THINK BEFORE YOU PINK

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  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    After watching a dear friend with Small Cell Lung Cancer die from chemo overdose I vowed I would never take the stuff.  When I did the research on her disease, it said that chemo was of no benefit for this type of cancer, yet she had it up until the week she died.  She literally starved to death because she couldn't eat.  In addition her brain was radiated so that the cancer would not spread there; consequently, she lost all her cognitive function and was practically a zombie.  It was criminal what the doctors did to her in the name of medicine, and her family allowed it to happen.

    When I was dx last year, I told my family that I would never take chemo, regardless, and they have supported me 100%.  I value my quality of life over longevity, and will keep it as long as I can. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012
  • suemed8749
    suemed8749 Member Posts: 1,151
    edited February 2012

    tuckertwo: Our dx are very similar. I'd be interested in hearing what you do to prevent recurrence. Thanks.

    Sue

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Hi,

     I take a whack of supplements daily prescribed by my onc naturopath physician. He's awesome and very knowledgable. Most important are green tea capsules, Indole carbinol 3, quercitin. I also drink a glass of Green Magma which is organic barley grass.....

    I am weakly ER+. I tried Tamoxifen and the AI's but didn't like them. Naturopath says taking certain supplements acts the same as Tamoxifen but w/o the side effects. I just really don't like taking pharma drugs so for me this is a great alternative. So far, so good!

    What do you take?

    tuckertwo

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited February 2012

    Thanks for the reply! Right now, I don't take anything other than D3 and Calcium (fish oil sometimes.) I'm 100% ER/PR neg, so don't need the Tamoxifen effect. I was in the Neratanib trial for a year, and it's interesting to see what others with a similar dx are doing after tx is done.

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    tuckertwo:  Which supplements do you take that work the same as tamoxifen?  I just started on tamox last night and I'm not happy about it.  Would rather go the supp route.

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited February 2012

    tuckertwo - I would also be interested in what supplement acts like tamo. Just reading some disturbing info about it.

  • gardengumby
    gardengumby Member Posts: 7,305
    edited February 2012

    My naturopath told me something far different from yours! I am Er/pr+ and can not take tamoxifen. I didn't do either rads or chemo. I take indole-3-carbinole, curcumin, fish oil and ginger. As I am post-menopause I am on an AI, but if there are additional supplements that will help reduce risk of recurrence, I am all for it. My naturopath said there were not, so of yours says differently, I'd really like to know!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Hi ladies,

    Great to hear what you are doing supplement-wise!

    We are all different in our diagnosis and tumor type. I had 50% DCIS and 50% IDC and am weakly ER+, PR-. Different places define ER+/Er- very differently. I'm in Canada so less than 10% is considered weak. However I had an Allred test done and the ER I had was strongly positive.  I am also HER2+ which is considered more aggressive than HER-.  A good naturopath who knows his stuff will prescribe according to your diagnosis and other physical findings. So, as far as dosing or what particular herbs/supplements work for you, first ask your naturopath.

    These are the things I take. I won't post dosages because it's custom to each person:

    Green tea capsules EGCG, full spectrum Vitamin E, curcumin (which is another ingredient in the New Roots liver formula), vitamin C, Quercetin (one of the supplements used in the Tamoxifen substitution), Co-Q-10 (get ubiguinol CoQ10 - more bio available), grapeseed extract, R+alpha lipoic acid, turkey tail mushrooms (Bell makes a good brand) and/or red reishi mushrooms (hot water extracted and standardized), melatonin, milk thistle extract (very important to keep liver detoxed), Vit D3 (up to 3000 mgs a day - have blood checked x 3 months if over that dose), and 1-2 tbs of ground flaxseed. Flax actually binds to the ER receptor side and blocks estrogen. Also I take calcium 1500 daily with the D3, and a B100 complex with 100 mg of all the B vitamins.

    If weakly ER+ or strong ER+, avoid aswagandha, Hoxsey herbal teas. There is also a list of foods to avoid, you can google estrogenic foods and low glycemic foods.  

    I drink a glass of Green Magma from Organic Pharmacy in North Carolina. Recommend highly! It's organic barley grass in a fine powder. About $20 something for a big jar.Lasts for months. Cholorphyll helps clean and detox the body. My naturopath said that keeping the liver healthy is very important. This drink and the milk thistle formula are wonderful products. I do like New Roots Liver Formula but it's made in Canada; don't know if they sell it in the States? You can google the ingredients in it and get something similar.

    What else....oh....yeah.....so I take a daily vitamin and wild fish oil daily which helps balance the omega 3 and 6.

    I also take 600 mg of I3C (indole carbinol) daily but your dose may be different. You can take DIM as well, just more $$.  It's a good idea to keep the I3C in refer or cool place - it can go bad! Was sugggested to take DIM if travelling because it's more stable.  

    Naturopath was trying to lower my bad estrogen (estradiol) and these supplements did the job.

    You can request a hormone level test from your GP, then go from there. Be sure and get a naturopath who knows what he's doing. And make sure they are certified!

    You can also have your GP test your levels of DHEA(S). They should be low.

    Also avoid folate supplements (aka folic acid), at least in my ER diagnosis.

    I try to eat organic stuff and my grocery bill is outrageous :) but I planted a garden last year and that helped. My naturopath said to eat organic chicken and beef because of the hormones and antibiotics. Try to eat a lot of plant food, like peas and beans. Lots of fruit. The no sugar thing is a hard one :) but I'm trying. I have tried stevia and it's great.

    Exercise is very important, my onc said it's better than chemo!! Wow, that's something! I walk almost every day and in the spring summer do dragon boating.

    My naturopath didn't say any of this would absolutely give us a cure, but studies have shown (not studies the drug companies do :)) that these products do have value in reducing risk. The Japanese use AHCC (mushrooms) in their cancer clinics with great success.

    So, all I can say is my estrogen levels are balanced w/o the use of drugs and I'm very happy about that!!  My regular doc checked them as well. I hope some of these suggestions will help you gals not only with reduced risk of recurrence but also to generally boost the immune system and feel better!

    BTW my naturopath is an oncologist naturopath with over 20+ years experience - he knows his stuff! He has another book out now - "Naturopathic Oncology: Guide for Physicians and Patients. I believe the book sells for $40 and costs about $18 to ship to the States. You can check it out online. I find it very useful - it covers everything from A-Z.  You can check out any of the supplements above as well. If studies are done check to see at the bottom of the article if the study was funded in any way by Big Pharma. They aren't too keen on products that actually help the body :) and don't have SE's.

    Let me know what else you ladies take, and what else you're doing to stay healthy!

    Blessings,

    tuckertwo

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    Thanks for the info.  I'm taking a lot of the same things you are taking.  In addition, I take iodine, glutathione, MSM and a high dose vitamin C powder, Alpha lipoic acid, probiotics, and some minerals, because I was low in magnesium, plus digestive enzymes with each meal.  It's a lot of pills to stare down and swallow each day, but I figure I would rather do that than nothing because I wasn't going to do chemo or rads with my early stage low grade bc.

    I was scanned recently for my antioxidant levels and they are very high, so hopefully all this is going to pay off for me.  It does cost a fortune to eat healthy, but what is the alternative.

    Good luck everyone in your quest for good health! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Hi Kaara,

    I forgot to mention that I take probiotics as well in the form of acidolphilus and different strains of bacteria (yuck!) for digestion. Also drink aloe vera juice to help heal my innards from chemo.

    Glad your antiox levels are up!!

    Yes, I know what you mean about the pile of pills :) 3x a day for me....I have been putting some of them in a smoothie with macha tea and some fruit & yougart. Not bad :) Add some juice to make it palatable.

    How is the weather is FL? I have relatives in Ocala. 

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    Good idea about putting them in a drink...I'll try it with some of the larger ones that I hate swallowing!

    The weather here has been beautiful...probably a little cooler in Ocala...I'm further south in Ft. Lauderdale area.  Rain today, but we needed it.  In June we head north to western NC to enjoy the muntains and cooler weather.  Where do you live in BC?  I love Vancouver! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Hi Kaara,

     I do like NC and have been to Boone several times.There used to be the old Boone Inn family style restaurant - was an old home.  I have family in SC; they've been there since about the 1700's so I have a real connection with the place. I travelled to FL years ago - nice & green!  I especially liked St. Augustine and St. Petersburg. That's a good idea to head north when it gets hot & steamy in FL!!

    tucketwo

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012
  • Pompeed
    Pompeed Member Posts: 239
    edited February 2012

                 It does turn out that if one adds up the salary and benefits of the top Komen executives, there are an awful lot of miles people are walking and running and collecting money from others (a lot of Komen fund raising isn't done by Komen employees or under its budget; it's done by volunteers who are out raising money which they then turn over to Komen in exchange for priviledges such as being allowed to participate and gifts) which do not support breast cancer research or clinical needs at all but go entirely to support executive pay levels. 

                 That does not (and should not) sit well with some people who had raised money for Komen for years but never thought about exactly what their donations actually "bought" in terms of promising research or clinical care when put in Komen hands.

                  The scandal is not over.  Just getting started.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Good. It's about time. No more pinkwashing!!! I don't want a damn pink ribbon. I want a cure.

  • Pompeed
    Pompeed Member Posts: 239
    edited February 2012

    I never bought anyhing pink. Never seemed right to me that people who wanted to participate in the activities had to bring a minimum of cash.  Pay to play.  Very exclusionary.  And heaven knows that women with breast cancer are not feeling any too well in the first place and much of their time is taken up with appointments and travel and just trying to cope with the illness and life in general too. Much less have the energy it takes to go begging.  I also always thought that the long term financial commitment, in terms of percentage of gross revenues, applied to promising research and clinical needs was far too small.

  • AnneW
    AnneW Member Posts: 4,050
    edited February 2012

    http://www.washingtonpost.com/lifestyle/style/detailing-the-problems-of-breast-cancer-culture/2012/02/09/gIQA3DiT2Q_story.html?hpid=z5&sub=AR

    I had never defined this as a "culture" but it surely is. This article is great. And it's why I don't wear a pink ribbon.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I was just about to post the same article Anne did.  I do see an opportunity in all this - currently Komen gies $70,000,000. a year to Scientific Research.  That is a Huge amount of money - and is doing vital work - AND, we all know it's about time Komen gave a HIGHER PERCENTAGE of their revenue to Scientific Research.

    That's one of the things I think we DEMAND of Komen.

    When Nancy Brinker started Komen, it was a different world -true then editors wouldn't even use the word breast in a major newspaper!  Komen has made a HUGE difference.  AND, if there's anyone who isn't aware of breast cancer, I hope they remain well & happy hiding under their duvets - it's TIME TO FOCUS on PREVENTION, CAUSE, and a CURE.

    Lots of people working for Komen went "clucking crazy" when they made that huge marketing mistake -  don't think it will get that bad again.  We know that with cause related marketing, the company doesn't do it unless it brings VALUE to the company - fine with me, as long as they give MORE of the money they're making to Komen, AND IT GOES TO SCIENTIFIC RESEARCH. Prevention (breast screening, mammograms, nutrition information) especially for those who can't afford it on their own!

    Seems a real opportunity for Komen to relaunch and FOCUS on the CURE.

  • Pompeed
    Pompeed Member Posts: 239
    edited February 2012

                Never bought pink, never wore it, never got sucked in. 

                It's wrong headed to talk about a cure for cancer.  Any kind of cancer.  Increasingly better options for management, yes.  Increasingly better options for early detection, yes.  Better options to represss the biological sequences at the various stages where the cell division goes wonky, yes.  Better use of mediators to work towards effective means of prevention, yes.

                Cure?  No. 

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited February 2012

    Funny, because I don't even agree with Ehrenreich, who argues that the pink movement makes BC seem all rosy and happy. I have always spurned the pink ribbon as:

    a) Pure kitsch (insult my morals, but not my taste, please. Tongue out)

    b) Making women look weak and pathetic, like babies. It insulted my feminism.

    c) Upholding the status quo. Instead of acting strongly and boldly, pink has appeared like a nice, pliant smile that said: "If we're nice and smile will you give us a penny so that we can cheer on the establishment to continue its costly pharma trials." Whereas we should be like the AIDS "Act Up" group that threw Molotov cocktails, in a manner of speaking, and demanded that government and industry think outside the box to find an effective treatment.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Athena,

    You're right. We need to be more - militant? AIDS got way more publicity and funding than breast cancer ever has, am I right? Research and advanced medication have slowed down and in some cases CURED AIDS. Why can't breast cancer cure advocates get everyone on the same page, stop the pink ribbon so-called fund raising nonsense and get real? Breast cancer is every bit as deadly as AIDS and far too many women die every year.

    I would like to know this: what is the incentive of Big Pharma to cure cancer since they make billions of dollars from cancer drugs every year?  Maybe we should do some protesting rather than the usual meek and mild runs and walks for the cure??!!  IMHO. Are we being marginalized because we're women?

    tucker

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    In my opinion, breast cancer is being treated as a 'woman's disease' . If men got breast cancer the way women do I believe there would be a huge outcry. Would men mess around with blue ribbons and fun little walks and runs for the 'cure'? Women are given hormones for various reasons, usually to keep men happy (makes us less moody and crabby, intimate relations improve) but hormones can and do cause breast cancer.

    We need to stand up and take this fight to a whole new level. As Athena said, the pink ribbon makes us look cute and compliant. 

    tucker

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited February 2012

    I think we need to take the gender out of it and keep the humanity only. A liver is a liver is a liver. Same goes with a brain and lungs. And when those stop working, people die. That is what the message should be. To many, losing breasts is a shock, but frankly the real horror is less that than losing vital organs. We all stand to face those dangers whether as present stage IV-ers or as potential future ones.

    Breast cancer should entail a crusade against DEATH. Period.

  • dreaming
    dreaming Member Posts: 473
    edited February 2012

    Estee Lauder and Avon give a large portion to research, Lauder was the first to do so; Komen gets money to allocate, not their money, they spend around 1 million in PR.

    Suggest go to NBCC and research where the money goes, and where it comes from.

  • dreaming
    dreaming Member Posts: 473
    edited February 2012

    I have to add, in 1991 when we at NBCC started to lobby and being more militant, as survivors we did not have any experience, the doors at Washington were close to us, volunteers from AIDS, and  Women groups taught us how to work,lobby , etc.

    Every year NBCC works very hard to get money from the Defence fund to be allocated to BC, before 1991, there was almost non existent, tech that did mammograms were not certified,insurance refused to pay reconstructions, we changed how BC is treated, we went to Federal Courts to get many things., we lobby to get new drugs available to patients.

    Repeat go to NBCC that stands for National Breast Cancer Coalition and see how far we had come.

    How the money is used, and specially how to get involved.

    At the beginning we were also taught by scientist to learn about breast cancer, I was present when we had the doctor that was involved in the discovery of BR1,and BRC2..

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Breast cancer is also a worldwide problem. It trancends race. Perhaps multiple organizations could work together, pool their knowledge and resources and come up with a cure.

    tucker

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Sign up for free webinar - get your Think Before You Pink Toolkit - free - lets end breast cancer with awareness!!

    https://www3.gotomeeting.com/register/682646062

    tucker

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited February 2012

    tuckertwo - thanks for the link. I have just signed up for the webinar. Hoping to gain lots of information.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    You're very welcome. I hope it's helpful!

    tucker

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