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  • rgiuff
    rgiuff Member Posts: 1,094
    edited February 2011

    Hang in there DesignerMom.  Losing the ovaries can have many harmful effects to the rest of your body and I think many Oncs think only about the cancer. Hopefully, you find the other Onc to be more in line with your way of thinking, so that you feel more supported in your choices!

    AnnetteK, let us know how you Onc appt. goes.  Most likely another AI will be recommended or tamoxifen, unless you've already done that.  And hopefully, you will still be seen, even if you don't follow their protocols.  I'm still toying with the idea of stopping my tamoxifen soon, after 2.5 years completed, and am wondering the same thing, will my Onc still agree to see me if I do that?

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited February 2011

    Marianna, I feel the same. I have been almost robotic, so focused on getting through treatment. Only recently, have a few tears flowed. I think I somehow numbed myself. Maybe a sad movie is a good idea....I need to get that lymph flowing (in addition to the rebounder of course)

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  • annettek
    annettek Member Posts: 1,640
    edited February 2011

    I got my estrogen results back and they were a lovely 16 (after 5 weeks on the DIM, etc)...can't go too much lower..here is the kicker..the onc said see the verypills you were scared to take are working..OMG....she didn't give me a chance to tell her the horrible SE of the one dose of arimidex-she thought I had been taking them from the start...so i said..you were right doc (waiting for my horns to pop out)..and since i like the numbers can you keep testing them every three months so I know the *pills* are working...and she said I sure will....so, here is the deal...I will continue my regimen of DIM, grapeseed, turmeric, etc and she will keep thinking I am taking the AIs and testing my levels to keep me in line...god, why does it have to be this way? but so be it. any means neccessary to not only survive but thrive. I am still going to go ahead and order a saliva test that measures over three days to get a definite baseline of all the major hormones including cortisol am and pm. But I like the fact of having the tradtional blood tests ordered by her every 90 days. Am trying to monitor the levels the same way they do in the clinical trials. I never wanted to be a damn scientist...but I will do  what I have to for as long as I have to.

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  • Luna5
    Luna5 Member Posts: 738
    edited February 2011

    Geewhiz...Thank you...I'm sure you are right it was Rancho la Puerta....it was so long ago that there was no talk of organics and there were no evening talks...there was yoga and lots of exercise classes and of course the early mountain hike.  Glad to hear it still exists and is better than ever!  When I was there, there was an older woman who worked for Laura Ashley in NYC who came every summer for a month to take off whatever pounds she had put on during the year and to relax and recharge...sounds like a plan!  There were women who called taxi's and "went over the wall" to get "real food".  I didn't go all the way there to sabotage myself...but it was fun hearing their stories.

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited February 2011

    annettek-  I will probably join you in the "outsmart the Onc" game as I don't want to surgically remove my ovaries and take AIs (can't take Tamox because of clots). I am meeting with a new Onc next week.  If I get the feeling she can not be supportive monitoring me even if I don't take AIs, maybe I will have to work the system too.  May I ask how much DIM you are taking?  I have started taking Iodoral and other supplements.  DIM is the last one I wanted to add.  Also, where do you get the saliva hormone tests?  

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  • Luna5
    Luna5 Member Posts: 738
    edited February 2011

    RachelKa...Thank you!  Enjoying reading all the info on that link.

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  • Heitzmidan
    Heitzmidan Member Posts: 1
    edited February 2011

    Hello my beautiful natural girls!!  I am so torn about starting herceptin.  After my lumectomy in Jan I opted out of rad/chemo and herceptin and started treatment at an alternative healing clinic in So Cal.  My cancer was aggressive...but I caught it early and it didn't spread to the nodes. I was sent to an Onc Doc to see what chemo drugs he would suggest....then I had my blood sent to Germany for chemosensitivity testing and circulating tumor cells.  I really feel that I am doing the right thing by not doing conventional and refused to be scared into doing something I am not comfortable with. I guess my question is how many of you out there have healed yourself alternativly...without chemo or radiation or other drugs.  Thanks so much!!!!

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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited February 2011

    Heitzmidan, Welcome to our forum and the Natural Girls thread. I'm sorry you needed to be here but you will find lots of help and support.  As we always say to new members, it's the club no one wants to join.

    I have no help to offer for your dilemma as I don't have HER2+ or estrogen negative. I just wanted to say hi. 

    I just wrote my story of not completing chemo on the 'PARP inhibitors' thread and if you read it you will see that forgoing chemotherapy is highly controversial as people quite understandably don't like to think people might be influenced to say no to treatments that could possibly save their life.

    You ask how many have saved their lives with alternatives, but as nearly everyone has surgery it's impossible to know how many would have gone on to stage IV without their adjuvant alternative or conventional treatments.  I haven't heard of too many who have gone into long term remission from stage IV with any treatments though there are quite a few who have celebrated 10 years still surviving after conventional treatments.

    I hope someone can answer your HER2+ question.

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  • RachelKa
    RachelKa Member Posts: 174
    edited February 2011

    Jainey the tincture for edema is  called RDI. It's a  compound and all the ingredients are in Chinese. Let me know if you want me to list them all.


    Rachel

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  • RachelKa
    RachelKa Member Posts: 174
    edited February 2011

    Jainey the tincture for edema is  called RDI. It's a  compound and all the ingredients are in Chinese. Let me know if you want me to list them all.


    Rachel

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  • Jainey
    Jainey Member Posts: 109
    edited February 2011

    Rachelk - how would I find out more info on it? Chinese medicine is one avenue that I have not researched ... RDI? Is that what I would google? So nice of you to help me out here, I am just about at the end of my rope .. lots of deadends with my research. Any info is greatly appreciated.

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  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited February 2011

    Annette- Incredible! And the onc patting herself on the back to take credit for it is priceless....

    It's sad that we have to resort to things like that, but it's the way things are in our medical world. Good for you that you've taken charge and that YOU drove your estrogen levels down!! GOOD JOB!

    P.S. The horns might make a cool fashion statement, too....

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  • RachelKa
    RachelKa Member Posts: 174
    edited February 2011

    Jainey,

     I get RDI from my herbologist. She will only "prescribe" if you are her patient, but I'll ask her if there is somewhere else you can pick it up. I pay $13 for whats about a 9-day supply. Here are two sites recommended to me that sell reputable herbal products. I learned about them from a nurse who'se an herbologist and the researcher for a medical doctor very well known in integrative cancer care. IN addition to the sources to buy herbs, I'm copying and pasting info that came from the nurse who referred me to most of these places ...

    http://www.cancerrd.com/FAQs/FAQ17.htm

    From Linda B (nurse and herbologist) 

    Adaptogen herbs support the immune system, are anti-oxidants and are overall safe to use over time. They also balance the neuro-endocrine systems.

    One other herb I would add is Turmeric. It is a powerful anti-oxidant and has been used in situations with cancer.

    The first web site / company is Oregons Wild Harvest at http://www.oregonswildharvest.com/

     Some products they carry are:

    Astragalus / Reishi caps

    Ashwagandha caps

    American Ginseng caps

    Turmeric caps

    Also for your father's sensitive digestion they carry licorice and slippery elm caps (soothing and healing to GI tract.)

    They carry many, many brands.

    Planetary Herbals Reishi Mushroom Supreme

    Host Defense Reishi (this company is very high quality and they carry several different types of medicinal mushrooms)

    A good female tonic and also an adaptogen is Shatavari, it is carried by Himalaya USA.

    Also they have many whey protein powders. 2 brands that looked decent were Bluebonnet and Country Life. You can look at all the ingredients for each product.

    Also, if you get a chance, will you check out my webiste? I do a bit on diet, herbs, supplements and other forms of complimentary cancer care as well as on traditional medicine and other things.

    Talk again soon!

    www.1UpOnCancer.com

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited February 2011

    DM, you can search for stores that carry So Delicious at www.sodeliciousdairyfree.com

    I take 200mg of DIM, 400mg grapeseed extract, 500 turmeric, 500mg myomin and some others. Those are the AI-like ones, though.

    I found SO Delicious cultured coconut milk at my health food store and bought a bunch of flavors. Will update on taste after I try them.

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  • MBJ
    MBJ Member Posts: 4,352
    edited February 2011

    RachelKa:  Great website!

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited February 2011

    BarbaraA-  Thanks for help with the DIM and coconut milk too!  I'm off to stock up on vitamins.  I sure do run out quickly.

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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited February 2011

    Can anyone else respond to Heitzmidan?  She's an alt sister making her first post here asking for help about 10 posts up.

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited February 2011
    Heitzmidan-  As I am HER2- and did elect to do surgery, chemo and rads I really can't give you any advice.  For me, it felt right to balance some medical and some alternative.  I am now following totally nutritional and lifestyle strategies.  As you are HER2+, perhaps some of those ladies could give you good feedback on Herceptin.  I know there is a thread called "HER2+ Cancer - No need for Tamoxifen??"  If you put that in the search box you should find them.  Wishing you good luck with your decisions.
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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2011

    Heitzmidan ~ I'm not Her2+ either, so can't address your question from that point of view. What I can tell you is that, like many women here, I was very health conscious prior to developing bc.  I ate clean, used a lot of supplements, was athletic and active -- and still developed bc.  So when it was time to decide what to do, after consulting with multiple docs and reading ad nauseum for weeks, I made a conscious decision to put trust in conventional medicine for my initial tx -- mostly because I'd already been doing holistic things and felt my body really needed shaking up.  One of the things that led me to choose the medical team I did (UCLA) is that they have a full integrative department, so I felt they really understood CAM -- yet they still felt I needed more than that.

    But we each have to educate ourselves about our specific bc dx and do what we believe is best for our bodies. 

    If you have any questions about the path you've chosen, and if you're in Southern CA, perhaps you'd consider getting a second opinion @ UCLA, where Dr. Slamon, the creator of Herceptin is.  He and all of the oncologists there are probably more expert on Her2+ bc than anyone else in the whole country.  And, from my personal experience, they never used scare tactics or pushed -- just explained my options, but always left the choices to me.

    Sorry this may not be what you were hoping to hear, but I think you will find that quite a few of us here reluctantly and after much thought did some conventional medicine, perhaps with alternatives to ease the treatments, and are using CAM to heal and rebuild.     Deanna

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  • impositive
    impositive Member Posts: 629
    edited February 2011

    Heitzmidan, I was her2+ as well, no nodes involved.  I had a lumpectomy and decided against rads and chemo with Herceptin.  I decided to make a lifestyle change and boost my immune system instead. Not necessarily a popular decision but one I've made with no regrets. I, like you, felt like it was the best thing for me.  I am only a little over a year from diagnosis so I'm not really one who can answer any longevity questions but I just wanted you to know you are not alone.

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  • Luna5
    Luna5 Member Posts: 738
    edited February 2011

    I'm still not sure I understand what "RDI" is.  ???

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited February 2011

    Update on the So Delicious cultured coconut milk: it is absolutely yummy!

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  • Yazmin
    Yazmin Member Posts: 840
    edited February 2011
    Heitzmidan: Have you seen wornoutmom's new thread entitled "Survivors who have used only alternative treatments"? 
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  • Luna5
    Luna5 Member Posts: 738
    edited February 2011

    For loose leaf teas....what is the best tea strainer?  I bought one and then realized it is plastic.

    I'm assuming the plastic ones are out, so is stainless steel best or something else?

    Would love to hear from someone who has a brand they recommend.

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  • Lili46
    Lili46 Member Posts: 130
    edited February 2011

    Hi Ladies...I've been trying to catch up on all the latest posts. Boy this is a busy thread! I had to comment on coconut milk ice cream. Luna and Larry's Coconut Bliss non-dairy ice cream is delicious! It comes in a variety of flavors...vanilla, dark chocolate, chocolate peanut butter, and many more. I get it at Whole Foods. Health food stores carry it also. 

    Harney and Sons sells some great loose leaf teas...Chinese and Japanese green teas along with oolong, black, etc... 

    Li 

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  • EastCoastGrl
    EastCoastGrl Member Posts: 282
    edited February 2011

    I second Harley & Sons! I have a bunch of their loose tea. Very good. I've been drinking it for years.

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  • samsue
    samsue Member Posts: 757
    edited February 2011

    Luna5, i actually use a coffee press for my teas since I also like to use the loose leaf varieties. Mine will make at least two cups at a time, and is made of glass. It works like a charm....

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  • Luna5
    Luna5 Member Posts: 738
    edited February 2011

    samsue, thank you so much.  I just googled glass coffee press and there are plenty of brands.  I have never heard of these before :)  Do you recommend the ones with stainless steel plungers?  or some other kind?

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  • Luna5
    Luna5 Member Posts: 738
    edited February 2011

    Li...thanks for the suggestions!  Have tried and loved ice cream made of coconut oil and will definitely try to find Luna & Larry's.  Love the name!

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  • annettek
    annettek Member Posts: 1,640
    edited February 2011

    i just bought some fattening Phish Food by Ben and Jerry! I was so judicious while grocery shopping...lots of nice chicken breasts, veggies, etc and then, AND THEN...my eyebrow cocked up and I said to myself...yep, gonna buy a quart....hahahah at least I got the kind made with yogurt:)

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