Looking for Alternative to Tamoxifen

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I had a left breast mastectomy with immediate breast reconstruction back in Nov of last year and I am doing fine. I didn't have to have radiation nor chemotherapy but the oncologist wants to start me on Tamoxifen. I'm not feeling comfortable about taking it and I'm looking for some alternative or holistic therapies that I could take instead. Aside, from me exercising, changing my eating habits and taking vitamins and herbal supplements, I would like to know what other alternative options are available. Can anyone share with me what alternative, complementary or holistic therapies you have taken or are currently taking in the place of Tamoxifen? I've read about all of the possible side effects of taking Tamoxifen and I have concerns that I may start having other serious health issues from taking this treatment. Any information about alternative, complementary or holistic treatment would be greatly appreciated. Thanks!

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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    hi bc86210,

    try to explore I3C/DIM or Myomin..  first get your self tested on

    Urinary Estrogen Metabolites-- refer here

    or the Saliva Hormone Tests

    note that I3C/DIM or Myomin works differently from Tamoxifen...

    your estrogen receptors act like a glue to which estrogen sticks to. Tamoxifen acts by binding tiself to the estrogen receptors so that the estrogen cannot stick to it.

    I3C/DIM/Myomin balances ensures that you are metabolizing estrogen towards the protective (good) estrogen metabolite..

    how specific is your ER+/PR+ diagnosis-- can you let me know the percentage??

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    A=Estrogen Receptors

    B= estrogen

    C= estrogen helpter proteins

    D= nucleus

    E= DNA (genetic material inside the nuclues)

    Tamoxifen binds to the estrogen receptors-- so that estrogen cannot stick to it.

     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    note that there are good/bad estrogen in the same way there is good/bad cholesterol or good/bad bacteria

    2OH = good estrogen metabolite

    16OH = bad estrogen metabolite (carcinogenic)

    DIM/I3C/Myomin helps by metabolizing estrogen towards 2OH (good estrogen)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    other recommendations:

    you may also want to reduce your meat/dairy intake  or choose organic meat/dairy to reduce your exposure to rBGH (hormones added to cow for it to produce more milk)-- as it stimulates estrogen production.

    reduce your use of plastics/styrofoams (xeno estrogens)

    ensure you are not inhaling dioxin-- as dioxin also mimics estrogen

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    when making a decision to forego tamoxifen please do so with the guidance of your oncologist or an integrative medicine practitioner..

    in Singapore- we have endocrinologists who orders the urinary metabolic tests-- and analyze the results for us-- then prescribe I3C/DIM or Myomin 

    a lady named Steph-- who Ive met in this board also told me that there is an ob/gynae practicing integrative medicine who also orders these tests and prescribe I3C/DIM or Myomin.

    however, both of these doctors-- would not really say you forego Tamoxifen-- as it is against their ethics to do so...(though they would say they are not a fan of Tamoxifen)

    you need to find registred practicitoners in your area who can order these tests and prescribe I3C/DIM or Myomin to you..

  • bc862010
    bc862010 Member Posts: 6
    edited April 2011

    Hi Nanay....thank you for the great information...I have heard about the Saliva Hormone testing and I'm already looking into that....as far as my diet, I eat mostly organic foods now and I've cut out the sugars and its been difficult but I'm hanging in there...I'm also seeing Dr Alan Magaziner (www.drmagaziner.com/medical-services/cancer-strategies) and he had put me on supplements back in Oct of last year and I think the supplements he put me on had actually shrunk my tumor before the surgery because when I received my pathology report back after the surgery it read that the tumors were smaller than the doctor first thought...so I'm still taking the supplements that the Dr prescribed, but I'm also looking for other alternatives as well...so I will look into this IC3/DIM or Myomin and also the Urinary Estrogen Metabolites testing as well....thank you so much! God Bless You!

  • mollyann
    mollyann Member Posts: 472
    edited April 2011

    Hi

    What supplements did Dr. Magaziner put you on?

    I've heard of him but don't know anyone who went to him.

  • SJW1
    SJW1 Member Posts: 244
    edited April 2011

    Hi bc862010,

    One thing you may want to ask your oncologist is what your odds of a recurrence are with and without tamoxifen. I had DCIS and studies on DCIS patients with negative margins after a lumpectomy, showed that taking tamoxifen only reduced recurrence odds by at best 2 percent. I decided that was not worth it to me.



    I now use diet, exercise, several supplements like iodine, fish oil, vitamin D, plus DIM/I3C and bio-identical progesterone to reduce my odds of a recurrence, all supervised by my prevent doc. Your Dr. Magziner seems to be exactly the right kind of preventative doctor to help you explore any of these that you think might work for you.



    If you want to do some reading, I would highly recommend Anti-Cancer by Dr. David Servan-Schreiber, Avoiding Breast Cancer by Dr. Joseph McWherter and What Your Doctor Might Not Tell You about Breast Cancer by Dr. John Lee.



    Please feel free to PM me if you have any questions or would like to discuss anything.



    Best,

    Sandie



  • calamtykel
    calamtykel Member Posts: 1,187
    edited April 2011

    I lasted three weeks on tamoxifen.  Week three landed me in the ER with such severe vertigo, I thought I was having one of the dreaded "strokes" from tamox due to blood clot risks.  The dizziness lasted for two weeks after I stopped the drug and was accompanied by severe SEVERE panic - all day long.  I was unable to function, eat or sleep.  I have never had such a thing happen to  me before.  I was on three different medications to try to control it  (again, 41 years old - never had such a thing before...)  I had brain fog to such a bad extent that I would forget who I was in the middle of the night...I now understand how alzheimer's patients feel.  :( 

    That being said, I did have post partum depression and pretty bad PMS every month (crying and brain fog) so I think I must be very hormone sensitive. 

    I decided to ditch the tamoxifen and my ND tweaked my supplements program (been going to him for three years, even before the BC.)  I ditched the lexapro (I know, dangerous to do cold turkey, but I was gaining weight on it and I was starving all night long and unable to sleep) and ditched the ativan an xanax.  I went only with neurotransmitter and seratonin natural support that he gave me.  Within 48 hours, literally, it turned around and I went back to normal.

    My oncologist is extremely unhappy with me. 

    I went to an osteopath and he's doing hormone testing on me as well as a thyroid panel.  Progesterone cream (natural) is very protective of breast cells, from the bad estrogen, so having your hormonest tested isn't a bad idea.  Meanwhile my nutritionist has me on several different things.  I'm on a cellular support including coQ10, spanish black radish for "drainage", lots of B vitamins, one in the form of flaxseed, a turmeric/green tea/rosemary supplement (turmeric has a lot of good research behind it for bc!), an iodine supplement (thyroid disfunction and BC are related according to some research), and a powdered sprout shake called Total Green (you can get it on line, Nutri-west makes it.)  For a while I was on ganoderma and shiitake mushrooms but I'm on a break from that for a little while.  I'm now off of the anti-anxiety supplements I was taking and I've had no withdrawl. 

    I exercise and really watch my diet (blew it this weekend.)  But I am staying away from red meat and sugar and wheat-- the later two can tax the pancreas with insulin spikes.  The pancreas has something to do with secreting enzymes that can attack cancer cells and I can't remember what it is.

    Yes, many people skip the tamox . I would be dishonest if I told you I feel confident that I am and will remain cancer free.  I get scared almost every day.  But tamoxifen is not the magic bullet they make it out to be -the side effects are not minor.  I was prepared for hot flashes; I was not prepared for a total 100 percent upheaval to my entire life.  I told my doctor I'd rather have more chemo that tamox and I was serious; the tamoxifen was worse than the chemo in my case.

    My friend helped me make the decision when she asked "What's the worst that can happen if you don't take the tamox?"  My answer was "metastic BC" (of course.)  She said "Well, what's the worst that can happen ON the drug."  I rattled off my list of symptoms, along with the risk for blood clots, liver cancer, uterine cancer, etc."  She said "AND you could still have mets....right?"  Yes.  Women on tamoxifen DO have recurrence -it DOES fail.  Otherwise it would be considered a "cure" and it's not.  You had a small tumor, stage 1 with no lymph node involvement.  If you check Lifemath's website, calculate your odds for a recurrence with or without.  I bet it's around 2-3%. 

    You have to come to peace with your own decision--for me that peace was in taking back my own health into my own hands and feeling like I'm "Doing" something -not just skipping the tamox.  I would recommend yoru reading Shane Ellison's articles on his work within the pharmaceutical company on the drug tamoxifen and why he quit his job (He was a big pharma chemist.)  Google his name and tamox and you'll pull up his story. 

    It's not an easy decision; cancer is so awful because you just never KNOW.  But you have to come to that place of peace about your own decision.  

  • Erika09
    Erika09 Member Posts: 145
    edited April 2011

    Hi, I'm new to this great thread...I appreciate if I can get some input on my situation...

    After BC in 2009, bilateral mastectomy, reconstruction, total hysterectomy, no need for AL's of any kind (And I'm so thankful to that!), my major problem now has been severe hot flashes and all the other side effects for lack of estrogen, and my onco will not put me on any, neither I want to take anything that will increase my chances of BC again.

    I've taken Black Cohosh, Dong Quai, CO2 10, Evening Prime Rose, fish oil, mutiple vitamins. None seem to work. I started on DIM-plus yesterday and I'd like to know if any of you had any luck with it for hot flashes.

    Thank you, Erika

  • calamtykel
    calamtykel Member Posts: 1,187
    edited April 2011

    Erika - have you tried natural progesterone cream?  My ND has me on Ver Vita's balancing cream.  If you read the book "What Your Doctor may Not Tell you about Breast Cancer" it goes into how natural topical progesterone is very beneficial.

    I have lots of hot flashes also --chemo put me into menopause (can't say that I'm upset - my periods were so bad!)  The progesterone cream helps.  Even if you are PR positive it is beneficial - I found some studies on it a while back - if you Google it there is lots of info.  

  • TonLee
    TonLee Member Posts: 2,626
    edited April 2011

    Erika,

    Do you know if that is common?  The no AI's or drugs for women who have total hysterectomy?

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011
    Erika - my onc recommended acupuncture for the hot flushes - it's worth trying it. I've been four times and I think there's an improvement.
  • apple
    apple Member Posts: 7,799
    edited April 2011

    hot flushes... is that a funny typo?  or what they call them in Australia, Suepen?

  • Erika09
    Erika09 Member Posts: 145
    edited April 2011

    Clamitycal - I'm looking into progesterone creams and the book you recommended. Thank you!

    TonLee - Normally, if a women went through hysterectomy doctors will immediately put them on hormones, but because of my cancer history my onco will not put me on any hormone medication. She said that hysterectomy acts like tamoxifen (lacking te body of estrogen) therefore I don't need the 5 years of either tamoxifen or arimidex which is great but all the hot flashes and side effects of surgical menopause is unbearable. Now I'm looking into every possible natural alternative.

  • TonLee
    TonLee Member Posts: 2,626
    edited April 2011

    Thanks Erika.

    When I asked about having my ovaries removed, my Onc said he still wanted me on an AI.  Is that because I am so high ER+ do you think?  Do you mind telling me what your ER% was?

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    Yes - we call them hot flushes over here :)

  • Erika09
    Erika09 Member Posts: 145
    edited April 2011

    ER/PR+ HER-! I was one of the lucky ones to have been diagnosed very early. Even though I had cancer in both breasts the tumors were less than 4mm, I opted to have bilateral mastectomy, no lymph nodes involvement, Oncotype DX result was low (12 which is very good).

    At the time my onco was definitely putting me on tamoxifen even with all the above, but I had very suspicious solid mass in both ovaries which led me to hysterectomy. Thankfully had a Benign report and my onco said that I no longer needed tamoxifen because of the premature diagnose together with removal of ovaries.

  • TonLee
    TonLee Member Posts: 2,626
    edited April 2011
  • ericavw
    ericavw Member Posts: 157
    edited April 2011

    bc862010: Wow, you're diagnosis is almost exactly the same as mine and you were diagnosed on my birthday. Crazy! My Onc suggested I go on Tamox too, of course, but being that I'm 30 and just got married... she knows I want to try for a family asap (as soon as I'm healed enough from my exchange surgery). I can't find the stinkin paperwork that shows my %'s, but I'm pretty sure it was ER+ 98%, and PR+ 95%, or somewhere very close to those #'s. As of now, I'm not going on Tamox until I have at least one child. I feel safer that way, and by then... I'm hoping there are better alternatives.

  • pinkcandy001
    pinkcandy001 Member Posts: 54
    edited April 2011

    Diagnosed 2 Breast lumps 3mm - grade 2, 4mm 10mm spread grade 1 no nodes, no family history.  56% re occurrence, havent been told by oncolog about % if not taking Tamo, but have had problems namely very dry skin, occassional flushes.  How long on Tamo before some symtoms settle down, or do they stay the whole 5 years.  No interested if my % is slight without it, and would consider comming off them, to many nasty stories about.

    Heard flaxseed oil with cottage cheese, wheatgrass, low fat diet, no sugars (or little), organic as possible, grapefruits, figs, plenty of veg.

    Vitamins C in abundance apparently

    Best to all

    Pinkie

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    hi pinky

    please go to a medical practitioner who will order a hormone profile testing for you to see if you are estrogen dominant (which most BC patients are anyway), and if you are metabolizing estrogen towards 2OH or 16OH.

    because if it is towards 2OH-- flaxseed is bad for you...

    some OB/gynae or endocrinologist - specialize in hormone testing.. try also to google Dr. Zava saliva testing..

    for your Tamo question, sorry I have no answer for that.. however other girls here might be able to offer you something else..

  • sam52
    sam52 Member Posts: 950
    edited April 2011

    Tamoxifen does NOT remove estrogen form your body; it is a selective estrogen receptor modulator..did you know that it is prescribed for some women as an infertility treatment?

    And even after removal of uterus and more specifically, ovaries, your body still makes estrogen via your adrenal glands - it is converted by an enzyme called aromatase.This is why you still need an AI  after menopause, whether surgical or natural, if your bc was ER+.

    There seems to be some misunderstanding about how these drugs work.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    hi pinky,

    I forgot to ask are you post-menopausal? if you are then you do not have to worry about your ovaries producing estrogen ..just lessen your exposure to xeno estrogens as well.

    and even if your adrenal glands are still producing hormones that will later be converted by 'aromatase' to natural estrogen-- this natural estrogen is easily metabolized by your body towards either the 2OH or 16 OH pathway..

    2OH is the protective estrogen metabolite (good)

    16OH is the carcinogenic metabolite (bad )

     yes there are good/bad estrogen metabolite in the same way there is good/bad cholesterol and good/bad bacteria..

    the idea of I3C/DIM supplementation is for you to metabolize your natural estrogen towards the helpful/protective estrogen metabolite (2OH) and for  carcinogenic (16OH to be excreted from your body by normal means.

    try to find a medical practitioner specializing on hormones so he can order the hormone tests for you and give you better advice..

    however, you will have to decide for yourself --whether or not to take Tamo or AI.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    CYP2D6 testing -- for those who wants to test how your body responds to Tamoxifen

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2011

    The CYP2D6 testing was refuted in the last, largest study that examined it.  It has never been never been fully accepted and now the oncologists who were using it are mocing away from it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    hi MOC,

    can you explain the rationale of studying CYP2D6 enzymic activitity and differentiating

    - ultra metabolizers

    - extensive metabolizers

    - intermediate metabolizers

    - slow metabolizers

    what is the premise for categorizing women amongs those 4 categories?

    and why did the group who conducted the study-- decided to pull it back =?

    jsut askin.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    no response. anyway, here are the pubweb docs that answers the 2 questions above. hope everyone can read it and form their own conclusions.

    CYP2D6 and Tamoxifen: DNA Matters in breast cancer (clear answer)

    CYP2D6 a predictive factor for Tamoxifen metabolism and respnse?? (vague answer-- read on to find out why)

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2011

    This metabolism test made a big stir a few years ago and a few oncs embraced it but most were hesitant and subsequent studies failed to support its utility.  There have been a bazillion threads about this and I really don't want to get into it because it just isn't a useful issue.  I think you should be careful about finding something on google and just throwing it out there.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    you still have not read it and made generic comments MOC. anyway, I gotta go now.

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