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Holistic tx only--what Ive done

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  • trishyla
    trishyla Member Posts: 698
    edited September 2021
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    Wishing you all the best, pipers_dream as you make the decision as to what's best for you. We're here to support you no matter what.

    Trish

  • purple32
    purple32 Member Posts: 1,767
    edited September 2021
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    Hi all


    I went to a nutritional functional dr yesterday,... he said I need much more protein and suggested WHEY.

    When I looked it up, it contained SOY!

    I street clear from soy?Can anyone suggest a better source ?>
    Many thanks!

    Laurie

  • hersheykiss
    hersheykiss Member Posts: 663
    edited September 2021
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    Laurie, Vitamin Shoppe carries lots of soy-free protein powders.

    https://www.vitaminshoppe.com/c/protein-fitness/pr...


  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2021
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    Purple32, I favor Tara’s Whey, which most health food stores carry.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2021
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    thank you Trishyla and all my friends on here for your support. That’s not an easy thing to get when you’re going your own way. Another dark secret of alternative is that you’ll never be comfortable in a cancer support group and will need to start your own. We did that a few years ago, using meetup as a platform and the first meeting was rather crowded with some strange new age types, like one lady who wanted to come in and rail on about how the govt is trying to kill us all with “biofilm.” She got a frosty reception and after that we only had a select few who were actually serious. Our leader, my friend, died three years ago and that was the end of our group but it was really helpful.

    The news from the pet scan is bad. I have extensive lesions in my liver and could go at any time. In a way this is a bit of a relief because I was afraid that I’d linger on with greatly increasing pain in my bone Mets but the liver thing will insure that this doesn’t go on too long. I’m ok but it was hard telling my family.

    We’ve called my daughter from Chile to come home but we’re going to run into difficulty because she will need permission to travel out of the country...they still have travel restrictions due to covid. This will require a note written from my doctor and I explained to the nurse yesterday that I need it stat but he didn’t write it yet so I’m going to drive the hour over there today and wait in his office until he delivers. I am not happy with this. The good news is he won’t have any trouble writing a Spanish translation since he’s from Colombia.

    And now, working a list to get those affairs in order...things I can easily do that others will struggle with. It’s difficult because of my lifelong issues with ADHD and the fact that when I was really freaking out there for awhile I let too many things go. Like paying federal taxes. 🥺 ugh. But I have peace with this and I regret none of my decisions. If anything I did was a wrong decision, it may have been taking Ibrance because it seemed to really speed up my cancer, like pouring gasoline onto a fire.

  • trishyla
    trishyla Member Posts: 698
    edited September 2021
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    Oh, pipers_dream. I'm so very sorry to hear of your worsening test results. It is a very hard thing to hear. But it sounds as if you are in a place of peace, calm and acceptance.

    I'm so very glad your daughter is coming. My sister and I cared for our mother before she passed from lung cancer. If was the most loving, amazing, hilarious and heartbreaking time of my life. Being there for her was the best gift we could have given to the woman who gave so much to us. I hope you and your daughter are able to share a time like that.

    I know the possibility of pain is very scary. Have you looked into hospice? They are there to help you to live as well as you can for whatever time you have left. That includes making sure you are comfortable and pain free. I know Medicare and Medicaid usually cover the entire cost.

    I wish you peace and love and joy in every moment left to you.

    Trish

  • chicagoan
    chicagoan Member Posts: 976
    edited September 2021
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    Dear Pipers_Dream,

    I am sorry to hear this news. But I resonate with your relief that hopefully you will not linger too long in pain. I hope that your daughter can get here and that you two can have precious time together. May you be at peace.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2021
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    ooh. I popped off my last post in a bit of a hurry. I want to make something clear and that is that is that maybe I spoke too fast about Ibrance being a mistake. It does seem to’ve been for me but I don’t want to drive anyone away from taking a med that may help them. I don’t even know for sure that it’s what made me worse because I was also going thru immense stress trying to get my insurance lined up, plus “getting my affairs in order,” and let me tell you they never really have been totally in order so much of that stress was self induced.

    Also I want to tell you all that as much as I’ve needed and enjoyed the support I’ve received (thank you again!), It was never meant to be the purpose of this thread and those who are looking for information may come up short.

    So, that said, I went on the Ibrance website and also talked to some pharmacists who are trained on this drug. According to their own research, 55% of those tested with Ibrance and letrozole had tumor regression, while 44% of those tested with letrozole and a placebo also had tumor regression. Also, they determined that patients lived an average of over two years with the real thing. But what’s interesting to me is that so many people experienced a beneficial placebo effect. One theory I have is that cancer is a highly suggestible disease and no I don’t mean it’s all in our head. What I do mean is that there are things we can do to help ourselves believe we’re going to beat this and as dire as my dx is, I’m not thinking of this as a done deal. However the medical paradigm is so stressful that I think I’m better off avoiding it. It’s best to watch and learn and don’t take the word of the dr on everything. You know your body and situation.

    And to update on a recent experience. I drove to the 45 min drive to the dr office yesterday to get that document so we can start flying my daughter home from Chile. They said no, come back tomorrow. I explained that it’s a 45 min drive and that I need this STAT because the Chilean govt often turns it down the 1st, 2nd, and 3rd request. They didn’t care and I drove over this morning and almost missed it because they don’t post the hours online anywhere and they were closing at noon. I got it, at the very last second, but I am so angry with this doctor and felt like I was being blown off...a dying patient blown off by her cancer doc! 🤯 the stress is horrible and cancer alone is stressful enough.

  • moth
    moth Member Posts: 3,293
    edited September 2021
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    true about the confirmed objective rsponse rate in PALOMA-2 (the basis of which ibrance was approved) did show 55.3 v 44.4 in letrozole + placebo in the subgroup with measurable RECIST tumors. to me that just means a sigificant portion of hormone receptive cancers do respond to blockade - for a time.

    but the study's primary endpoint was pfs & that was 24.8 months for ibrance v 14.5 months

    for anyone interested in paloma-2 https://www.nejm.org/doi/full/10.1056/NEJMoa160730...


  • tb90
    tb90 Member Posts: 281
    edited September 2021
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    Piper: I am not around much so sorry to just drop in whenever. Being blown off by your doctor is the greatest injustice and inhumane act for a patient with terminal cancer. It is beyond belief and I cannot stand that it happened. Not being able to be there in person to advocate for the ones we meet here is so frustrating. So much I could do in person. But I can only offer words. I hope your daughter gets to you soon. Call ahead to the office and demand. Scream and yell if you have the energy. You do not seem like a screamer or yeller as you are so calm and rational, but now might be the time to practise. My heart is with you.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited September 2021
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    Thinking of you with great respect. Be comfortable my friend

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2021
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    exbrnxgrl, I'm lying on my bed, propped up with all my favorite pillows and no pain today, so I'm following your orders lol.

    TB90, you're right about me...I'm not a screamer and one of the things I hate most in life is being forced to be rude. However I was not rude after all but assertive. I drove over and got it yesterday and sent it to my daughter and now the next hurdle is the Chilean govt so we shall see. It took all I had yesterday and then I came home and fell in bed until morning. But, it's got me thinking. This is par for the course with the healthcare industry and me. It always happens this way...for me. No surprise but I was ready to blow a gasket on Thursday when they sent me home without that note. How can that be good for me? But I see it as proof that the doctor is no longer interested in the outcome. I will be leaving him a review and I will tell my story.

    And thank you for validating my suspicions that this is not right...I was decent to them even though I was very upset, because I’ve been around long enough to know that if you push too hard, you’re less likely to get what you want, but when I went in yesterday, the receptionist, who has always been very friendly, was not. And that told me that they’d been discussing it and they all felt I was being unreasonable. !!!

  • new2bc
    new2bc Member Posts: 252
    edited September 2021
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    Hi pipers,

    I am happy that you do not have any pain today and the process of getting that letter from the doctor is done. I hope your daughter comes to see you soon. Yesterday I started reading your original posts from 2016 about your divorce and the emotional journey because of it. It looks like stress is involved with most breast cancers and I was personally one of examples. I also read about your sister that was not feeling good. Is she ok now and can she stay with you until your daughter gets home? I wish you have more peaceful and pain free time ahead surrounded by your family.

  • gemini4
    gemini4 Member Posts: 320
    edited October 2021
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    Dear Pipers, I haven't posted to BCO forums for nearly four years now, and it's been quite a while since I even visited. Something made me want to log on specifically to see how you're doing. I caught up on your story, and I send lots of love to you. Take good care.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited October 2021
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    new2bc, I agree 100% that stress is a killer but more than that is how we deal with it. Despite learning new strategies, I’m not good at it but I would encourage anyone to learn stress reduction techniques. And yet I wonder if stress isn’t an addiction sometimes because I often didn’t do the things that would help me

    Gemini, I am extremely honored that you wanted to read my thread as I hoped on posting it that it would be of value in evaluating options and making difficult choices. I hope it helped you and others reading as well.

    Update on situation...my daughter is here and we are making up for lost time. My other daughter is here for a long weekend and my ex and his husband have been helping out a lot and I’ve realized how blessed and loved I really am after all. I’m on hospice now and at peace with that. I feel like I was given enough extra time to do mostly the things I wanted and needed to do and that’s gold

  • tb90
    tb90 Member Posts: 281
    edited October 2021
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    Piper, I am thrilled to hear this update. So glad your family is all together with you. Of course you are loved, even people here on BCO who have never met you, love you. Enjoy this time. Make this time special for all of you. And have peace and pain free days. Sending love your way.

  • cowgirl13
    cowgirl13 Member Posts: 777
    edited October 2021
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    Piper, I'm so happy to hear that everyone is there with you. You are a very special person. Lots of love to you.

  • chicagoan
    chicagoan Member Posts: 976
    edited October 2021
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    Piper-Thanks for your update. You've been in my thoughts. So glad you are feeling blessed and love-there is no better way to leave this life. Enjoy your time with your familiy.

  • new2bc
    new2bc Member Posts: 252
    edited October 2021
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    Hi Piper,

    I am so happy that you are in a comfortable place close to your daughters and even your ex. That means that all the anger and resentment are gone towards them. You need peace and joy at this time which will allow closure. Please enjoy everyday the best you can. We all love you here in BCO. Please keep us updated.

  • cowgirl13
    cowgirl13 Member Posts: 777
    edited November 2021
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    Piper, thinking of you and wishing you peace and serenity. Lots of love.

  • new2bc
    new2bc Member Posts: 252
    edited November 2021
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    Hi Piper,

    I hope you enjoyed spending time with your family during Thanksgiving. We are thinking of you and at the same time worried about you. Please update this post. We wish you peace and send you lots of love.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited December 2021
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    Hi all, I am still here but find myself confused when I want to sign in sometimes. The doc said I will get brain farts due to free floating calcium in my brain but I’ve never been good with computers and passwords anyway. There has been some pretty rough pain these past few days but not nearly as much as I anticipated. Of course we all have different experiences but mets to bones is not necessarily accompanied by terrible pain and so far it’s been bearable and steroids and morphine help a lot. Even though I haven’t been replying to your notes of support, I’ve been soaking up your good thoughts and it is such a help to me to be lifted up in this way and I really appreciate all of you.

    One thing I’d like to say though is that I have no regrets about my treatment choices and I actually feel like it was part of my life mission to do this. I know that I put my family through a lot but they supported me when they don’t believe what I believe and that’s phenomenal in today’s world.

    Another thing is that eight years ago when this whole thing started, I identified as a Christian and still do but have widened my scope to being more spiritual I think, even to the point of helping my daughters roll their eyeballs round and round sometimes but these things make more sense to me now. I took the time to go out into the world and do what I’ve always dreamed of…..the bucket list, and that made all the difference. I wanted a partner, a husband, a fulfilling relationship, and didn’t find that and it’s the least of my regrets right now. Life is love, whether you feel it or not and our job is to tap into that love. Live fearlessly because fear will destroy your happiness and also because I believe we all kind of know what’s going to happen to us before it actually does. How many of us here were actually surprised by our cancer dx? How many of us are afraid of dying? Well stop that because if you don’t fight it (past the point of no return I mean) then it can be quite a lovely experience. You know when it’s time to go and you can still keep yourself open to the possibility of a miracle, a next chance. After all, the universe is always reconfiguring. How’s that for your eyeball roll for the day? 😝

    But honestly, I know that the chance of spontaneous remission is low but the potential is there and I know people it’s happened to so I think it’s a good idea to keep the possibility in mind. You never know.

  • elainetherese
    elainetherese Member Posts: 1,628
    edited December 2021
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    pipers_dream,

    I'm glad to hear that you have no regrets and are at peace with yourself. I'm also happy to hear that you have some help for your pain. Hoping you continue to enjoy your time with family and friends, and thanks for sharing your wisdom with us. ((Hugs))

  • chicagoan
    chicagoan Member Posts: 976
    edited December 2021
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    So good to hear from you Piper. Thank you for sharing the wisdom you are gleaning from this experience.

    Surrounding you with love and peace.

  • new2bc
    new2bc Member Posts: 252
    edited December 2021
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    Thanks Piper for updating this post. I am glad your pain is under control and you are comfortable with any outcome that this world offers you. Fear is a terrible thing that will leave you exhausted both mentally and physically. You have been an inspiration to all of us. Please Keep in touch...

  • tess111
    tess111 Member Posts: 35
    edited December 2021
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    Piper, I wanted to thank you for sharing your journey with us. Your honesty and self reflection have been such a gift. I admire your decision to find your own pathway on this journey, yet never showing anything less than respect for those who chose a different path. That is a rare trait to be found in this day and age. I am sending you gentle hugs and a fervent wish that the rest of your journey is filled with love and peace. Keeping you in my thoughts.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited December 2021
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    Piper,

    Tess111's words express my feelings to a T! Much love to you.

  • cowgirl13
    cowgirl13 Member Posts: 777
    edited December 2021
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    Tess, you said it beautifully and it expresses just how I feel.

    Much love to you, Piper.

  • jelson
    jelson Member Posts: 622
    edited December 2021
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    Dear Piper -

    I picture you on a mountain top twirling around, arms out embracing the world, head back, face to the sun - singing out your joy to life - (I guess like Julie Andrews in Sound of Music except instead of an apron, a flowy, gauzy dress). Thank you for all you have shared, your openness, your insights, your honesty, your courage - your goodness. As said before, it is a comfort to be reminded that people like you exist. Whatever happens in your future, know that you have touched many people with your beautiful and generous spirit.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited January 2022
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    Hi piper,

    Just checking in to see how the new year is treating you.

    Fondly, Caryn