CALLING ALL SURVIVORS .... AND THAT MEANS ALL OF US

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    marejo,

    Don't you love the new "fructose" commercials?  What they don't say is they can put both in fructose and regular sugar.  Reading labels suck doesn't very sad what we eat.  I've learn anything in a box is pretty much off limit. I try to use this only if I'm not feeling great because of chemo. They are the quick meals we have learn to eat...yucky but quick!

    Flalady

  • Liz08
    Liz08 Member Posts: 470
    edited February 2009

    Mary Jo, this is a great idea.

    I am a 1 year survivor and changed/added a few things to my diet, lifestyle and now make a conscious effort to cut out or to limit chemicals in my environment.  Now I use only natural shampoos, conditioners, soaps, creams, lip balms, deodorants, hair sprays, detergents, cleaners, etc.  I also try to buy as much "organic" as I can without breaking the bank and also in the summer, grow more of my own.  In addition, now I spray down my produce with a vinegar and water mix and let sit to break down the pesticides somewhat (this was advised by my naturalpath).  I have always exercised and continue to do so.  I do try to find time once in a while(a couple times a week) to just close my eyes in complete silence for about 5 minutes (medidate) to destress.  This is something that I find very difficult having 3 young children and a loud household. I also pray alot more while in complete silence, this has helped me a great deal spiritually.

    After I finished radiation, I decided to see a naturalpath that my surgeon recommended, who specializes in women's health and my surgeon has been sending her bc patients to for over 20 years.  I have family member who are also naturalpathic physicins but they don't specialize in women's heath like the recommended naturalpath.

    Under the advice of my naturalpath, I take a multi-vitamin that contains no copper, iron, or boran and is formulated at the multi vitamin from the Cancer Centers of America. I  take CoQ10, Indole 3, green tea extract, grape seed extract, curcumin, vit. E, Idomere(Iodone), Calcium/Magnisium, vit D3, and melatonin b/4 bed. In addition, I do try to drink green tea regularly, along with 4 oz pomegranate juice, and 4 oz acai berry with blueberries.  My fruit of choice to eat is and always has been strawberris. Lastly,I TRY to eat brocco sprouts (a healthy pinch) but am not too good about this part, mainly because I have to make a special trip out of my way to buy them so I try to stock of for out 2-3 weeks. 

    Lifestyle changes that I need to work at is to get more sleep and to destress.  

    Liz

  • MBoss
    MBoss Member Posts: 38
    edited February 2009

    I though I was doing everything right. Well, I am going to keep on trying-I eat healthy, more fruits and veg. Try to walk 2miles in 30min 3-4 times/wk. Cut down on sweats, though i don't know if it makes any difference(i just love sweats). Eat chinese once every three months or so (because it has soy and love chinese food). Get some direct sunlight when there is sun, i live in michigan. Stopped stressing on little things, nevermind if my house gets a little dirty. Hired cleaning lady. Finally be nice to others.

  • Lucy47
    Lucy47 Member Posts: 183
    edited February 2009

    Karen ...your naturopath told you to eat pomegranates???? I was at the Tamoxifen site and there they said that people who are taking Tamoxifen should avoid pomegranates... (which I love). Could you tell me more about this?????

    Thanks,

    Lucy

  • althea
    althea Member Posts: 1,595
    edited February 2009

    Mary Jo, I too began to realize the prevalence of corn syrup as I was finishing rads.  Starting with chemo, I was thirsty ALL the time.  I never went anywhere without an arizona tea in my hand.  When I was going through rads, it was crangrape juice.  I never used to be a calorie counter, but when I was gaining weight in rads for no apparent reason, I came to realize I was consuming 1000 calories a day just from my beverages. 

    Then I realized that the container is NOT a serving size, but a measly 8 ounces, and every single one of my favorite drinks was sweetened with corn syrup.  And you know what else, I had one of these sugary drinks at chemo treatments and at the appointments with the oncologist.  I never had anyone caution me against my intake of corn syrup, or anything else for that matter.

    My sweet tooth has diminished dramatically since I ousted beverages with corn syrup.  This year I'm learning to make my own salad dressings.  You'll find corn syrup in most of them too.  

    I still get confused about sugar.  It's an oversimplified statement when you hear 'sugar feeds cancer.'  No matter what we eat, it breaks down to glucose, which is sugar, so to me, what does it matter.  What I've learned that truly makes sense is what's called the 'insulin response.'  The highly refined sugar hits our system very quickly, whereas less refined products assimilate more slowly.  It's not so much the sugar, but the production of insulin in response to sugar overload that we want to avoid.  Insulin responds to sugar overload and eventually exhausts the pancreas.  Taking in low quantities of sugar that assimilate slowly avoids the insulin response.  This is why diabetics can have  some sugar but not too much.  This is wisdom that can benefit all of us, methinks.  

  • marejo
    marejo Member Posts: 1,356
    edited February 2009

    I hear ya, althea and think the best is low grams of sugar, veggies, grains and fruits and lots exericise. 

    That's just best for overall good health - cancer aside.  It's good for us all for many reasons. 

    Thanks for contributing.

    Mary Jo

  • pdlc436
    pdlc436 Member Posts: 60
    edited February 2009
    I exercise more.  I say yes...metaphorically and literally.  I am following a macrobiotic diet (or as close to that as possible.)  I meditate using yoga nidra CDs.  I drink no more that 1 glass of wine a week.  I am more focused on not missing out on things.  I have read every book about BC available on Amazon! Tongue out I take Spirulina, I3C and CoQ10 religiously. But mostly I like being surrounded by women like you, who have been through this and make the journey less frightening...PdlC
  • artsee
    artsee Member Posts: 1,576
    edited February 2009

    Can someone please tell me about I3C....I noticed quite a few of the woman here are taking it.

  • everyminute
    everyminute Member Posts: 1,805
    edited February 2009

    I just got this from our local Breast Cancer Options this weekend...

    Iodine Deficiency- An Old Epidemic is Back

    http://rs6.net/tn.jsp?et=1102448951259&e=001o-j2MjlDoMiONmiCHTa7q4yYhF3uIw182gi8TBMVNVyRS0psNQ9PNAJ_NeCwGfgVtbm6g373Ir4oLOwDXB_Z8029aq2wc7hgSumaOHm1pEdCz-WGXot1Qf_4I40v8NhjEJDncK5Rj7NT8nDs6IxTW5H3SBSLi7KfFwLwYRuBbEnHsnw8lhxEzLs5dPrumGV3hZ-10TTUt45oPR0nS8QlM2HPDzMXsJ1SdcazE3d0OUrTlBAVYc21nA==

    by Jacob Teitelbaum MD

    Iodine deficiency used to be an epidemic in the U.S. (until salt was added to iodine and wheat). It is now coming back big time! Fortunately, it is an easy to prevent problem, and addressing it can help you feel much better.

     Unfortunately, the issue of iodine deficiency will be growing in importance over the coming decade. This is occurring for a number of reasons. In fact, iodine intake has dropped by 50% from 1971 to 2001 and continues to drop. This causes not only an underactive thyroid, but likely increases the risk of breast cysts and cancer dramatically (the U.S. has 3 times the incidence of breast cancer as Japan, where iodine consumption is higher).

    Iodine deficiency may also contribute to fatigue and CFS, and simply supplementing for 90 days with 1 bottle of iodine (called Iodoral 1 a day) can tell you if you need it and may help a lot!

    Bottom Line? For those with CFS & FMS, unexplained fatigue, or breast symptoms or cancer,  it is reasonable to take a high dose iodine supplement (Iodoral) 1 a day for 1 bottle (90 days). After this, if you feel much better you can stay on it or stop it and see if you still need it. You may find that one bottle is enough to "fill your tank" and correct any deficiencies, as the Energy Revitalization System vitamin powder supplies 150 mcg a day (the full RDA) for maintenance. For those with breast cancer, I would add the one Iodoral a day long term and consider working with a holistic practitioner to take 5 a day while waiting for the research to be done. For breast cancer I would also add vitamin D 4,000 units a day, Coenzyme Q10 at 200-400 mg a day, and the vitamin powder.

    The issue of recurring iodine deficiency is fascinating, with major health implications. Fortunately, it is easy to both treat and prevent.

    The issue of iodine deficiency will be growing in importance over the coming decade.  This is occurring for a number of reasons:

    1. Iodine deficiency with goiter has historically been widespread in the U.S. (especially in the Great Lakes region). This is why iodine was added to salt.

    2. Until recently, a lot of our iodine intake was from wheat (~ 25%).

    3. Unfortunately, flour mills have switched from adding iodine to using bromides instead. Bromides in flour was banned in the U.K. in 1990, and in Canada in 1994, as being toxic, but the FDA still allows its use in the U.S.

    4. As iodine and bromine (and fluorides) are all related chemically (called halides), they can act as competitive inhibitors to each other.

    5. Because of this, we are seeing iodine deficiencies from both decreased intake, and from bromine and fluorine making the iodine you do have less effective.

    6. Iodine intakes (estimated by urine output) dropped by ~ 50% from 1971 to 2001 (see article in Salt Institute).

    7. The current RDA for iodine is ~ 150 mcg/day. Much of this comes from iodine added to salt. Unfortunately, most of the salt used in food processing does not have iodine, and people are using less salt at home (the stuff that is iodized) because of the misguided medical advice (except in those with heart failure) to avoid salt. People who eat more salt live longer.

    8. An additional problem is that the addition of large amounts of unfermented soy (e.g., soy milk, soy cheese, soy protein added to food) inactivates an enzyme called "thyroid peroxidase" and can cause "hypothyroidism." This is less of a problem with fermented soy products like tempeh and tofu.

      

    What are the implications of iodine deficiency coming back?

    1. An epidemic of thyroid problems. Bromides which may block iodine function are implicated in many thyroid disorders (bromides are reported to be 50x higher in thyroid tissue of thyroid cancer patients). Low iodine can contribute to an increased risk of both an under or over active thyroid.

    2. A key role that iodine plays is in breast tissue, and breast tissue from women with breast cancer have lower iodine levels than healthy controls. This effect is so marked, that hypothyroid women (who free up more iodine for breast tissue use) actually have lower levels of breast cancer. Women in Japan (who get much more iodine in their diet) have a 2/3 lower risk of breast cancer than women in the U.S.

    It is probable that low iodine is a significant risk factor for breast cancer. One of the upcoming studies that our foundation is planning after we finish the Natural Treatment for Infertility Study is to add high dose iodine (4-5 Iodoral tablets a day) to the treatment protocol of women with breast cancer.

    3. Low iodine may increase the risk of heart disease. For a review of this issue, see Hypothesis: Dietary Iodine Intake in the Etiology of Cardiovascular Disease in the Journal of the American College of Nutrition.

    4. Low iodine may also contribute to fatigue and CFS. A study showed that those with low body temperature and fatigue felt better on Iodine 1,500 mcg a day even though their temperature did not rise with treatment. It is reasonable for those with chronic fatigue, CFS and fibromyalgia to try added iodine (Iodoral) for 3 months to see if it helps.

      

    Testing: The accuracy of iodine testing has not been confirmed to my satisfaction, and I find that it often works best to treat clinically based on your symptoms and then see if it helps. Much as we like to have a piece of paper that gives definitive results (lab and x-ray results), sadly these results are often not reliable (see Lab Testing is NOT Reliable!). I would simply treat without doing testing in those who have:

    1. Breast cysts, tenderness, or cancer. I consider these markers for iodine deficiency.

    2. CFS or fibromyalgia.

    3. Thyroid disease or thyroid cancer.

    4. Low body temps (under 98.0 Fahrenheit). In one study using 1,500 mcg/day of iodine in those with fatigue and low temperature, the temperature did not come up, but the patients felt much better on it and had improved energy.

     If you prefer to have lab confirmation, Dr. Kent Holtorf is using the urine iodine testing from Nitek and subsequent treatment with iodine when low. He estimates about 50-60% are low and about 20-30% very low. Dr. David Brownstein, a wonderful physician who wrote the book Iodine (available at Dr. David Brownstein's website) does an iodine loading test discussed in his book, which also shows ~ 95% of folks he tests to be low. The question with iodine testing is how one defines "low," and I personally am not anxious to do a test that does not affect how I treat.

    Both simply treating without testing or doing lab testing are reasonable options, and a good case could be made for treating everyone who has fibromyalgia or CFS, unexplained fatigue, or breast disease (cysts, cancer, or tenderness) with iodine for 3 months to see if they improve without any testing.

      

    Treatment

    Iodine Supplementation: We used to use Lugol's solution (a mix of iodine and iodide), but this is messy, irritating to the stomach, and can mildly stain teeth. A much preferred option is to use Iodoral 1 tab a day (12,500 mcg iodine per tablet a high dose made by the Optimox Company), which is available on line and at many holistic practitioner's offices. Some doctors are using 2-4 tabs a day, but these higher doses are best done under a holistic practitioner's supervision as very high doses of iodine may suppress thyroid function. Though there is a concern about thyroid suppression from high iodine, this is generally not seen at a dose of 1 Iodoral a day (if you look at the actual studies as opposed to people simply speaking from no data). An additional benefit is that high dose Iodine may flush bromides out of the body over time, resulting in your being healthier and needing less Iodine over time.

      

    Two cautions:

    1. A small percent of those with Hashimoto's Thyroiditis will occasionally flare when taking iodine supplements (even in multivitamins). This usually goes away over time and the iodine is actually very helpful. Many who use high dose iodine, such as Iodoral, report that they see less sensitivity in these folks starting with a high dose of iodine instead of a low dose.

    2. In those with iodine allergies, I would not take the iodine supplement. Having said this,      I have never seen anyone who had an allergic reaction to x-ray dyes also react to iodine supplements but better safe than sorry.

      

     Diet and Lifestyle

    1. Seafood tends to be higher in iodine. An especially rich iodine source is seaweed, such as kelp. This is why the average Japanese woman who eats a lot of seaweed gets 12,500 mcg of iodine in their daily diet, while in the U.S. most are lucky to barely get their 150 mcg a day. This may be why breast cancer and breast cysts are much less common in Japan than in the U.S. and England (the incidence of breast cancer is over 300% more common in

    the US than Japan).

    2. Cut back on soy products if you eat a lot of them especially unfermented soy.

    3. Consider using less fluoride (I prefer it be in toothpaste instead of drinking water) and Bromide (often found in hot tubs to keep down bacteria other options are available).

      

    Summary: Bottom Line? For those with CFS/FMS, unexplained fatigue, or breast symptoms, it is reasonable to take an iodine supplement (Iodoral) 1 a day for 1 bottle (90 days). After this, if you feel much better on it you can stay on it or stop to see if you still need it. You may find the one bottle is enough to "fill your tank" and correct any deficiencies, as the Energy Revitalization System vitamin powder supplies 150 mcg a day (the full RDA) for maintenance. For those with breast cancer, I would add the one Iodoral a day long term, and consider working with a holistic practitioner to take 5 a day while waiting for the research to be done.

    +++++++++++++++++++++++++                                                                                                

  • Liz08
    Liz08 Member Posts: 470
    edited February 2009

    Mary Jo-

    where do you get the Brassica tea?  I've been meaning to buy some to have as a back up on days I don't get the brocco sprouts in.  How does the tea taste?  I love most teas but am a little nervous about this one.  

    Thanks,

    Liz

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    Liz,

    Have you seen the site breastcancerchoices.org.  This has a lot on Iodine. A lot of ladies in this area do take Iodine supplement.  I have been for two years now. Search thyroid cancer and breast cancer. There is also a connection there that is a little scary.

    Flalady

  • marejo
    marejo Member Posts: 1,356
    edited February 2009

    Hi Liz....go to brassicatea.com and you can read all about the brassica tea with SGS and then click on a link to "buy tea."  I have been purchasing it a little over a year now and it comes pretty quickly after placing your order. 

    The tea tastes fine.  Not as flavorful as some regular teas (one of my favorites ... Bigelow Peach) but it's fine.  I think of its benefits as I drink it and that makes it taste even better.

    Artsee....as for the 13C........I'm waiting for an answer to your question also.  We'll see what that one is for.........hoping I don't feel the need to add another supplement to my arsenal.  Mark says pretty soon I won't have to eat - I'll be full from all the supplements.  Smile

    Hugs....

    Mary Jo

  • Liz08
    Liz08 Member Posts: 470
    edited February 2009

    Flalady-

    thanks for the info. My naturalpath recommended the iodine and lately there's quite a bit of research iodine as you just pointed out.  I try not to think of all the connections to breast cancer. I just got diagnosed with a 2nd basal cell carcinoma on my scalp(which has been burned numerous times where I part my hair) in less than a year, now I'm wondering if there's a connection with bc....I am a former sun worshiper but 2 basal cell carcinomas in less than a year makes me really worried.

    Mary Jo-

    thanks for the tea info.  After reading your info, I remember some of this info from the Hopkins site which I haven't visited in a while. Do you visit that site at all too?

    As for the indole 3 carbinol, it's a supplement that is supposed to give the same benefits as the corneferus vegetables.  Kind of like the "brocco sprouts" broccoli, cabbage, cauliflower  do, etc. My naturalpath strongly recommended this supplement during the 1st visit.  Hope that helped with the question???  

    Liz

  • marejo
    marejo Member Posts: 1,356
    edited February 2009

    Yes Liz, I do visit the Johns Hopkins "ask the expert" periodically.

    Thanks for th info. on the indole 3 carbinol.  Thankfully I won't have to add another supplement....I eat plenty of broccoli.....brocco sprouts......tea with SGS and caulifower...Smile

  • Liz08
    Liz08 Member Posts: 470
    edited February 2009

    For those who are interested...here's some info on Indole 3 Carbinol.

    http://www.phytochemicals.info/phytochemicals/indole-3-carbinol.php

    This is the ID3 that was recommended to me and this is the site I buy it from since it's alot cheaper then buying it at my doctor's office.

    http://www.bayho.com/p/827018.html

    I hope the above links, if you then it has to be copied and pasted into your browser to view.

    Liz

  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009

    Marejo.. Again.. Thank you for starting this thread.. I cannot wait to go back over it all after I get off rads... ..

    Laura

  • marejo
    marejo Member Posts: 1,356
    edited February 2009

    You're welcome Laura.  I love it too.  Since a breast cancer diagnosis I LOVE learning about good health/nutrition etc.  I love reading about all the things each of us does and doesn't do. 

    Sending love and peace to you Laura.  Hey, Laura, I noticed we both were stage IIb - we're both her2 positive and both had 1 node positive.  Funny thing also.....I was dx June 24, 2005.  Wow..........Look at me......I am 3 years 7 months out AND you sweet sister........you're time is coming!!!  Hugs to you.

  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009

    Thank you so much for that Marejo!.. You know where I am right now... 05! I am so happy for you.. you are my light at the end of the tunnel... I love your smile and your light!

    Did you do rads... I was told I did not need them after mast.. but.. now.. after 4 more  opinions.. I am doing them...

    Thank you.. ((((((((((((((( hugs right back!!!))))))))))))))))))) Thank you for sicking around here for 3 yrs and 7 months for us Her 2+ gals and everyone for that matter!

    Ta Ta Sisterhood!

    Love and Blessings !!!!

    Laura

  • marejo
    marejo Member Posts: 1,356
    edited February 2009

    Laura...I sent you a private message.  I did do rads, yes.  28 of them.  I, too, had a mastectomy and 2 sentinel nodes removed.  At surgery they said both nodes were negative but when the final pathology came back the 1st node had 1 micromet measuring .085 cm.  I did not let them go in and remove more nodes as I truly felt confident that no more positive nodes would be found.  My surgeon and my onc. agreed with my decision but after meeting with a radiation oncologist she felt that although the odds of more positive nodes being found wouldn't be likely....there was no guarantee that there couldn't be either...hence the recommendation for radiation following chemo.  Looking back...I'm so glad I did it.  Just one more assurance that I did all I could do.

    So far so good.........

    Love & Peace...

    Mary Jo

  • marejo
    marejo Member Posts: 1,356
    edited February 2009

    Laura....sending you a HUGE happy birthday wish for yesterday.  I hope your day was super special.

    May God's Peace surround you...........

    Mary Jo

  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009

    TY Mary Jo.... !!! If it had not been for a "fill" from H#@L... the day would have been perfect!!! hehe..

    Laura

  • artsee
    artsee Member Posts: 1,576
    edited February 2009

    MaryJo...maybe we should try the L3C. I eat the broccoli, cauliflower and cabbage all the time but maybe we have to eat 10 of each compared to 1 or 2 capsules. Anyone know the comparison to fresh veggies?Oh, I did order the tea. Let me know when you are needing more we can split the order.......

    See ya and take care, Artsee

  • KKing
    KKing Member Posts: 425
    edited February 2009

    EWB  the apple cidar caps I found at the grocery store.   I am in Canada so it was the A&P,   I am sure a drug store should carry them as well.

    Lucy 47   I see the Naturpath tomorrow so I will mention this to her and get back to you.

    Karen

  • trigeek
    trigeek Member Posts: 916
    edited February 2009

    OMG Marejo, we went through the same scenario ! At bilateral mastectomy surgery 6 nodes were removed ( it was sentinel node biopsy tho) all looked clear. Then path said 1 had micro invasion, another had about .2 mm(just at the limit) ... my surgeon said I should be fine, my onc tho wanted me to get an axillary node dissection. Talked to a rad oncologist and did some homework and did rads. I actually consulted 12 docs, and everyone had a different opinion...

  • SJW1
    SJW1 Member Posts: 244
    edited February 2009

    I became a vegan to avoid the hormones with which they inject animals and the pesticides in their feed. I also take bio-identical progesterone to protect from recurrence. I supplement with D3, fish oil a high quality vitamin and DIM (which processes estrogen down non-carcingenic pathways.) I went to a preventative doctor and she is supervising all of this.

  • artsee
    artsee Member Posts: 1,576
    edited February 2009

    swalters......explain the reasoning of the bio-identical progesterone, in the words of your preventative doctor. I've been hearing more and more about this, but on the "fence".

  • kerrydee
    kerrydee Member Posts: 5
    edited February 2009

    I posted in the other forum a question regarding success with which foods. My mother had beast cancer many years ago but is now suffering with lung cancer. I have already had one ABBI biopsy and lumpectomy which fortunately turned out to be benign although the surgeon expressed "pre-cancerous cell" concerns.

    I wondered if you could tell me what you thought was the best contributing factors to your success.Many have here already and I thank you.

    Currently I am juicing with broccoli, carrots, grapes and spinach. I'm using lots of garlic and tempeh and making smoothies with strawberries and blueberries. I have also been making tea with spirilina and licorice root. I read beans were invaluable but havent read personal success stories from them.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    kerrydee,

    Diet is just one part of battling cancer naturally.  If you need to read on treatments not just prevention and side effects.  If you like I can PM you some good books. You also need to find a very good homeopathic doctor to help.

    Flalady

  • LizM
    LizM Member Posts: 963
    edited February 2009

    Kerrydee,

    I would be careful supplementing with licorice root as it is high estrogenic.  If you are trying to prevent breast cancer or a recurrence, you may want to avoid higly estrogenic herbs and foods. 

  • Estepp
    Estepp Member Posts: 6,416
    edited February 2009
    Florida Lady.. I would love a PM on your book list if you are willing..Kiss

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