see my hormone doc in June-ish, so I may chat with him about it. 

    Momine - At first my onc was after me to get the ovaries out since I have such high estrogen levels, but she has backed off. My GYN says it is up to me, but he would not recommend it. Thinks it would just cause a new set of problems...

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