However I’m just wondering if anyone has anecdotal opinions on this, since according to the article and what I’ve always been told via my Oncologists, a) MBC is technically incurable without medication / medical intervention and b) cancer is tricky and it will eventually find a way to get through and/ or spread at some point, which is why the doctors seem to have an inexhaustible supply of different medication combinations. This to me is both relieving and disheartening.
On the one hand I’m definitely grateful to have had the medical interventions that absolutely saved my life when I was dying. But on the other hand I come from a school of thought that your body is meant to heal itself, if you can remove the things that may be repeatedly harming it or making it weaker, give it the right nutrition and support, and eventually get out of the way so it can do its job and heal.
I’m too scared to even think about going off medications anytime soon for obvious reasons, but I have seen people heal the worst conditions naturally so I know it happens…
I still believe that whole body holistic care can assist the body very well, and although I’m not a medical doctor I have always held onto the hope that there would come a time when my body would be ok enough to in fact take over and work to heal itself…my Oncologists say absolutely not, and that no underlying holistic modality you could do would ever fully heal your body. Only allopathic medicine can help you.
It’s a really charged topic especially in my family because understandably, they’ve seen me almost lose my life. They want no part of me ever considering going off medications as long as I’m here and functioning again. But I can’t help that this is how I see things. And it’s really tough when I’ve never taken so much as an aspirin, to come to terms with an idea that I’ll be on strong medications that have side effects like they have, for life.
Anyone have thoughts or input on this? I want to be really clear that this is not an attack on western medicine, or a “this vs that” idea as to which one is superior. I just honestly want to know if anyone else has thought about this, since we’re all in a similar predicament.
Thanks~
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Not completely on topic but I spend a lot of time thinking about the balance between living longer and being “disabled” by the side effects of my treatment. I watched my sister fight this disease for six years and she was I. Her 40s and had sons to raise - she would tell you to take every option and keep fighting no matter what. I want to be active (I’m 57) and live my life without becoming a burden and being unable to walk etc. I often begged her to stop treatment because it made her such a mess. I suspect I will stop treatment early because of this experience. I felt pretty good before diagnosis and it’s hard to understand which aches and pains are cancer and which are from meds.
Sorry to ramble but this sparked something that’s been on my mind.
So agree! It’s those little aches that you used to brush off! They now trigger worries and concern where you once knew that just a good night’s sleep and a couple of Tylenol would have you up and running the next morning. 🥴
I agree. When the effects of treatment and/or cancer give me unacceptable quality of life, I will stop the treatment. I dont want to exist. I want to live
I agree with your thoughts. Last night I found this website which could be helpful to you: bcct.ngo/I am searching for answers myself. I am concerned that these conventional treatments if taken too long will only leave me with them as an option. The aboe website has ways to work through your values to make decisions. The first time I fought through conventional treatment, I was given the option to add other wholistic practices which helped me with the side effects. It was acupuncture, oncology ND, PT, DC, massage therapy, and OT. This time I do not have all of these options of support and find it difficult to handle the side effects. Now I am searching for a ND to add to my health team. I wish you the best on your journey.
Thanks for this, and the website. I haven’t seen it before and it looks interesting. Searching for an ND seems like a solid idea, and something I might consider down the line as well. It’s hard to navigate a lot of this stuff on our own without someone or a few people to help figure out what adjuncts are complimentary to what, and which inputs could be helpful vs those that could aggravate our condition. Wish you all the success in your search for additional support as well~
Thank you for this I am struggling with telling my family “no” when I want to stop taking treatment that causes so many problems. My sister was unable to walk from neuropathy, almost bling from brain radiation, and crazy from the combo of steroids and 6 years of chemo. I refuse to accept that toxic meds are the only answer.
I totally get where you’re coming from. Our families are such a huge part of this, and no one wants to feel ostracized from the people that are usually our biggest support system. I find it really hard to be honest with (some of) them about how I feel about these treatments sometimes.
Even when I was in the hospital without much more than a prayer that I was going to actually be ok, I was very clear that I wasn’t going to ever take chemo or radiation. It was and is still just my preference. My oncologist knows I’ll never do it, I told him I’d rather die which sounds ridiculous but it’s how I feel. So they stopped asking me to do it.
I watched my mom get really sick from having both chemo and radiation (granted this was decades ago) but I always swore that under no circumstances would I ever do either, so I ended up with the targeted therapy and lots of medications. They do work, but sometimes I look at what they’re also doing to me physically and emotionally and I struggle with it.
It can make you feel really desperate at times, as I’m sure you know. I’m also pretty defiant by nature, so for someone like me to be ok with all these restrictions in travel, finances (early menopause!) and feeling like I lost almost all sense of personal freedom I really cherish, there are times I just want to check out. And then I snap back and am reminded how far I’ve come and am grateful for my life again. (Repeat cycle).
I can relate to some of what you're saying, e.g. I have *often* been described as defiant, mostly by bosses ! But I do encourage you to keep an open mind about the chemo and rads. From what I understand, these treatments were much more brutal back in the day...Many here note that some of the chemo, e.g. taxol, is *easier* on them than the oral meds...
After my initial dx, 11 years ago, I did 6 months of chemo (ACT, which includes in the infamous "red devil") and then 42 rounds of rads. It was not nearly as bad as I had feared. And I think I was at peak defiance during that period, determined to not change one thing in my life, still worked like a feind, managed family responsibilities, etc. It was exhausting, but like running a marathon and sheer force of will propels you. *But* I was trying to cure my cancer, which would not be the case with metastatic disease. Would I do it again to get six or twelve more months of life? Yes, based on my first-hand experience.
I too will not rule out chemo….I’ve been on it three times…the first time I was able to work full time throughout (though it wasn’t easy), and the second and third times I was able to live a pretty active retired person’s life during treatment…and I know they prolonged my life! I’m now on my fourth kind, and hoping that it will be as helpful as the others….and hopefully last longer!
I am having a slightly harder time with this one: It has moved into my lungs with a vengeance and I’m now on 4L O2 all day….and have had 4 thoracentesis…..I think it just got away from us when the Xeloda suddenly stopped working. But I’m taking Navilbine and hoping that will return me to something like normal again. I haven’t heard of anyone else on this site having similar lung problems….it’s hard….I used to run half marathons! Very humbling.
totally understandable, and sorry to hear you’re having to go through all of that right now…I don’t know a lot about the lung issues either, I’m hoping someone shares some good information on the boards that will be useful, and that what they’re giving you will have very successful outcomes. It always helps to know we’re not the only ones going through it! There was a time last year when I was absolutely certain there was no way out of this, that not only would I be physically compromised for life but I wouldn’t even make it past another month, and I surpassed that one year later. It is humbling (as of right now I can’t do my favorite exercise either) and not sure if I’ll ever be able to do it again, so I put it off “for now” in the hopes that it I’ll change. As you know, you have the support of the women here so I hope you’re getting that - all my good thoughts to you 💜
Oh gosh, I couldn’t agree with you more! Surely there are natural mechanisms that can be activated to keep the cancer cells in their place. Everyone has cancer cells but only some of us have body environments that allow them to grow out of control. Fix the environment and you can step back into the population demographic that we call cancer free. Thank you so much for verbalizing this. Hoping this thread becomes a resource for natural options that actually work. I do believe, tho, that finding out what is out of wack in our own bodies is the key so I, too, have been looking into a ND to help me navigate this second phase of the disease. There don’t seem to be a lot of them in my area. If anyone is in the Raleigh/Durham area and has a reputable ND who has knowledge about MBC, please let me know. I love my oncologist but I want more than just drugs and what I can find out on my own.
Thanks again for starting this thread. It is a vital one. Best wishes to you on your healing journey.
Thanks for saying that; I was initially hesitant to post a thread like this because I don’t want to disrespect the great results so many of us get. But my truth is my truth and I’ve always been a pretty solid (and maybe also stubborn) supporter of “first, do no harm”. I have a lot of friends who champion a natural way of life and some are educators in the field, but the harsh truth for me was that when I got very sick, neither they nor me really knew the “best” route to take if I were to go fully natural. There was mountains of info and resources and paths to go, both holistic and integrative, but without solid guidance of a doctor or team that one trusts, it can be terrifying and paralyzing to make choices sometimes.
It is terrifying. And from what I understand, every individual has unique variables so what works for one may not work for another, making this a somewhat lonely journey to navigate. For that reason I am so grateful to this community, which gives support, resources, love, and often laughter. I’ve acquired lots of valuable info and perspective from the short week and a half since I discovered this site. It is amazing, but I do have to admit I have gone down several rabbit holes since then, too. I think my screen time is up 1000%. 🤣🤣🤣
It is daunting sometimes to decide what treatment options to take. Couldn't agree more, confidence in the care team is so very important. Best wishes on your journey.
I totally hear you. There’s a mixed bag of gratitude and despair. Until that magic bullet is discovered that will undoubtedly kill all types of cancer, it becomes a sad but grateful waiting game. 🥴
I haven’t looked at the article yet but I really appreciate your post. Everything that you say resonates with me very deeply. Last night I had the thought that in order for complete and total healing to occur I need to have some kind of change of consciousness. I jokingly told my partner that maybe I need to go on a vision quest with a gallon of water & a blanket. I feel so strongly that the mind-body connection is so very important. Meanwhile, I will follow the advice of my doctors, one of whom is a naturopath and has put me on great supplements to help my body heal and endure the treatments.
Best of luck to you and know that you are certainly not alone in your feelings about what’s going on with this supposedly incurable disease. My personal opinion is that it is possible to keep the cancer in a dormant stage but it will take a lot of hard work.
well said! I’m really happy to know I’m not alone in this, and that there are others who also think and feel the same. I can relate to the joking about the vision quest thing, I’m always looking for addl ideas, and they can come across as insane sometimes!
Dear UzzyZorro many of the cases studied in Radical Remission included the person following their intuition and going on some kind of vision quest that was relevant to their life and background. Please trust your intuition.
Very early on, about six months after diagnosis of denovo MBC with bone mets, I was at a bc weekend retreat and heard a cancer CD by a psychologist named Belleruth Naparstek. She has studied the "mind-body" connection extensively and has recorded a number of very relaxing pieces about a number of conditions, including cancer. It's available in a variety of forms now at healthjourneys.com. Her voice is incredibly relaxing! I also bought the "surgery" CD and listened to it about 3 or 4 times before a surgical procedure and afterwards the surgeon told me that I was the most relaxed patient he ever operated on. Personally, I'm not big on alternative and complimentary medicine, especially things without research to back it up, but I think doing what we can to maintain a "healthy lifestyle" probably helps our quality of life. I've been doing conventional treatment since 2004 when I was diagnosed, am still here, and expect to change meds when I see my onc this week. Probably Tamoxifen maybe plus Piqray, and Zometa for the bone mets. Only non bone met I've had so far had been in my left ureter. Have felt the worst the last year or so--pandemic not helping! PT has been helpful to me, also pulmonary therapy (alot like PT).
Great story re: the surgery CD, I’m always interested in the body/mind connection and how they intersect. Sorry you haven’t had the best year, and I agree this pandemic has thrown a chink in a lot of lives. I haven’t heard of her, but am adding it to a list of things to look up. Thanks for your inputs!
Hi Verbena1 -
What an interesting post and dialogue!
I read it earlier and the question about meds vs. the body's natural healing has been rolling around in my mind...A few thoughts.
I do agree with others who pointed out that everyone's body responds differently and has a different response to the cancer *and* the treatment. I suppose this is obvious - I mean, look at the disparity in how people fare - but I keep it in my mind to try to figure out *my* body and cancer and ponder others'.
My doc said to me early on something about "seed (the cancer) and soil (the body)"...and we find out along the way how fierce the seed is and how well our bodies defend themselves (aided by the meds, persumably).
I would guess that the majority of folks would succumb pretty quickly without the meds. But at what cost? And then again, some people succumb pretty quickly *in spite of* the meds...sadly.
But *some* people do well without meds.
I imagine that some people with metastatic cancer know they have it only because they did scans...Presumably they went on treatment, but I'm sure some would have gone years without even knowing in the absence of scan technology. So some of them are sprinkled among us...I assume some of the NED ladies or similar are in this category?
**Also, I often bring up my sister as an example...metastatic TNBC, hasn't taken any meds in over six years, currently NED. Twice mets cropped up in her lungs and she had them surgically removed. Even then, they were very slow growing, e.g. waited 6+ months each time after seeing on scans for them to be big enough to bother with the surgery....
I don't see an ND (but after reading comments, will consider it...) but, like many of us, I try all sorts of things to see what make my body/environment *less friendly* to the cancer. While I try to discern what's making a difference based on subsequent tumor markers, scans, etc., I'm really just guessing....I do wish there were some large studies to help us figure this out.
I have considered going off meds for a while to see what happens. I read here that sometimes folks take some sort of break between treatments to flush out their systems or similar. I imagine a scenario where I possibly extend that break, if markers look good, to see how long I can go without progression. But I am not willing to take big risks...
But I have *no* doubt that there are things we can do to fend off the cancer in addition to and maybe even in lieu of the meds.
Absolutely. Have you read "Radical remissions"? It's a great read about rare instances of complete remission. We also think the same although Susie has not started medication yet, we must soon. Check out Dr Christina Sanchez at Madrid university. High THC oil (check out Rick Simpson). Good luck, keep believing. XX ❤️
Thank you Winner123 for mentioningRadical Remission. I am reading it for the third time and talking through each chapter with a friend of mine who has survived a different kinds of cancer. It is very empowering.
27 years ago after breast cancer surgery I had 6 months of chemo, 3 months of radiotherapy and 10 years of tamoxifen. All had their effects but it gave me all those years before MBC appeared, for which I am grateful. I felt very poorly before my recent diagnosis and much better once I was prescribed letrozole and ibrance. Until recently when I had low neutrophils I'd been fine. I've tried to focus on diet and lifestyle issues, but I think it's bigger than that. We live where we do in a set of circumstances, and unless the whole of society changes, its difficult to remove the many factors that contribute to conditions such as cancer. I guess everyone's journey is individual , so individual choices. At the moment I'm very grateful for the medication I'm receiving, and will do my best to compliment that in the way that I live. X
I agree, there’s a bigger picture in the midst of all of it, and we’ve only scratched the surface in terms of all the contributing factors. Thanks for your input!
Hi Beryl: Thanks for putting into words, exactly what I was thinking. There are many factors that play into our health (not the least of which is enviromental) and how we are affected by disease.
Dear Verbena1, I agree with Winner123 who recommends reading the book Radical Remission by Kelly Turner, Phd. It is evidence that there are many people who have had remarkable recovery from cancer, and she describes her research on great detail. Having interviewed over 1000 people who have healed, she presents 9 factors that all the cases have in common. I don't think it's an either /or choice between modalities (mainstream vs alternative) but rather taking control of your own personal pathway and being empowered.I am doing my best to practice the 9 factors in ways unique to me. I urge everyone here to do the same for themselves. Read the book - - it's game-changing.
I’m ordering it now, thanks - this has been a really great thread and I’m grateful for all the ladies who have shared their experiences and expertise. And very true, it’s not “this vs that” but what works for each of us on our individual paths.
I look forward to your reflections if you'd like to share them as you read the book. I would also be happy to share mine. Thank you for posting the thread x
Dear Verbena1, I read your post with great interest, since I too feel confused by the mere existence of cancer in my healthy body. I too did not take as much as aspirin, and believed that between my healthy body and happy personality - I am protected. So I hear you. However;Breast cancer is not a lifestyle disease. It is a tricky disease that many smart, experienced and ambitious people are trying to understand it's mechanism. We are lucky. My sister died 30 years ago because there was no availability, like we have today, of targeted treatments. We are lucky because during the last 15-20 years, the "jump" in technology, together with cracking the human gene, has been gigantic. So MBC is slowly being cracked too, and hopefully, soon enough, a medication or treatment that solves/maintain this terrible disease will become available . Until then, if the body could heal itself, people like you and me wouldn't get sick to begin with, right?
As for keeping your body healthy: there is no contradiction between taking care of yourself and taking your medication. Mind over body is powerful. I try to live my life, between treatments, as normal as normal can be. I do know though, that my life depends on the efficacy of medication. Please do not regard medication as an evil factor; longevity in developed countries is higher then in China, for example, where prevention is key. Japan - they found the silver lining by combining preventive medicine with modern medicine.
In short: healthy living, good nutrition and exercise will help you fight the disease and heal some of the damage the medication does to your body, mostly by keeping your liver healthy. However, only meds can stop the spread of the disease.
There are many breakthrough in the field of MBC; we just need to be patient and hopeful that we will live long enough to "enjoy" them.
That was really well said, appreciate your thoughts on this…and sorry to hear about your sister; you are right in that we’re fortunate to have options our loved ones didn’t all have.
I often say that I got myself into this mess via my lifestyle choices. My family gets frustrated when I say it, and although it’s certainly not “my fault” or something I or any of us deserved, I do believe that at least in part, speaking for me, if I had made different choices across the board from the start (dietary, for one) I may not be in this situation, although there’s really no proving it.
Not only that there's no proof that life choices would have made a difference, you are insinuating that someone knows what causes MBC, which is not the case, otherwise, we would have all been directed as to what not to do.Please stop beating yourself , focus instead on enjoying the moment and getting stronger for a brighter future. You need every bit of energy 🙂
Dear Verbena1 and EZSZ I think there are deeper aspects that one can work on, in addition to nutrition, exercise and lifestyle. For me, there is embedded trauma from my own life, and that of my ancestors, and also my children who have unfortunately experienced trauma that I was unable to protect them from. Part of my pathway is to let go of and seek healing for that trauma. Then there is the spiritual aspect - - according to Kelly Turner's extensive research, one factor in common for people who heal is also spiritual practice of one kind or another. So these are avenues I am also exploring on my journey.
I agree, there are so many components that can be added to the full spectrum of health modalities if we choose to. I have heard a fair amount of people over the years talk about the healing power of clearing family lineage and emotional stuff, forgiveness, etc. I’m happy to hear when someone like yourself is brave enough to delve into all of this stuff, I know it’s not always easy to do!
Indeed. A very dear friend of mine has made it a great deal easier for me to do. She put old family letters into chronological order for me, and I'm finally rereading them after nearly 50 yearsAlso, she carried out genealogical research for me on both sides of my heritage which had also been both enlightening and 'lightening' of the load of ancestral trauma.
I would dare say most of us have asked ourselves this question. I don't think the systems can heal itself because of all the external problems. And I have also been told that once Cancer is in your blood stream, (moved from one part of the body to another) it can regenerate itself at anytime. Makes it so difficult to target.
I believe as you do that a whole body holistic approach can help to heal our bodies. I have been watching an excellent series the past few days called Becoming Cancer Free. There are 9 modules that include interviews with various doctors as well as people who have healed themselves from cancer using holistic approaches, even Stage IV cancers. Each module focuses on a different modality, like nutrition, exercise, meditation practices, clearing out toxins in your home, etc. I have been learning so much about things I can do to heal along with taking the medications I have been prescribed. I have also bought a book called Beating Cancer with Nutrition which focuses on anti-inflammatory foods and a more plant-based diet. I don't know if doing all of these things will bring about a cure, but I do know that since I have changed some things I have been feeling good and have more energy and strength. I think future medical treatments will include more natural things as well as medications to create the best possible environment for our bodies. Best wishes to you.
I admit to being a Western medicine fan. I'll start there. With that said, early on in this journey I read something that profoundly affected how I see this disease. What I acknowledge is that cancer is not a foreign thing introduced to our bodies, it's created by our bodies. Therefore, targeting cancer can be targeting ourselves. To me, that's what makes this disease so terribly hard to treat, much less cure. Modern science has done a lot and I'm very grateful for it. We all need to decide for ourselves what we want to do about cancer and what we're willing to withstand. Everybody around us needs to accept that -- even though it can be hard.
Honestly oncologist are legally not allowed to prescribe or condone anything that is not SOC (Standard of Care). Unfortunately SOC has not been revamped for many years. Fortunately there is so much we can do for ourselves. In my opinion diet is the most important. I recently went on a vegan diet. No meat, no diary, no eggs and especially no sugar. Cancer feeds on sugar. The diet is easier than I ever imagined. There are so many awesome recipes online. And so many plant based foods in most grocery stores. You can start by adding more vegetables and smaller portions of antibiotic free meats. And substituting for more of the whole food plant based items in local supermarkets. Great info on the following documentary’s: WHAT THE HEALTH on Netflix, KNIVES OVER FORKS, GAME CHANGES, FAT, SICK and ALMOST DEAD.Read Jane Mclelland HOW TO STARVE CANCER
Read Joe Tippens blog, MY CANCER STORY ROCKS. You’ll find a protocol that is being done in addition to what is prescribed by your oncologist to fight cancer from all pathways. I am not a Dr but are just offering info that has helped me and hundreds of others who were told you’re incurable. Get your affairs in order and after doing the Joe Tippens protocol have shown up NED (No Evidence of Disease) From what I’ve read cancer is a metabolic disease and is treated as a genetic disease with chemo and radiation. Joe Tippens protocol treats cancer as a metabolic disease. Only 1 or 2% of cancer is genetic. So it is important to treat cancer from other pathways.
Positive attitude, exercise and diet are extremely important. If you can’t get to an exercise class you can find all kinds of classes on YouTube.
The support and prayers we offer each other is so wonderful and so important. Blessings to you. Sending love and prayers.
Thanks for all the great info! I’ve watched those docs and I do agree on the attitude and diet being super important, for me sugar is tops on the list of aggravators as well…over the years I have been veg, vegan and raw vegan but ultimately found that longer term, I feel best when I do include clean sources of fish and / or meat in my diet.
Joe Tippens protocol I wish I had stuck with, it was actually suggested to me back in 2019 by my integrated doctor but I ultimately went off the fenbendazole after a month and tried something else. I have considered going back on it alongside the current meds I’m on, but I’m scared to even mention it to the oncologists, I feel like every month I’m asking them about another supplement or natural add on! Im going to go back and look at it again, much appreciated, this was very helpful and blessings back to you~
I agree with you about diet. I have read about and listened to many articles about a total plant based diet, but I feel like we need some animal protein as well in limited amounts and making sure they are clean sources. I, too, am always asking my doctor, nurse practitioner and nutritionist about supplements or add ons that I read about. My doctor and her nurse almost never recommend them, but my nutritionist will do a little research on what I am asking about and give me her input, not just say no to me. I feel we have to be our own advocates and change things that we have control over. Neither one of my oncologists ever suggested diet changes or exercise or getting rid of toxins, etc. as that is not what their training is. I heard that oncologists only have about 4 hours of nutrition information in their years of medical school!
I am the founder/president of all-volunteer Annie Appleseed Project. We strongly support the idea of lifestyle changes, complementary therapies and holistic treatments. Doing a combination of these is what works best. We study the evidence and I post almost daily on our Face book page. Here is the URL for our Evidence-based Handout on Reducing Treatment Toxicities. Too much pain and suffering for conventional meds alone. Docs need to know, but many still work with limited vision. annieappleseedproject.org/w...
I think , Olivia Newton John and Susan Sommers, have done holistic healing I think but not positive or all natural things to heal, myself I were oils be terrified to be brave enough to try this, but I can surely understand your feelings about this, I’m sure your family is worried because they watched you almost loose your life and life is so very precious, I wish you all the luck , my prayers are with you !
This is the most informative, understanding, open-minded, and bonding thread I’ve ever read. Just wow. Thanks to all of you sisters. I wish I could give you all big hugs in person!
Hi thank you for posting this. I’ve seen this article in a number of platforms and to be honest am not overly excited. We’re a long long way from this drug being made available as it’s not even gone to drug trials. Im very fortunate to be responding very well to ibrance and letrozole for bone mets. I really believe that these drugs are helping me remain stable but I also take a lot of supplements and try to eat healthily and exercise to manage the side effects of the drugs and to augment the conventional meds. I also have a very good mindset (with the occasional wobble at 4am) and don’t dwell on cancer and don’t overanalyse the why’s and how’s of it all. But I also do loads of research to be as well informed as possible. I also forgive myself if I eat a cake or enjoy a glass of wine. I’m generally very well and the drugs side effects are minimal. I just get on with living my life and it seems to work for me.
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! But I do encourage you to keep an open mind about the chemo and rads. From what I understand, these treatments were much more brutal back in the day...Many here note that some of the chemo, e.g. taxol, is *easier* on them than the oral meds...
Sugar and cancer 
I take letrozole and Ibrance together 
Breast Cancer on Brain.
hope + action
Feeling scared 
