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Comments

  • seaotter
    seaotter Member Posts: 642
    edited April 2010

    ahhhh anon, that is so sweet!!!! Thank you Kiss. You are the best!!!!!!

    Love you!

    Patty

  • hlth4513
    hlth4513 Member Posts: 161
    edited April 2010

    Congrats, Patty!

    Go Blue!

    Beth

  • seaotter
    seaotter Member Posts: 642
    edited April 2010

    Thanks Beth!!!!! Kiss I never thought in my wildest dreams that blue boobs would ever be so important to me Laughing.

    Patty

  • Luna5
    Luna5 Member Posts: 532
    edited April 2010

    Yay Patty!  Forget pink, go blue!

    Anon...I miss them too. Been missing you also.  Glad you are back!  

    Need advice on how much calcium to take.  I keep reading conflicting info on whether to take it at all, that it interferes with other things.  I know you have said in the past that DIM interferes with iodine, but what about taking calcium?  If so, which kind?  Calcium Citrate?  I already take Calcium D-Glucarate 250 mg that also has calcium as calcium d-glucarate, dicalcium phosphate.  Is the Calcium D-Glucarate enough by itself?  I know with this I also need magnesium and K2.

    Advice?

    Thanks.

  • painterly
    painterly Member Posts: 266
    edited April 2010

    I read somewhere on these threads that we are supposed to take melatonin. Any idea how much? I noticed that it comes in 1 mg. and 3 mg. tablets. I read in Dr. Randolf's book "Hormone Hell to Hormone Well," that it is an estrogen blocker and works like Arimidex but without the harsh side effects. But he didn't say how much to take. 

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2010

    Congrats on the great therm, Patty!  I'm really happy for you!  

    Wanted to share something I just received from the EWG.  Most of us already know about The Dirty Dozen, but this new list for 2010 has some changes to it, plus the comments by Dr. Andrew Weil on what pesticides can do to us are interesting:

    http://www.foodnews.org/sneak/?utm_source=shopperrelease&utm_medium=email&utm_content=image&utm_campaign=foodnews

    I don't know if I'd mentioned this, but when I'd asked Dr. Hardy @ UCLA about using a surfactant to wash produce, she told me that it's impossible to remove pesticides from some fruits & veggies on the Dirty Dozen list, like strawberries, because the pesticide actually gets into the fruit itself.  So no amount of soaking or washing will make it safe to eat.       Deanna

  • seaotter
    seaotter Member Posts: 642
    edited April 2010

    Thanks Deanna for the congrats! Also thanks for the link. I have found lately that I won't buy berries unless they are organic. What a shame about all those pesticides, makes me sick Yell.

    Love to all, Patty

  • seaotter
    seaotter Member Posts: 642
    edited April 2010

    Oh, I forgot, thanks Luna. I love the "go blue" lol!!!!

    As far as the calcium goes, I don't take it anymore. I had read somewhere that it can make cancer grow. I don't know if that is true. I take Stronium (spelling?) instead. You could pm Nan and asked her questions about it. She had a lot of info about it.

    painterly - I have read on these boards that some women take 20 mgs of melatonin. That would never work for me! I try to take 3 mgs and have some wild dreams with that dose. I think I would become comatose with 20!!!!! It is also very important to have your bedroom very dark. That helps with melatonin levels. I cover up all clocks at night and have dark curtains and shades up. You could also sleep with a mask on. Try to get total darkness. Cool

    Patty

  • hlth4513
    hlth4513 Member Posts: 161
    edited April 2010

    Painterly-

    The studies on melatonin and breast cancer used 20mg. pMelatonin has lots of benefits, but as far as the studies used to compare versus the aromatase inhibitors - a dose of 20mg was used. LIfe Extension foundation, I beleive, on their Breast Cancer protocol says to use between 3mg and 50mg - which is a huge range.

    I take melatonin, and I found that I could not start out with a high dose or I had very vivid, wierd dreams and I was groggy the next morning. I have found that for me I increased my dose gradually and I have found that staying about 15mg works best for me. I also have found a big difference between formulations. I personally do much better with capsules than with tablets. I had a very difficult time with sublingual.

    Beth

  • Suzanne3131
    Suzanne3131 Member Posts: 2,000
    edited April 2010

    Yay Patty!!  So happy to hear about your bluebies!!  And thanks for those great links!

    Thank you, too, Deanna, for the link!  Very informative and easy to watch...I forwarded it to a few friends.

    Thanks all for the discussion about melatonin.  I really thought it was just a sleep aid...didn't realize there was actually a bc connection.  Since I am a good sleeper, I really never would have thought of taking it...but now I will!  

    Y'all are the best! 

  • Nan
    Nan Member Posts: 49
    edited April 2010

    Dear seaotter/Patty,

    Can you tell me if insurance covers the thermograms and if not what is the cost? I know that I will never have another mammogram, and now I am searching for my daughters as to the cost.

  • seaotter
    seaotter Member Posts: 642
    edited April 2010

    Nan - Of course insurance does not cover the therms. I think I paid 150.00 and that was for two therms to get a baseline. The most important thing is to make sure the person reading it is very competent. I, too, will never have another mam. I sure hope this helps you.

    Patty

  • Nan
    Nan Member Posts: 49
    edited April 2010

    Patty,

    Thanks so much for your quick reply. I found a place right here in Altoona, PA..UNBELIEVABLE!! But, it says mobile? I am going to call there tomorrow.

    Mobile Service Provided by Three Rivers Thermography

    Center for Holistic Living
    Brenda Mantella, ND
    Pleasant Valley Shopping Center
    Altoona, PA 16602

    Contact: BJ 814-944-6330

    This is the home page of the link. What do you think?

    http://www.thermologyonline.org/default.htm

  • makingway
    makingway Member Posts: 465
    edited April 2010

    Patty-that's great news. I'd much prefer a thermography over a mammogram.

    Deanna-I saw that new list from ewg.org also. Thanks for posting that link of Dr. Weil's. FYI, the kind of pesticide you are referring to are called systemics. The pesticide is absorbed by the plant. It doesn't just cover the surface of the plant. It's been a long time since I've studied that stuff, but I believe systemics are taking up by the root system of the plant.

  • painterly
    painterly Member Posts: 266
    edited April 2010

    Thanks Beth and Patty.

    I have been taking it for two nights now and have noticed that it is a sleep disturber.

  • chelev
    chelev Member Posts: 417
    edited April 2010

    Hi, ladies.  Well, I think I am making progress - I have been trying the Brevail and it is helping defintely with the hot flashes, so that is a good thing.  I also have discussed with and convinced my onc's office that we need to test my estrogen levels - after all, since the tumor was formed before I had my remaining ovary removed in 1997, wouldn't it make sense that my levels must be pretty low now, thus eliminating the need for hormone therapy now?  Also didn't know about melantonin - I've been taking it to help me sleep since I have been struggling with fareston-induced insomnia, that is also getting better now that I'm off that stupid drug - but if it has benefits for us bc girls, all the better!

  • painterly
    painterly Member Posts: 266
    edited April 2010

    Melatonin

    I took it for 2 nights and kept waking up. So I discontinued using it.  I was recently informed that the body can produce natural melatonin if we sleep in a very dark room (no light from the clock etc.) If the room is not dark enough we can wear a mask.

    (Just reading back, I see Seaotter mentioned the dark room).

  • anondenet
    anondenet Member Posts: 261
    edited April 2010

    Hi Luna,

    From my research, calcium supplementation is a mistake. It displaces magnesium which is a harder nutrient to get in diet. Also, calcium interferes with the kidneys and may deposit itself in places we don't want it (coronary arteries, brain). Also, Dr. Abraham says calcium interferes with iodine absorption. Countries where people consume the most calcium have the most osteoporosis. I would stick with D3 and magnesium if you have bone concerns.

    BUT calcium D-glucarate isn't a calcium supplement (calcium is just there in negligible amounts to bind with the glucarate). So you're fine!

    I admire how concientious you have been in putting together information!

    Keep checking in so we know what you're up to.

    xo

  • Melizzard
    Melizzard Member Posts: 24
    edited April 2010

    Hi Amber,

     I was originally dx in Jul '99 and had standard chemo x 4, stem cell transplant, and rads to both sides of my chest AFTER I had a bilateral mastectomy.  Talk about NOT natural!  UGH!  So, in '07, I was dx with mets to peritoneum and bone marrow.  Have done alternative ever since.  No more chemo for me.  I had a really rough go of it for a while, but am very stable and damn near remission now!  My oncologist is totally impressed ... and so am I ... and SO very thankful!  

     Thank you for starting this thread ... I've been flamed out of more groups than I can count because of my alternative choices.

    xxoo

    Melissa

  • Melizzard
    Melizzard Member Posts: 24
    edited April 2010

    The Life Extension Foundation says you can take up to 50mg melatonin per night, safely.  And they also say that with breast cancer, we should take at LEAST 20mg per night.  That's how much I take ... have for 12 years now.

     xxoo

    Melissa

  • althea
    althea Member Posts: 506
    edited April 2010

    Patty, congrats on your blue therm!  I haven't found a place to get one where I live and I skipped my mammo last year when it was time to get one.  My tumor didn't show up on it the first time anyway, and the sonogram showed only 'suspicious shadowing'.  That, combined with a doctor who apparently had never heard of lobular bc, I reckon it's probably a miracle that I'm still here to complain about how lousy my 'early detection'  efforts were! 

    Melissa, I am so happy to hear of your success!!!  I'd love to see you share you story here.  Much of the bco forums are filled with people pursuing mainstream treatments, and some of the threads in this section are hounded by naysayers, but this particular thread has nice long track record of peaceful coexistence.  

  • Nan
    Nan Member Posts: 49
    edited April 2010

    Dear Melissa,

    Your printed words are music to these old earsSmile My daughter has said many many times, that "if this beast returns" she will never ever take chemo or rads again, for if it didn't get it the first time how the hell could she believe that it will get it the second time!! So to hear that you too chose the alternative route and it is 3 years now....absolutely fantastic!!! I am just sorry that you had to deal with this dam*** C again.

    Can you post what you have been doing? My daughter and I are both Life Extension members. There is so much valuable information to be found there. Oh... and your oncologist is impressed? WOW!!

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2010

    Melissa, I'm thrilled to hear that you're doing so well!  I would also be very interested in what you're doing.  Diet?  Supplements?  What else?   And are you seeing any naturopathic or alternative doctors?    Deanna

  • Nan
    Nan Member Posts: 49
    edited April 2010

    Links for Strontium. Some good...some bad.I had a doctor recommend that I go on Forteo, after refusing to take Fosomax anymore. I just smiled and said nope...I don't think soWink I wish that women would do more reading on the bisphosphonates and then they could make a more informed decision. They are really bad news...bad drugs...Cry What makes me so sad is that many women dx with bc are on them. As if these women do not have enough pain and suffering, and then they add one more potentionally dangerous drug to their dear bodies...Cry My question is why?

    http://www.worldhealth.net/news/strontium_breakthrough_against_osteoporo/

    http://www.medscape.com/viewarticle/538026

    http://www.tahomaclinic.com/strontium.shtml#art

    http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/saveourbones-book-chapter-on-strontium/

    edited to add a paragraph from this link..

    http://www.newswithviews.com/Howenstine/james59.htm

    Osteoporosis

    High doses of Vitamin K2(45 mcg to 90 mcg. daily) were used to successfully to treat osteoporosis[12] in Japan. These doses are 1000 times the RDA dosage. No side effects were seen. This therapy for osteoporosis should work well and using Synergy K is simpler than other therapies for osteoporosis. The addition of Vitamin D-3, calcium, magnesium, boron, strontium and silica(horsetail) will supply additional key nutrients needed to construct bone.

  • vivre
    vivre Member Posts: 881
    edited May 2010

    Wow Nan, I was just checking in on you gals, and I see you posted something on osteoporosis, just as I am doing on my site. Like minds think alike! I will have to add your links. I am putting this info in my "question of the day". I have been so busy add information. I know it is overwhelming to some of you, but I just feel it needs to be sorted through so that people can learn from our experiences. I think we finally have it better organized.

    Also, I wanted you all to know that I went to the most incredible symposium this week about the effects of mercury. Did you know that they have isolated 4 common bacterias from extracted root canal teeth that they have shown causes breast cancer? Have any of you NOT ever had a root canal or tooth extraction? Do you still have mercury amalgams in your mouth? The amazing docs at this forum expalined why they are so toxic.  I had noted so much information my head was spinning, and I will not go into any more of it here, but if you want to read my entire blog on the symposium (which I hope you will do), you know where to look. If you do not want to check out my blog, at least read Dr. Hal Huggins book, Uninformed Consent.

  • Nan
    Nan Member Posts: 49
    edited May 2010

    Dear Melissa,

    If it would not be an invasion on your privacy, may I ask what your original dx was? My daughter was dx with TNBC..triple negative breast cancer, StagellA, 0/3 nodes, multi focal. I also have been "reprimanded" on another site for posting about alternatives, what my daughter is doing, and even complimentary approaches. So..I came hereSmile 

    There is a script for Strontium, and that is the "bad".

    Vivre...I meant to post the links for osteoporosis on your web site and just had not gotten to it yet.Wink

  • rgiuff
    rgiuff Member Posts: 339
    edited May 2010

    Melissa, welcome and congratulations on having the courage to stick with your own plan and effectively get rid of those mets!  I also would love to hear what you've been doing.

  • rgiuff
    rgiuff Member Posts: 339
    edited May 2010

    Melissa, welcome and congratulations on having the courage to stick with your own plan and effectively get rid of those mets!  I also would love to hear what you've been doing.

  • Merilee
    Merilee Member Posts: 734
    edited May 2010

    Just wanted to let you all know that I finished my chemo and I survived it just fine. Side effects were minimal as I used natural methods to protect my organs and such.

    Now time to detox and get my life back.

  • my560sel
    my560sel Member Posts: 399
    edited May 2010

    Merilee: Yeah, that you finished chemo and that natural methods helped get you through it with minimal side effects!!!! You must be so relieved and happy to be able to get on with your life. (((hugs)))  Terri

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