Natural help instead of Tamoxifen

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AnnieBear
AnnieBear Member Posts: 96
edited June 2014 in Alternative Medicine

Tamoxifen is awful.  I've tried for three years to use it and the side-effects drive me crazy.  I have been on it faithfully for the past year and have been hot every second, sweat dripping off my body, my calf muscles cramped every day, my joints ached, my stomach and pubic area felt like I was in a grip vise.  I just went on vacation and stopped a week before and then did not use during the vacation.  I cannot tell you how wonderful I feel - I didn't realize exactly how much that crap affects me.  My question to all:  is there an alternative, natural method you can recommend that works like Tamoxifen but without all the side-effects?  Thanks.

Comments

  • chef127
    chef127 Member Posts: 891
    edited September 2013

    Hello AnnieBear,

    Sorry the tamox has been so hard. I never tried it. I was rx'd an AI but the thought of eliminating my hormones just did not sit well for me. I take 300mg of DIM a day and a hebal tea from Dr. Wong in NYC. They do not eliminate estro but balance them. I avoid meat that's treated with hormones and try to do organic when I can. There is so much artifical sources of estro in our enviorment. trying to avoid all of them is nearly impossible. Going w/o the rx'ed meds goes against the standard of care so the decision is up to you. I'm sure others will post about what works for them.

    Research in the ALT forums and you will find many who have opted out of hormonal tx.

    good Luck................Maureen

  • mormor1
    mormor1 Member Posts: 136
    edited September 2013

    I was encouraged to take Tamoxifen, but I have quite severe vision limitation (legally blind with glasses), so could not risk any possible further damage as SE.  I was so fortunate to find a nutritionist that really helped.  My oncologist was willing to work with me and my enhanced estradiol levels went down rapidly (I was 57 and still having heavy periods) and then I went into menopause (per lab and per my body) within a few months.  I actually did not ever have a hot flash or other usual symptoms!!  I was so amazed.  I would highly suggest you check out karenhurd.com and call 715-877-3510.  She does phone consults...is very thorough and reasonable with rates.

    One of the key elements of the diet is high water soluble fiber (legumes or pysllium powder)...6 servings a day.  It forms a covalent bond with the bile which the hormones are attached to and they can not longer be reabsorbed by the body, but are excreted. The water soluble fiber also takes out excess cholesterol, pesticides and other toxins.  The Mighty Bean Cleaning Machine!

    The diet isn't that hard (hardest part for most people is no sugar or sugar subs, caffeine, alcohol, perfumes)...lots of veggies and good amount of protein.  I am now six years post diagnosis and cancer free!!  YAAY!!  Feeling great!!  Still doing the diet (done to just 3 times a day of fiber...easy as pie now!).

    Hope this is helpful!!!!

  • jaine
    jaine Member Posts: 7
    edited September 2013

    I am presently taking Tamoxifen now for 2 weeks, and already the side effects I am finding are debilitating ... no sleep, night sweats, and worst of all depression where I am not normally depressed - on the contrary, I am basically a very happy person!  But this Tamoxifen I am not liking already.  

    I am LONGING to go the Holistic route instead.  Desperate.  I live on Long Island, NY .... I am truly not sure where to even begin.  Do I see a nutrionist?  Would that be the first way to go?  I know from what some of you have said and also just talking to others that DIET is a huge part of the natural way to go.  

    And Wisconsinra, a HUGE CONGRATULATIONS, a hug, and kiss to you for being 6 years cancer free!!!  Yeah!!! 

  • mormor1
    mormor1 Member Posts: 136
    edited September 2013

    Jaine,

    Sorry to hear about all the awful symptoms you're having!  I sure would encourage you to start right away and give Karen a call.  It can't hurt and I expect you will be helped in a way that is effective.

    (((HUGS))) right back at you!

    Wishing you all the best!!!

    Randi

  • jaine
    jaine Member Posts: 7
    edited September 2013

    Thank you SO much, Randi!  Actually, I talked to my surgeon yesterday out of complete desperation (I do not trust my Oncologist or most doctors to be perfectly honest as I KNOW they have a vested interest in the drugs and treatments they give you) ... but I knew that my surgeon would be perfectly honest with me.  He told me to stop taking the Tamoxifen when I told him all of my side effects (which are getting worse).  He told me that he would tell his own wife NOT to take Tamoxifen.  It is POISON.  And that many Oncologists SCARE women into taking this drug because yes - they have a vested interest in it.  They make TONS of money with each person they put on this drug.  So!  

    Because I was Stage 1A with no other treatments recommended - I was lucky ... my cancer did not spread at all into my lymph nodes or anywhere else and my onco score was low, so I didn't need chemo - he said that he would rather see my ovaries taken out and for me to see my OB/Gyn about what she thinks - the pros and cons of doing so.  He also said that I may consider not doing that either and indeed going the holistic route ... again, it is something to talk to my Ob/Gyn about (another dr. I trust implicitly).  

    But he was very adamant about Tamoxfien being absolute poison and feels strongly that it is not going to benefit me AT ALL but if anything cause me more and more havoc and a compromising lifestyle the longer I am on it.  

    Thank you so much re Karen's info!  I am definitely going to look into her calling her and finding out what she has to say as well.  I knew in my heart that I would be looking to go the holistic route.  Taking a carcinogen just makes absolutely no sense to me at all.  

    Stay well, Randi!  And so many thank you's again!!!!!   

  • mormor1
    mormor1 Member Posts: 136
    edited September 2013

    Jaine,

    Excited to hear that you received some counsel that you trust that makes your life better!!  Makes sense to me that it's crazy to suffer so much when your cancer was caught so early....Tamoxifen not essential.  Powerful statements about Tamoxifen....sobering. 

    Glad if I was helpful in some way.  For you or for others who might be interested in at least applying some of these principles...this is the basic plan:


    My nutritionist is "all or nothing" no nonsense. She knows her stuff and is inspiring which sometimes helps with compliance.  I recomment counseling with her if your situation is crucial for estrogen reduction.  She has incredible results. For me this is instead of chemo or Tamoxifen, so I take it seriously.

    I personally think it benefits everyone to increase water soluble fiber for a multitude of reasons...including reduction of estrogen. I love some garbanzo beans on a salad...and mix black beans into almost anything. I have a great Rainbow Rice and Beans recipe. To me, it seems very easy to just have beans (or Metamucil) 3 times a day...after doing 6 times a day for 5 years! Some people may need to adjust gradually...but the body does adjust...and gas really isn't the issue you might think it would be. Actually, it so cleans out the system...the odor is gone! It's when the system desperately needs cleaning out that the odor is bad. So, foul gas is a sign that more fiber is needed.
    It is important to distinguish between soluble and insoluble fiber...one (insoluble) adds bulk and moves things along faster. It's the water soluble fiber that forms a covalent bond with hormones, cholesterol, pesticides so they can't be reabsorbed into the ileum, but have to pass out into the toilet...gone for good! Both are good, but the water soluble fiber is the work horse for estrogen reduction.
    Here is the basic estrogen reduction (and immune system booster) diet plan:
    Daily Do:
    -3 palm size servings of protein (meat, fish or eggs only) (I do have eggs for B daily...make them all different kinds of ways....huevos rancheros with beans / sriracha sauce is my fav...the fiber takes away the cholesterol concern)
    -5 to 7 servings of vegetables daily
    -3 to 6 servings legumes (1/3 c beans or 6 Gm plain Metamucil in water)
    -8 cups water (I like at least some of it to be the H2Oh type for the cold fizz pleasure)
    I can have carbs, but if weight loss is desired...no carbs
    8 to 9 hours sleep per day
    NO list: (this is what turns away all but the most determined)
    sugar or sugar substitutes (not even Stevia)
    caffeine
    alcohol
    fruit (at least in the beginning stage...as I said, I can have 1 serving a day now)
    milk (almond / rice milk are fine); cheese is ok (YAY!!), plain yogurt, cottage cheese, cream cheese all ok.
    no skipping meals

    I hope this might be helpful for many.  There are well known biochemical principles that back it up, not just "feel good" approaches.

    Happy ((HUGS)) to you, Jaine!!  Life is good again!

  • jojo68
    jojo68 Member Posts: 881
    edited October 2013

    I am on Dr. George Wong's herbal Tamoxifen and feel great!

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

    Jaine, how do the oncs make money fromputting you on tamox? I am thinking it must be a different system than where I am.

  • Hopefuleigh
    Hopefuleigh Member Posts: 2
    edited October 2013

    Greetings, Wisconsin Randi!  I was so interested in your post.  I've been recently diagnosed with mixed ductile/lobular BC (1cm, ER/PR+/her2-, 4% prolif.rate, 1 positive node/19 others negative, lumpectomy with, unfortunately axillary dissection) and have been frustrated by what seems to be a 'one size fits all' thought process from my MO and RO.  Even though this was caught very early, the MO immediately suggested chemo because of the one positive node, even though it was only mildly positive and the other 19 were negative.  She said I would be going 'off protocol' if I skipped the chemo.  The RO is pushing for whole breast radiation and has thrown out some scary statistics.  I've been a natural gal for about 13 years, eat organic where possible, exercise and generally take good care of myself (never smoked, only occasional alcohol) and have taken a minimalist approach when it comes to medicine (less is more in my opinion, most of the time).  I am really having a hard time moving forward with all this treatment and have already decided against the chemo.  I don't believe the single-digit benefit (about 2%) outweigh the costs.  I'm struggling with trying to decide if I have the chutzpah to say no to the rads and Tamoxifen (like my gut is telling me) and really push the nutrition.  I believe so strongly in the power of nutrition and am leery of the lifelong damage and/or side effects from the radiation and oral meds.  I feel a little let down that I got the dx in the first place, but have some other environmental exposures that I think were overwhelming...maybe my healthy lifestyle kept it from being bigger and badder...?  Any support and/or information out there to help me move forward with the natural path?  I want so much to stay and take care of my family for as long as possible, but am trying so hard to find a way that makes sense for me.  Any advice or words of wisdom would be so VERY MUCH appreciated.  Blessings...

  • abigail48
    abigail48 Member Posts: 1,699
    edited October 2013

    I'll be sending you good thoughts.  my situation is some different as I'm 76, will be 77 the end of may, & I have pretty much no family.  so no telling what I would choose if I were younger or more connected.  gary null does say don't have nodes excizedd, & today says dcis & lcis have been recatigorized as not cancer.

  • itsjustme10
    itsjustme10 Member Posts: 796
    edited October 2013

    jaine...I did the same thing - actually I asked both my breast surgeon and radiation oncologist what they thought off the record about tamoxifen, and both said not to take it.  The RO was a little harder to pin down, first thing he asked what the MO said, and when I told him I just wanted his opinion, that I understood she had a vested interest in me taking it, but I really wanted to know what he thought, he said that as long as it is off the record, I've done so much, and the risk wasn't worth the reward.  The breast surgeon said something similar, so I'm comfortable with it.

     I go to the gym 5 or 6 days/week - and even my MO said that was the best preventive thing I could do.  Whether you need to lose weight or not, just working out lowers your risk of recurrance greatly. 

  • lifelover
    lifelover Member Posts: 553
    edited October 2013

    I stopped my tamoxifen about a week ago just to see if I would feel better without it.  I'm not sure . . . I have less hot flushes but because of neuropathy from surgery and chemo I can't tell whether I have aches and pains because of that or the tamoxifen.

    Anyway, I plan on at least taking a vacation from it.

    I've been reading up on natural foods that will help block estrogen in the cells and really appreciate this thread for the information you gals/guys? have provided.

    Exercises is so difficult but I am trying with pilates and walking - I agree this is very important for us :)

  • Carrie61
    Carrie61 Member Posts: 56
    edited October 2013

    Hopeful, check out this blog, I am also considering saying no to chemo and trying this approach. Www.chrisbeatcancer.com.

    Carrie

  • Marytg
    Marytg Member Posts: 4
    edited October 2013


    Hopefuleigh, I was diagnosed with Ductal In Situ, stage 1, with no nodes affected - left side only. I opted to have both breasts removed since there is strong history of breast cancer in my family. Then I made huge changes to my diet; vegetable based and very little sugar. I also drink a green juice daily and carrot at least 3x a week. I was a huge sugar junkie and ate lots of animal source products. I made these changes after a good friend was diagnosed with ovarian cancer. She had a full hysterectomy and oophorectomy and was told she needed chemo or the cancer would return. She opted for the Gerson Diet instead of chemo after seeing "Fat, Sick and Nearly Dead", "The Beautiful Truth" and other such info-videos. Immediately after surgery her cancer blood markers were in the high 1000s. Within 3 months of being on the Gerson diet they dropped to 10! After her success I became convinced, so did her very skeptical oncologist.


    Her success also convinced me to stop Tamoxifen. I'd been on it for over one year and although the side effects weren't too bad (the poor sleep was the most annoying) I was very concerned about a possible blood clot and the effect on my liver. The 2-4% chance of recurrence just wasn't worth the damage it might do to my body. I am going to step up my diet changes and add the coffee enemas that Gerson people swear by just to be more proactive. I am also demanding that my doctor order the blood cancer marker tests every 6 months so I can monitor my success.


    Another change I am making is adding a Reverse Osmosis filter system to my drinking water. My water isn't Fluoridated but they put lots of Chlorine in it.


    I just want to support you. I pray you have perfect health.

  • lifelover
    lifelover Member Posts: 553
    edited October 2013


    Just got my first box of organic vegetables which I'm having delivered weekly. I'm trying to eat lots of raw vegetables and less red meat (basically none). I enjoy cooking so I'm experimenting. Today I'm making a potato, carrot, and cabbage soup.


    I still haven't resumed tamoxifen.


    Looked at Gerson diet - some terrific ideas there!


    Giving up sweets will be the hardest but I'm on the journey.

  • Marytg
    Marytg Member Posts: 4
    edited October 2013


    Giving up sweets was so hard for me. After reading Crazy, Sexy Cancer by Kris Carr and about her insights into sugar and addiction to it, I did my own research. Turns out sugar feeds cancer. I asked my oncologist about this and she confirmed that when they lab test cancer cells for aggressiveness they add sugar. I ate sugar every day without fail and if it wasn't in the house I would go to the store. It took two weeks for me to kill the craving. Now, if I take a bite of something really sweet it tastes like I'm eating concentrated sugar.


    The other food I'm told to give up is white flour. I'm still learning about that one. Haven't found definitive evidence yet that it 'ferments' in your gut but I've switched to whole wheat just to be careful; anyway, it's healthier.


    This is Kris Carr's website: http://kriscarr.com/blog/love-list-15-crazy-sexy-diet-tips/

  • Shira
    Shira Member Posts: 64
    edited October 2013


    Hi Hopefuleigh,


    I am at the same decision point as you. Haven't been that healthy in the past couple of years though, but my family and I tend to go the natural routes and mostly eat organic (but unfortunately for me organic ice-cream tastes very good!).


    In any case, had two surgeries, the second to get clear margins and to take more nodes since they didn't find the sentinel nodes the first time, and next week I'll meet with the Onc and Surgeon who will try to put me on Tamoxifin and schedule radiation, which I keep saying I'll do but I have a feeling I won't, maybe especially the Tamoxifin. So if you don't mind keeping us posted that would be helpful. I might do part of the Budwig and see if I can get help with the natural Tamox piece, but I have been going back and forth with all of it.


    Also, it's interesting that a few of you have gotten surgeons and radiation docs to say Tamox. isn't good!

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


    Marytg, when you eat food, it goes into the stomach, where your digestive system converts the carbohydrates into glucose. The glucose goes into you bloodstream and feeds your cells.


    It is not as simple as "cancer lives on sugar." First of all, ALL cells "live on sugar," but also they live on blood glucose, not table sugar.


    So, it is thought that it may be beneficial to keep your blood sugar steady and within the normal range. It is good not to eat sweets, but you also want to avoid white carbs and lots and lots of carbs in one meal, for example. A big plate of spaghetti with a side of garlic bread is not a good meal if you want to avoid a blood sugar spike. Further, it is important to get some exercise. Even a 15-minute walk after a meal will help control blood sugar.

  • lifelover
    lifelover Member Posts: 553
    edited October 2013


    Thanks for that Marytg, I will read all I can get my hands on to stop me eating sugar.


    Momine, I agree with you. I eat a balanced diet (when not gorging on sugar). Breakfast is oatmeal with an apple, cinnamon and flaxseeds. Lunch or dinner is a huge green salad with lots of raw veg and chicken or ham added. Dinner is usually a small portion of meat or eggs with lots of veg (no butter or salt on the veg).


    I feel that I'm on my way to a better diet and I really appreciate all the advice that's posted here. Good or bad, negative or positive - it all helps to get the brain "in gear".

  • justfarmthroughit
    justfarmthroughit Member Posts: 5
    edited October 2013


    Lifelover I am a recovering sugar addict too, when I'm feeling really desperate for a sugar hit I defrost some frozen blue berries and raspberries plonk some organic acidophilus yoghurt on top with a couple of drops of stevia. I do this at least once a day and if I'm feeling really hard done by I'll have it twice. It helps to keep me sane. Probably not ideal but for me I think its better than scoffing the cookies I make for the kids lunches.

  • lifelover
    lifelover Member Posts: 553
    edited October 2013


    Thanks justfarmthroughit,


    I will give that try. I love blueberries especially :)

  • budrfligal13
    budrfligal13 Member Posts: 110
    edited December 2013
    Hi ladies. I'm so happy to be reading all of your posts. I have my F/U post bilateral mastectomy appointment with my oncologist to go over the final pathology. Also, she will be trying to convince me to take tamoxifen, which I do not want to do. First, I'm waiting for my first period to return, then I am freezing my eggs. (I'm 38, no children). I just don't want to hear her say, "You can't wait to get your period....it's too risky!"
    Two nodes, both negative, were removed from the right side, with clear margins. The left was done as a prophylactic measure. There is no evidence of cancer anywhere else in my body. (ER+/PR+, HER-)
    I've already done the research on the Gerson Therapy. I done some coffee enemies at a safe time distance after I was finished with chemo to start the detox process. I eat and juice organic foods, eliminated the bad "whites" and processed foods, installed filters on shower and faucet, and take Gerson supplements. I cannot start working out yet though because I am new with the expanders and they are too uncomfortable.
    Anyway, I am seeking a holistic physician in NJ. I doubt my insurance will cover it, because it is Medicaid. I've heard of Dr. Wong through the internet. Does anyone know a physician with reasonable rates in my area? I plan on getting a second opinion from a different oncologist, but he/she will be "conventional" as well, because I know that insurance will pay for it. I'm hoping that I'll get a different suggestion. My gut is telling me not to go on this drug. I really need an affordable holistic practitioner. Any information, advice, suggestions, are appreciated. PM me if you want. Thanks,
    Laura
  • Dita100
    Dita100 Member Posts: 1
    edited December 2013

    Tamoxifen is a generic drug -- and similarly to any generic drug it can introduce legally a margin of 15-20% deviation from the original drug. The result is that the each generic company might have different components and dosages within the 15-20% margin. Moreover, one rarely knows where the generic drug was actually produced (they are mostly outsourced...) or whether its production was properly supervised.  I have already replaced two generic Tamoxifen after the companies apparently changed the dosages.  Luckily, my pharmacist has been willing to do it for me when she realized my sudden adverse reactions to the drug, but generally pharmacists rarely talk publicly about it and the oncologists simply ignore it.

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