TRIPLE POSITIVE GROUP
Comments
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Photogirl congrats on your anniversary and the great results you received so far! That is great news. Praying your mammogram results are equally fantastic 😊0
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Hapb I agree with your frustration about all the drugs being prescribed for us. It can't be good for our bodies. I am not opposed to taking them if there is no other solution, especially if quality of life is impacted. Like you, I want to rely on good nutrition, exercise and stress management to make my immune system as strong as possible. I agree with the philosophy to treat the cause, not the symptom. Drugs don't always do that. Take pain pills - they take the pain away but they don't cure the reason for the pain. I'm learning about different methods to alleviate pain at the source through eating certain foods, acupuncture, supplements, oils, etc. I'm not sure what or if any of these will work but I'm willing to invest the time to try.
Have you tried essential oils to alleviate anxiety or to improve mood? I'm not an expert but I've read that certain oils can help. It's important that our mind and bodies are at peace - my MO always told me stress of any kind is not good for cancer patients
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HapB - I am WAY post meno, plus have had a complete hysterectomy. Tamo was prescribed to me instead of AI due to previous osteoporosis dx. I took it for 3 years but am giving myself a 3 month break since Thanksgiving. Seeing a new onco tomorrow and will probably get spanked and put right back on it.
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Saying diet can cure cancer is a lie and getting people to believe that kills people who listen. Naturopathic cancer "doctors" are basically the definition of evil if they treat people while encouraging them to forgo actual medical treatment. Until 2 years ago, my state didn't even regulate people who called themselves such which meant that they needed no education to even practice. I'm not sure every state's regulations these days but I'd imagine there's other states where they're unlicensed. I'm not going to keep talking about this. I'll leave these links here:
The Hidden Cancer Cure https://sciencebasedmedicine.org/the-hidden-cancer-cure/
The Natural Cancer Cure Narrative https://sciencebasedmedicine.org/the-natural-cance...
Alternative Medicine Kills Cancer Patients https://sciencebasedmedicine.org/alternative-medic...
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Hapb - I think seeing a naturopathic doctor is a good idea. I saw one while I was in treatment. She put me on a regimen of supplements, suggested complimentary therapies, stress management, etc. It would be helpful to know which med is causing problems - I'm assuming a naturopathic would be able to provide advice. For example, my naturopath prescribed Boswilla supplements for pain so I could get away from taking so much Advil. Unfortunately the Boswilla gave me a headache so she switched me to Curcumin which did offer some relief.
I feel awful for all the struggles you are going through and really hope you find relief soon.
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hap - not sure you can state with authority that 100% of patients are harmed by using AI drugs. If I participated in the essential oil study I actually would be harmed as I am violently allergic to one of the ingredients used - I happen too know that because I have been tested, but others may not necessarily know they are allergic until they have had contact with the oils. All of these studies carry risk, even ones that seem harmless. I live in one of the states where naturopaths do not have to be an MD.
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Hap,
I take my AI (aromasin), and then three drugs related to taking the AI.
1. Because I was premenopausal in 2015, I get monthly Zoladex.
2. Because my AI made me depressed, I'm on Celexa.
3. Because my AI gave me osteoporosis, I'm getting Prolia, every six months. (Yay! No more Fosamax.)
I don't really mind. Not one of these additional drugs produces any side effects for me, and they make taking Aromasin possible. Hopefully, the Prolia will help restore my bone health, and I'll be able to ditch the Zoladex soon. It is what it is.
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Healthy diet and exercise are good things. They certainly help the body to be as strong and healthy as possible, and as with most things, cannot hurt in moderation. But they can neither prevent nor heal cancer on their own.
I live in the San Francisco Bay Area, where every other person is vegan, gluten/dairy/soy free, etc. and yet there is plenty of cancer here. One of my closest friends has been eating a plant based organic diet for years. She has her own chickens for eggs, grows most of her own vegetables and actually teaches a spinning class. She is the "healthiest" person I know, but she discovered colon cancer during her baseline colonoscopy at the age of 49. I walk daily, cook from scratch for virtually all our meals, do not eat fast or processed foods and what little meat we do buy is organic/grass fed. I had mammograms annually and still found breast cancer at my last one, which turned out to be more invasive and more widespread than any of my imaging initially showed.
We also have excellent doctors where I live, and I am fortunate to have good medical insurance. I will continue to eat well and exercise, but I will also take the medications I am prescribed.
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hap - Taxol is a plant based drug too, just sayin'... People can be very allergic to plants - I am allergic to many plants, and food that comes from plants. I had life-threatening allergic rhinitis induced asthma from the time I was in high school until my 30's, 10 years of allergy injections finally allowed me to control it. The testing that identified my sensitivities also revealed that I cannot have flu shots because of albumin allergy and could not have a tetanus injection when they were derived from horse serum, now they are formulated in other ways and I can receive them. A few years ago I had drug and cosmetic allergy testing done when I had a plaque-like rash that my derm originally thought was lupus. Turned out I was allergic to a wide variety of things, the lathering agent (natural coconut deriviative) in my shampoo, epoxy resin that made up the plastic in the frames of my glasses (natural pine tree sap), and a whole bunch of essential oils, among other things. There is some thought that a number of oils are estrogenic - tea tree and lavender have been looked at and the results are mixed. Some avoid them, others feel no need. I was osteopenic prior to diagnosis with breast cancer, and AI drugs worsened that situation - however, Prolia reversed it. I feel it is necessary to take an AI to help me avoid a recurrence and whatever I need to do to stay the course is ok with me. While it would be nice to have some estrogen, I was 96% ER+ and I am not willing to rely on diet or exercise to protect me, or control my levels. I just took a long enough break from letrozole to have sensitive estrogen testing done, and my number is too high for my comfort level so I will resume letrozole next week. That is my personal choice, might not be yours, or the choice that others make. We each need to do what we feel is right for ourselves as individuals, and it is important to recognize that our choices with regard to treatment, and complementary treatment, don't have to be universally accepted, but I concur with the ladies who posted above - there are too many fit vegans with breast cancer for me to assume that diet and exercise are enough.
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I went back on Arimidex in December after my neck lump scare. The joint pain has come back, but that is the worst thing for me. Well that and serious vaginal issues, but I have things to deal with that that help.
Special K-thanks for the radiation cream mix. That was the one. Poor baby is really suffering. A cream won't help now. He has a massive blister on his foot, that they finally drained, but called in a plastic surgeon to look at the best options. I guess it is basically like a bad second degree burn.
Thanks for everyone's kind thoughts. He was diagnosed last September. Odds aren't zero, but not 50% either for long term. He has 15 months of chemo pretty much round the clock and 6 weeks of radiation. He made it to 4. They had to stop the radiation to his foot for two weeks, but will continue with his knee area. When diagnosed, his tumor was growing in size hourly. They took him straight from an mri in Huntsville Alabama by ambulance to St. Jude's Hospital. A pet scan showed his marrow was 85% cancer. He had a couple fractured vertebrae no one knew about, a spot on his hip and a couple other places. The foot was the one that was visible and growing larger every hour. The doc said he probably just assumed it was normal to feel the way he did. He is a very bright, GIGANTIC, almost 4 year old, into science. So he is learning a lot. But it is a hard road ahead.
HapB-there are so many drugs with side effects that can cause harm, but I have decided that as much as I hate taking arimidex and my 8 month break was wonderful, that scare in December was enough to really put me back on the plan. And it is way better than the alternative. So onward and upward.
I do believe in healthy eating, exercise, as much organic as possible. But I cheat too.
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hap - I post here with an eye toward who might come along later and read what I wrote. Your post from earlier said " I believe 100% that diet and other alternative treatments will prevent recurrence, as a matter of fact, there are many studies that say that exercise shows a greater reduction in chance if recurrence than the treatments they offer can." That sounded to me like you were saying diet and exercise is enough to fight cancer - if you are using it for recurrence prevention in lieu of adjuvant treatment I would interpret that to be cancer fighting. I definitely don't deny that diet and exercise are important, I follow the Virgin Diet and maintain a healthy weight and exercise as often as possible, but I do that in addition to taking an anti-hormonal.
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hap - the problem with an overall number is that it encompasses the many diseases that make up breast cancer - it becomes apples and oranges because each person’s recurrence risk is not the same. Any statistic would be too general to have meaning to us as individuals, I believe. I know we had a previous conversation on this thread on our Predict 2.0 stats, and the OS numbers were very different based on tumor size, nodal status, age, etc. My numbers and recurrence risk would have no bearing on yours whether I completed treatment or not
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hapb, i am on tamoxifen. What were you wondering
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HapB-while I am not as knowledgeable as Special K on all the stats, one reason why there aren't as many stats could be due to the fact that Herceptin was just approved in 2006, I believe. It was a major game changer. So it is hard to have really long term studies on recurrence for triple positive as you only have 12 years with approved treatment, maybe a little more if they are still following people from the trial time periods. I think triple positive treatment has many more options now than some other types of breast cancer, but all are pretty new.
On another subject, does anyone take cbd oil, and does it help for joint pain, etc? Just curious. I'm thinking about it.
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hap - I’m not sure that answer truly exists. If being triple positive meant that we all got the same treatment it might, but we don’t. In addition to different chemo regimens and different combinations of targeted therapies, different anti-hormonal drugs, there is the question subtyp, neoadjuvent vs adjuvant chemo, how treatment efficacy is affected by hormone receptor levels, and the differences in both DFS and OS just based on staging factor prognosis. I don’t believe being that triple positive is homogenous enough for that stat to have any value even if you could find it. What would be the purpose?
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hapb, i am 44 and according to the last blood test i had i am considered post menopausal. Haven't had a period since the first week of February 2017.
Sorry i couldn't help you. Check out the tamoxifen thread
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hap - here is some info for you, but again recurrence varies by so many clinical factors you can't extrapolate it and apply it to individual cases. My recurrence risk, untreated, is not the same as yours because of the differences in our diagnosis. It is not a stretch to state that the advent of Herceptin meant that fewer HER2+ patients died, and anti-hormonal meds prevent recurrence but the nuances of risk are different for each of us - one treatment survival stat for the whole group of TP patients will not be informative.
https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-015-0568-1
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ALL,
I think it is a crapshoot (a risky or uncertain matter) as to who gets cancer, who does not, and who it returns to. I bet, in generations pass me, medical experts will be able to test a newborn for "predictable diseases" at birth. I think one day we will come that far.
I also think that life changing decisions are asked to a breast cancer woman while she is experiencing the early shock of a cancer diagnosis. Decisions like amputation or not, chemo or not, radiation or not ... and so goes the list.
I am pretty sure all the drugs have taken saved my life and changed my internal and external body in ways I will never know or fully understand. I don't think I will ever have decent finger nails again. I look at my nails and try to be grateful I have fingers. I have an eye appointment next week because my vision is changing again. This will be the fourth Rx change for my vision since I started chemo in August 2016. I am grateful my contacts come in a 30-day supply! My Optometrist Insurance POC called yesterday to say I needed to wait until April for my insurance to pay for an eye exam since that is the time of my annual exam. I asked her to review the number of times and corrected Rx's I have had since 2016. When she saw the pattern (and probably heard the frustration in my voice) she told me not to worry about anything and she would take care of the insurance referral with my Primary Care. She said they would use a different code. I have encountered some great, caring people along this journey.
I think the reason my original Oncology Team pushes anti depressants so much is to mellow out the woman. I know that is a cynical side of me that I don't often show but it is what I believe. I know seeing a Psychiatrist was the right call for me to get the right drug for me.
I know that exercising has improved my life and helps with the Arimidex side effects. I am sure I could eat better but I am just going to eat real food and what I like with limiting the carbs and sugars. I do accept that the work style I had coupled with a boatload of stress probably fueled my cancers. I have changed that.
I will say that if I was a vegan, really fit, and got cancer, I would be PO'd and probably eat a couple of pounds of bacon at one sitting. I might just fry up some bacon this morning!
We must each find our own path as to the treatment that will give us life and quality of life. As my Momma use to stay:
"Life is no trial run and nobody gets out of it alive."
Have a great weekend everyone. Do your best with whatever choice(s) that you make. That is all any of us can do.
Love, Vicky
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Vicky, so well said! I personally know someone who had an easy life (hubby was very rich so she didn't work) was a vegan, exercises 2x a day, no fat on her body, never smoked, drank maybe a glass of wine 1x a month and she was diagnosed with stage 4. You never know, she was devastated, kept saying but i followed all the rules, didn't put anything bad in body how did this happen? It just does😣.
I have changed a few things in my life but i still enjoy a beer in the evening, and i freaking love my steak and pasta. Still exercise daily. Still weigh the same i did when i graduated in 1991. Cancer is unfortunately something you really can't control. The outcome and how you take it you can.
I hope to not start a huge debate.
Have a wonderful weekend
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I think an important thing for us to remember is that our bodies are all different and we respond differently to treatment/medications. My MO kept telling me that being overweight, alcohol, no exercise, and stress were associated with cancer but said that even people who follow all the rules like Shelabela's friend may still get cancer. My MO encouraged me that keeping up with the dietary changes I made (no dairy, sugar, alcohol, etc), exercise and maintaining a healthy weight and minimal stress would keep my immune system strong. A healthy immune system can fight off disease better than an unhealthy one. My son told me something that I think is a good rule to live by: my previous poor lifestyle habits created the ideal environment for cancer to grow; change the environment and there is less chance for cancer to return. I don't think there are any statistics to support that, but making good lifestyle choices to the best of my ability and allowing myself to enjoy "treats" now and then ensures I have quality of life while giving me peace of mind.
It seems so difficult to predict which treatment, diet, medicine, or other natural remedy will provide us with a guarantee that we'll never get cancer again, especially because we all have individual responses.0 -
Hapb thanks for the info on the essential oils study, interesting!
Specialk thanks for all the details on your allergies. You certainly have had quite a few challenges in your life but you handle everything with such positivity! I myself have weird allergies so I am being cautious with the essential oils. So far I have not had any reactions to the oils I've tried. I have read that certain oils should not be used by estrogen cancer patients but the info is inconsistent.
I think all the points you made reiterate how our bodies are unique and respond differently to everything we put in or on our bodies. We must make decisions that work best for us as individuals and give us peace of mind otherwise we'll drive ourselves nuts with worry (which is stressful).
I'm always willing to learn about the many ideas available to treat cancer and the side effects. I prefer not to take drugs but will do so to save my life, manage anxiety or pain. I don't like taking Letrazole but am not willing to take a chance that cancer will return. Information is a good thing. But at the end of the day it's a personal choice to determine which applications are right for each of us. Sometimes it gets so confusing!
Hugs to all
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I recently heard somewhere and I don't recall where, the one thing you can't change is your genetics. No matter what lifestyle you lead you can never run from your family history.
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Saw my new onco today and after looking over all my records, she told me that I Was obviously overdosed on TCH. She said some people metabolize the drugs better than others and I must have done so based on my body's response. Too bad there's no way of knowing beforehand how we will handle chemo. She ordered labs, my annual mammo and a ct scan on my abdomen. Any idea what she's looking for with the scan
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Blownaway,
RE: OD'ing on TCH -- I believe it. I swear you had some of the nastiest side effects of all those posting on the July 2014 chemo board. I'll bet the CT scan is just to confirm your ongoing NEDness.
HapB, deni, shelabela, etc...
RE: diet, exercise, etc.. I think that it's hard to live with uncertainty and the reality that we cannot control everything. Diet and exercise are two things that we can control, so it's not surprising that many try to make the most of those factors. I'm OK with uncertainty, maybe because I'm so busy with work and my kids that I don't dwell on it much. But, I am trying to eat better and to exercise more.
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coachVicky, beautifully said! Could not agree more. While I strongly believe that diet and exercise is important, it is unfortunately not the "final miracle solution that we all so wish for".
Blownaway, I just had an abdominal ultrasound. They are just checking to make sure there are no mets in your liver, intestines, etc... protocol, so do not worry.
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I'm just checking in and am catching up on the “debate"
I think you said it great, Vicky! We need to do what brings us each a measure of peace.
Hapb, for some of us, it would be almost certainly a lost battle if we opt to refuse treatment. For me, it was a non issue to pursue the maximum treatment. I also can empathize that in your position - having fought two cancers and now at an early stage of bc - the decision is more vague. I totally get it. But for many of us, it's not much of a debate. When I spoke to this one oncologist in our bc centre (she's practiced for 20 years and often cares for Her2 patients), she put it plainly. She said “before Herceptin, people were dying all over the place".
I certainly agree that exercise and diet are critical in building up our immune system and I've made changes. I've read that diet holds more importance in terms of the prevention of cancer versus a recurrence. I've heard several oncologists state this. I go to a naturopathic oncologist (a naturopath that understands cancer, basically) and he himself told me that a) there are a ton of naturopaths that know little about cancer and that he has had several people come to him who had given up conventional treatments and are now desperate for help and b) that for me, exercise is more critical than diet.
The medical establishment - the practicing oncologists, I’m talking about - are desperately trying to get people into treatment because they have seen what happens when many patients go another way. They are not pharma; they are there to help the patient. People who exhibit radical remission don’t experience it becaus of diet change...their body has some immunological switch that the medical world is now studying and hoping to harness for all patients. I think it is very very dangerous for people to think they will conquer without conventional treatment. And by the way, Hapb, I’m not referring to you here at all. In your position, I too would be wondering when enough is damn well enough
From what I've read and taken in, I think you eating your steak and having a beer is fine, Shela. I don't believe for a minute these will be a tipping point. But ultimately, we need to do what we need to do to feel we are optimizing our well being (which includes our emotional well being).
Interesting discussion. My own stance is that I had no choice. In spite of my fears of side effects that are serious, I still feel I had to do this.
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I know it's a fact but when I read "before herceptin, people were dying all over the place" ..... I get a dose of reality
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How do you all feel about parabens? Do I really need to throw out all my Clinique and Loreal cosmetics, face lotions, etc.? Goodness gracious, I wish all of this was easier to navigate! Can parabens make that much of a difference? I'd love to hear your thoughts on this!
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Hi, I’m new to this. Just diagnosed in January and on 2/12 had a lumpectomy and 4 nodes removed ( all clear)and reincision to clear margins done two days ago. So far, I know I am triple positive and Stage 1. Waiting for the rest of the testing to be complete by next Friday when I go back to see the surgeon.
Needless to say, I am very nervous, anxious and don’t even know where to begin. I’ll be here asking questions and offering an ear (or virtual shoulder to lean on) if it helps. Thanks for the great community you’ve formed
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hello Ladies,
Hope all of you have a relaxing weekend.
Jstarling, so sorry to hear you had to join us, but glad you found this group. It is an amazing group of the strongest women, beautiful inside and out.
Please feel free to PM me if you need a shoulder to cry on, or if you have questions. I am here for you, in fact, we all are. Hugs, and let us know what's going on
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