TRIPLE POSITIVE GROUP

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    amylsp - yay!

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  • ang7894
    ang7894 Member Posts: 540
    edited October 2015

    Congrats --- amylsp

    Winking

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited October 2015

    Amylsp....Congradulations! Love, Jean

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  • rosesrx
    rosesrx Member Posts: 458
    edited October 2015

    amylsp, congratulations!!!

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited October 2015

    Thanks for the info on BCI SpecialK, I see my oncologist for the 5 year next week, interested in seeing what he says, I was not node negative, and I'll have to check the pathology to see if I was N1 or N2. I think I was N2, so he'll probably just recommend continuing.  I'm thinking of taking a couple of month break though to see how many of my "issues" are really from the AI, and if they would even go away if I quit taking it.  I watched the little video and the increased number of serious side effects from continued endocrine therapy were all related to tamoxifen - endometrial cancer and blood clots, Did I see that right?   I printed out the brochure to take with me.  Linda

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited October 2015

    Dang just checked my pathology, I was N2, so I believe that automatically puts me in the 10 year category, since the BCI video stated that it was for node negative or N1.Sad I still may take short break from the AI, then start it again after the first of the year.  

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    linda - typed out a response on my phone and then lost it, lol!  I was not node negative either, so I am not sure how that factors in - my MO does not feel it is an automatic 10 years because not enough of the data is in yet for AI drugs like it is for Tamoxifen, and he is worried about deleterious effects - I am already receiving Prolia injections for the worsening in bone density. I think his plan is to do a cost/benefit analysis next year, with one piece of the info the BCI test. I am not sure if they are starting to extrapolate data applicable for node positives from the BCI test, much like how Oncotype Dx was originally for node negatives also, but docs are starting to use it for 1-3 node positives. I will discuss in Dec with my MO at my regular 6-month check.  I still have another 8 months to go on Femara until I reach five years and a decision point.  One thing I did discover is that Medicare does pay for the BCI test and many insurance companies follow suit if they cover it.

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  • ashla
    ashla Member Posts: 1,581
    edited October 2015

    Very interesting article regarding a possible link between personal care products and Breast cancer...with a particular link to her2 pos and ER pos BC.....

    FYI only...not definitive by any means....


    http://www.ndtv.com/health/ingredient-in-shampoos-...

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  • colleen1013
    colleen1013 Member Posts: 50
    edited October 2015

    I finished my chemo in May and radiation in July, is it ok.to have a massage to relieve the muscle and joint pain? The massage therapist in my townrefuses to do massage on me as I am out of treatment just a couple of months.

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  • Jumpship
    Jumpship Member Posts: 305
    edited October 2015

    I had the same problem. I found a fabulous gal through http://www.s4om.org. Highly trained in oncology and the lymphatic system. I don't think my doc will ever clear me for a "regular" massage gal again.

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  • amylsp
    amylsp Member Posts: 188
    edited October 2015

    I'm actually a licensed massage therapist and there is no reason, in general, that a cancer survivor no longer receiving active treatment would be contra-indicated to receive a massage. You would want to avoid deep, aggressive work, of course. And anyone with metastatic cancer would need to be careful. But light Swedish, trigger point and/or acupressure, and gentle stretching and range of motion are all wonderful for dealing with joint and muscle issues. I wouldn't survive without my massages!

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  • colleen1013
    colleen1013 Member Posts: 50
    edited October 2015

    Thanks to minivan and amylsp, massage can really relieve my muscle and join pain/stiff, I will try s4om website

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2015

    Thanks for the information SpecialK. I may have to consult with your onco as mine isn't familiar with the BCI.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    Arlene - come on over, lol!

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited October 2015

    Countdown to last chemo on Monday, November 2nd! Whoohoo! They tell me that due to SEs tearing up my body (i.e. Big D, hemoglobin dropped so much needed tranfusion, and giving me really bad neuropathy), I'll only be having Herceptin and Perjeta for this last treatment! Boom! Then done with chemo and onto Herceptin only before surgery. Meet with the PS on Friday, Nov. 6th... we'll see what happens then... Warrior on, women! Warrior On!

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2015

    I certainly may SpecialK but I still have until next September for my 5 years on the Arimidex.  When I'm closer, I'll get your docs information.  :)

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited October 2015

    SpecialK I printed the BCI brochure out to take with me to my Oncology appointment next week, I had 5 nodes positive, and they were matted, etc.. so it bumped me to N2 :-(. My husband watched the video, it really helped him understand a lot more, he's kind of the "natural" cure guy. He sells hearing aids so sees lots of older people, he's always coming home with the stories of the lady that had breast cancer, refused treatment and is fine 20 years later.... the video did a good job of showing that there's a huge group of people that wouldn't benefit from additional treatment....and it helped him understand why some people can get away without treatment.  Interesting thing though is that he talks about natural cures, but when I said that I might go off of the AI for a while, he freaked.....


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  • LindaKR
    LindaKR Member Posts: 1,577
    edited October 2015

    ....SpecialK...and I don't have any osteopenia/porosis happening, my dexa's have been good.  My issues are severe pain and fatigue.  My daughter is getting married in January, and it would be nice to see if I can feel better for the next couple of month.  Plus taking the break will enable me to figure out how much of my issues are caused by the AI.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    linda - congrats on being the MOB, I am sure you would like the time leading up to the wedding to be comfortable and enjoyable!  Glad the BCI info was helpful, and yay on your good bone density!

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2015

    Ok ladies, I'm going to throw this out there and I'm ready for the bashing but I'd feel remiss if I didn't mention it. My surgery breast has been in pain for the last 4+ years since my surgery and the hormone sucking drug. This week, I started on a turmeric paste and I woke up this morning with no breast pain and no stiffness from the Arimidex? Could be a fluke but matters not, I'll take it.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited October 2015

    Name of the Tumeric paste ArleneA?

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2015

    I make the paste myself. 

    Recipe:

    Organic Tumeric Powder

    Water

    Unrefined, Organic, Cold Pressed Coconut Oil

    Black Pepper Fresh Ground

    Take 1/2 Cup Tumeric and 1 cup of water in a pan - place on low heat and simmer only. 

    Simmer for 7-10 minutes stirring in more water if mixture seems dry

    Remove from heat.  Stir in the coconut oil (or olive oil if you don't like the coconut (but organic, cold pressed) and FRESHLY ground black pepper (1.5 teaspoons)

    Mix well and allow to cool.  Store in a glass container.  Keep refrigerated for 2-3 weeks

    Can be frozen

    I take 1/4 tsp twice a day but will increase in another week.

    For more information, go to Facebook and request to join the Tumeric User Group.

    I can't believe how wonderful I feel and I've only been on it for a week.  Lots of energy but the no breast pain is wonderful.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2015

    image

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2015

    BTW, I suggest if you are interested go to FaceBook and search for The Tumeric Users Group and request to join. There is much information/scientific too. Tumeric is not to be used with many chemo's so if on chemo.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited October 2015

    Thanks ArleneA! I'm on chemo, but will start once off of chemo and healing... Most people I know started after they were done treatment... Thanks again!

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited October 2015

    Funny - I just read about Golden Turmeric Milk, you mix coconut milk with turmeric and some other spices and drink it before bed time, helps sleep and pain.  I just tried it last night, not sure it will work that fast, but I'm going to keep up with it, and definitely looking into the turmeric paste....thank ArleneA

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2015

    The paste has also alleviated all my joint and muscle pain from the Arimidex..  So easy to make and while the taste isn't the best, it's not so bad I can't just take my 1/4 tsp off the spoon.  Glad some of you have heard of it.  I'm so excited.

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  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited November 2015

    good luck, keep us posted jersey22.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited November 2015

    Counting down to last chemo tomorrow morning!!!!!!! Actually felt really good yesterday and was able to go have dinner with dear friends and enjoy it... That hasn't happened since early June, before this journey started. It felt good to feel human and to be amongst people. A bit tired today, but that's ok... LAST CHEMO! LAST CHEMO!

    Warrior on, women! Warrior on! You all rock!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2015

    jersey - yay

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