Sep 10, 2021 03:37PM Trishyla wrote:
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.
This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.
Posted on: Dec 13, 2016 06:08PM
I've had several people PM and want to know what I did for treatment and I've been bad about answering them but time has been in short supply so I just thought I'd put this up here. I am not calling myself a success story and in no way would my path be for everyone but some are wondering what I've done and what I'm willing to live with. Turns out I'm really comfortable with uncertainty, which I suppose is a strength and certainly one I never realized I had. Slowly in my life my personality has revealed itself little by little and I still surprise myself.
I got dx'ed mid-November 3 years ago and it was completely overwhelming to me. My husband had left me a few years before this after a very long marriage, I was a very new empty nester, and I had started not just a new job, but a new career as a special ed teacher, under very trying circumstances and after having to move to take the position. The lump was not a lump--it was a subtle rippling under the skin of my left breast and I saw it in the mirror one morning. I'm normally a procrastinator but I got right in and got it checked and it was certainly BC.
They started right away making mistakes with my tests and such. I had to miss an important scan b/c they failed to schedule it in line with when my period was due. One male doc told me lumpectomy but the more competent woman surgeon in St. Louis marched in and said grandly, "Off with the boobs!" Well she said something like that. I went ahead and scheduled it for January of 2014, but the more I thought about chemo and radiation, the more reluctant I felt and of course I was googling like crazy and reading many books.
I wanted to do holistic but wasn't even sure where to start. Thought I'd start with detox but much of what I read said don't do it if you still have metal fillings so I made an appointment with a holistic doc in St. Louis, 2-½ hours from home. The appt was on Monday and the surgery was scheduled for Friday of the same week. The doc took a look at me and told me I didn't look too bad and suggested that if I were willing to postpone the surgery, he figured he could help me knock it down to a lumpectomy, or possibly no surgery at all. The idea of canceling a major surgery was really scary b/c what if they got mad and refused to treat me after that. I decided to go ahead and do it anyway and immediately felt like a huge weight was lifted off my soul--I was very peaceful about my decision. By this time I had been on the ketogenic diet for 2 weeks and the cancer seemed to have stopped growing. I had felt it grow before--now it had stopped and all it took was to get the sugars out. I might add that I'd had a terrible sugar addiction all my life so I wasn't terribly surprised by this.
At this point I'm going to stop and tell you all why my reluctance to do conventional care. The first and most obvious one was the fact that I've always been a wannabe hippie. I was 5 years too late for the real fun, so I thought, but had always fooled about with herbs and making my own salves and herb teas and such and I actually think this is fun. The other reason was darker--only a year before as I was going thru mom's stuff after she died, I found pix of her aunt who had died of BC. She had a rare reaction to the chemo they used and was burned from the inside out. The pictures were horrific and I remembered some of the things they used to whisper about the case when she was dying--I wouldn't wish such a fate on Hitler. I knew that I wasn't going to do that. Some have pointed out that cancer meds have changed a lot in the last 25 years but when the MO gave me a list of what he wanted to use, that one was on the list. I knew it was a rare side effect but we were related.So I will stop here and resume in another post b/c this one is getting really long. BRB.
Posts 151 - 180 (180 total)
Sep 10, 2021 03:37PM Trishyla wrote:
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.
Sep 17, 2021 10:42AM purple32 wrote:
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 ?>
Sep 17, 2021 10:56AM HersheyKiss wrote:
Laurie, Vitamin Shoppe carries lots of soy-free protein powders.
Sep 23, 2021 10:24AM pipers_dream wrote:
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.
Sep 23, 2021 01:50PM Trishyla wrote:
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.
Sep 23, 2021 01:55PM Chicagoan wrote:
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.
Sep 24, 2021 02:18PM pipers_dream wrote:
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.
Sep 24, 2021 04:42PM moth wrote:
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...
Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the OddsDx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
Sep 25, 2021 12:38AM TB90 wrote:
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.
Sep 25, 2021 02:30AM exbrnxgrl wrote:
Thinking of you with great respect. Be comfortable my friend
Sep 25, 2021 01:33PM - edited Sep 25, 2021 01:46PM by pipers_dream
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. !!!
Sep 26, 2021 12:10AM new2bc wrote:
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.
Oct 4, 2021 11:40PM gemini4 wrote:
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.
Oct 22, 2021 11:22PM pipers_dream wrote:
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
Oct 22, 2021 11:39PM TB90 wrote:
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.
Oct 23, 2021 02:57AM Cowgirl13 wrote:
Piper, I'm so happy to hear that everyone is there with you. You are a very special person. Lots of love to you.
Oct 23, 2021 08:21AM Chicagoan wrote:
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.
Oct 24, 2021 11:29PM new2bc wrote:
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.
Nov 4, 2021 01:52AM Cowgirl13 wrote:
Piper, thinking of you and wishing you peace and serenity. Lots of love.
Dec 3, 2021 01:32PM pipers_dream wrote:
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.
Dec 3, 2021 03:00PM ElaineTherese wrote:
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))
Dec 3, 2021 04:38PM Chicagoan wrote:
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.
Dec 3, 2021 05:33PM wrenn wrote:
What a different world it would be if more people were like you. Thank you for your posts over the years. I am an atheist with different views on treatment but respect and admire you so much. Take care
Dec 3, 2021 10:20PM new2bc wrote:
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...
Dec 4, 2021 07:06PM Tess111 wrote:
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.
Dec 4, 2021 08:28PM - edited Dec 4, 2021 08:34PM by exbrnxgrl
Tess111's words express my feelings to a T! Much love to you.
Dec 5, 2021 01:40AM - edited Dec 5, 2021 01:40AM by Cowgirl13
Tess, you said it beautifully and it expresses just how I feel.
Much love to you, Piper.
Dec 6, 2021 05:24AM Jelson wrote:
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.