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Do you think MBC will be truly chronic in the next 5 years??

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24

Comments

  • mazie73
    mazie73 Member Posts: 40
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    Thanks Cure-ious! I've been lurking. :)

  • 42young
    42young Member Posts: 124
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    Thanks Pajim & Mazie for your comments.

  • heidihill
    heidihill Member Posts: 1,856
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  • tina2
    tina2 Member Posts: 758
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    Heidihill,

    Thank you for posting this! I think this is the tack my doctor is taking with me. He certainly didn't get into this kind of detail, but when we talked about going on a hiatus from treatment, he mentioned a few things that I believe are echoed in this article. So exciting!

    Tina

  • divinemrsm
    divinemrsm Member Posts: 6,151
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    Heidi, wow, what a fascinating article! It explains clearly how cancer may possibly be controlled, not necessarily cured using “adaptive therapy”. An interesting and intriguing concept. A life-changing, and/or life-saving concept.

    Tina, it definitely sounds like your onc is using this type of approach which is pretty exciting.

    Here’s a few paragraphs from the article that I liked:

    Knowing the modified Zytiga regimen wasn't designed to rid him of cancer left Butler, the engineer, with a question about how the doctors would measure the success of their new treatment approach. He asked, "How do we know this stuff is working?" And one of his doctors replied, "Well, you won't be dead."

    And this:

    For now, Gatenby is most focused on managing advanced cancers in adults, and doing so as a chronic disease. In that sense, he's challenging the words emblazoned on the outside wall of the Moffitt Cancer Center: "To contribute to the prevention and cure of cancer." Robert Butler has pondered these words too, which he passes when walking into the building for checkups and treatments. "Certainly, in my case there's no intention of cure. What we're doing is control. So that's not really the correct logo anymore, is it?" he says. Butler tells me about a time when he and some of the Moffitt researchers brainstormed alternative slogans. "We finally came up with 'Our aim is to make you die of something else'—which I thought was lovely," he adds. "It's more true."

  • kanga_roo
    kanga_roo Member Posts: 302
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    I recently watched a presentation by Thomas Seyfried who says we keep throwing money at research, but the stats don’t change because big Pharmaapproach is based on dubious assumptions about how cancers develop. His scientific approach is the only data I have seen has given me any hope about getting cancer under control, and at least slowing it down.

    image

    https://www.youtube.com/watch?v=OjpmPtz777s

  • 42young
    42young Member Posts: 124
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    Thanks Heidihill for the article & thanks all for your comments.

  • BevJen
    BevJen Member Posts: 2,341
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    Kanga Roo,

    Thanks for posting the presentation from Dr. Thomas Seyfried. It is fascinating, and also ties into the Jane McClelland and Care Oncology theories of attacking cancer as a metabolic disease.

    I also followed up on an article he mentioned in the presentation which is also very interesting, and which folks might be interesting in reading. The basic premise of the article is that cancer is a metabolic disease and should be treated accordingly, as witnessed by the recovery of a triple negative patient followed in the article.

    https://www.cureus.com/articles/7528-efficacy-of-m...

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    heidihill,

    Good article! It certainly represents a very different POV on “curing” cancer. Personally, whether cured or chronic, I’d just want to keeping living with as few side effects from tax as possible. I have never had chemo, just the AI’s. Both my mo and my second opinion mo agreed that I could try chemo or AI’s and left the choice up to me, giventhat I had a single bone met which was grade 1. I have always been a less is more kind of person and throwing everything at it but the kitchen sink made no sense to me. I figured that chemo would always be there if needed. 8 years later, I am still on AI’s. I feel like I’ve made the right decision but honestly can’t say what it is that has allowed me to do so well.

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Given the metabolic angle I think cancer might become a chronic disease but we also need we also need to be healthier humans. Today the average person is 40 lbs + overweight and prediabetic or diabetic. We need humans to regain their primal level of health through more primal practices re diet and exercise. Metabolic diseases come from processed foods and sugar. Very plain to see. If you have ruined your metabolic health cancer is going to be harder to kill or beat back. Simple fact.

    I am 25 lbs down from diagnosis weight a year ago. I feel fantastic. This is the result of an anti-inflammatory diet (good metabolically) and intermittent fasting. Virtually no sugar, processed carbs or alcohol; rainbow of whole foods + fish and nuts. I'm sorry it took cancer for me to clean up my eating but have had no trouble sustaining this as I feel so good.

    I take a lot of supplements, and they contribute to feeling good too. Many things I take are on McClelland's lists... curcurmin, berberine, luteolin, ursolic ascid, indol 3 carbinol. EGCG, quercetin, melatonin, metformin (not for diabetes, but for for anti cancer benefit).

    If we keep our immune systems on point, our aerobic condition good, and guard our metabolic health, then we can meet medicine half way!

  • divinemrsm
    divinemrsm Member Posts: 6,151
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    What does that mean, cancer is a “metabolic” disease?


  • santabarbarian
    santabarbarian Member Posts: 2,310
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    The way the cancer cell is unique from the healthy cell is how it metabolizes nutrients to grow and spread. Cancer cells need sugar or glutamine to grow via fermentation. Starve it of both and you will beat back the cancer as it cannot grow without fuel. Seyfried's thesis is that the core difference between a regular and a malignant cell boils down to this metabolic inflexibility, not to genetic mutation. Regular cells can metabolize ketones, so they have a pathway to eat while cancer cells will not.

  • lauriesh
    lauriesh Member Posts: 82
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    I don’t agree that diet plays a role in whether mbc becomes a chronic condition. In a Facebook group for longterm survivors, I did a survey of what people eat. Of the 26 women who responded, only one ate a diet similar to what Santabarbarian talks about. Everyone else ate a “ normal diet” including sweets, alcohol, “ junk food”, white carbs, etc. I eat pretty much what I want. I eat fruits and veggies, but also sugar, fast food, white carbs, etc. I have been Ned for 8 1/2 years and on no treatment for 4 1/2 years . I think for those of us that have reached the point of our mbc being a “ chronic condition “ it is because we responded really well to treatment.

  • 42young
    42young Member Posts: 124
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    Lauriesh, from the result of the survey you did, are most long term survivors are HER2+? I asked this because i saw many long term here are HER2+, not many HER2-.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    Lauriesh,

    You go, my friend! I pretty much have not modified my diet* from pre-cancer days. I have a terrible sweet tooth and though I don’t always indulge, I rarely deny. Never a fast food fan or bread eater but I do love my rice and pasta. Not a big drinker, but if I want wine or a cocktail 🍹 I have it. It sometimes makes me feel like a bad mbc patient, especially when so many who have put so much time and effort into their diet/lifestyle pass away, but I am quite content and NED for 8 years.

    * I did try to go a a restricted diet, but I was miserable and fought with my family about it when they thought I was cheating. Dropped it, went back to normal, mostly good eating habits, happiness and harmony returned.

  • anotherone
    anotherone Member Posts: 547
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    lauriesh , very interesting info.

    Still it does not disprove that there is a relationship between diet and long term survival.

    Imagine 1000 newly diagnosed metastatic patients, out of them 10 changed their diet. 50 of them are alive 8 years+. Amongst those 50 are 2 people that changed their diet. On one hand the vast majority (48) survived without changing it. On another hand percentage of people who survived without changing diet is 5% ( 48 out of 990) while percentage of people who survived after changing the diet is 20% ( 2 out of 10). So changing the diet quadrupled one's chances.

    All the numbers are plucked out of thin air, just for illustrative purposes of how your data does not necessarily contradict the statement of a particular diet being beneficial.

  • candy-678
    candy-678 Member Posts: 4,126
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    I don't know how I feel about diet and long term survival. Maybe I should eat more healthy, exercise more, etc. I know I should. But I too am a sweet tooth. I don't drink alcohol (never have) and I don't smoke (never have). I don't want to give up the foods that I love - a good juicy hamburger, biscuits and gravy, a big salad with all the "stuff" (bacon bits, croutons, etc), and my sweets. I am not heavy -- 5'1" and 145 pounds and my cholesterol numbers are ok. I am 2 years into this cancer thing and I want to live a long time. But I don't want to spend my last days on this Earth not getting to enjoy sharing a good meal with friends. Just my opinion.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    candy,

    I hear you. I want to be very clear that I am not advocating for a diet based totally on junk food. I just don’t do extremes or restrictions when it comes to my diet. I believe that moderation and occasional treats are what make for an enjoyable life for me. I don’t deny my cravings, but it’s not an all day, everyday thing. I am also not claiming that this has been the key to my survival. I actually don’t know what is, but I never stress about what I put in mouth.

  • lauriesh
    lauriesh Member Posts: 82
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    It doesn’t disprove that diet plays a role, but there are no studies that show diet does improve survival.

    42young, I didn’t ask her2 status, treatments, etc. it was just specifically asking if they followed a certain diet

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
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    Will Stage 4 become chronic in 5 years? I don't know. Chronic to me means having an illness but sort of having a relatively normal lifespan, ie: Diabetes etc. If MBC gets to the point the median survival is 20 yrs, I'd say its chronic, otherwise, I'd say no, I don't think MBC will be chronic. MBC is very unpredictable imo, I've seen many outliers and then many who don't even make the median survival of 3 years. I think whatever helps someone cope in terms of lifestyle changes etc, they should do that, we take whatever help we can get. Since we didn't bring cancer on ourselves, nor were we able to control getting it or not, I don't think placing blame or laying guilt trips serves any purpose. Considering only 5% of research money goes to MBC, i really feel there is so much we don't know yet, in the meantime we just do the best we can with what we can. Freshly into this diagnosis, i wouldn't wish this on anyone.

  • simone60
    simone60 Member Posts: 952
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    I agree with RadagastRabbit, until someone can live a normal lifespan it will not be chronic. I know there are outliers. But I don't see anything changing for most of us anytime soon.

    Re diet. I think a healthy diet helps the body fight infections and disease. There is nothing wrong with cheating once in a while. I eat healthy now, will I live longer? I have no idea, but I do feel better and the SEs don't seem as bad as when I first started treatment.

  • gailmary
    gailmary Member Posts: 436
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    My MO and my orthopedic onc believe were almost there. They each told me I have another 25 to 30 yrs.

    I'm having a hard time believing it after my good friend died last week and she was told the same thing by different doctors and she was diagnosed 3 months after me. She died from the treatment. That's the 3rd victim I heard of this year dying from the treatment. It cant become chronic if they keep doing that. I hope they figure out whats going wrong soon!

    OTOH i still feel pretty optimistic. Every day or two there is another story here about a new drug or theory or treatment etc. Plus I am grade 1 and she was grade 3 and heavily treated nearly 20 yrs ago which would have made hers more challenging to treat. I hope they will learn how to better treat earlier stage cancers so that wont continue to be a problem.

  • olma61
    olma61 Member Posts: 1,025
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    I do know that some oncologists are not hesitating to say that women with bone only mets can survive ten years if they respond to initial treatment. There is a cancer Q&A section on the Johns Hopkins website that I found through Bestbird's book. It is not active now, but there are older questions about BC survival with bone only mets and they consistently said such patients "can live ten years". My MO also thinks this is a reasonable expectation.

    Of course, there are no guarantees for any of us - but there is recognition that existing OS statistics do not tell the whole story.

    I do agree that "chronic" would mean an expected survival more than ten years from diagnosis, though. Diabetes is a good comparison, I think. Although a diabetic's life span "can be" shortened by the disease, even with treatment, they surely have a better outlook with treatment than we collectively do.

  • cure-ious
    cure-ious Member Posts: 2,756
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    Interesting point, Olma! I went to look at that, and here is a compilation of patient data that was published in 2018, they reported that 41% of their patients (who had started with bone-only mets) were still alive at ten years. Many of those may not even have had Ibrance, future statistics will be much higher.

    https://oncologypro.esmo.org/Meeting-Resources/ESM...

  • olma61
    olma61 Member Posts: 1,025
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    Thanks for that confirmation! Yes, I think we've had some good recent developments that aren't reflected in current stats. Reason for a bit of hope, I think.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    I had, literally, a single bone met, dx’ed eight years ago. There was no Ibrance, Verzenio , Affinitor etc. After rads to the met, I went on an AI. I have been on all three and have switched because of se’s. But I know others with low volume bone mets who have not been so fortunate. What a crazy disease

  • jojo68
    jojo68 Member Posts: 336
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    Hi everyone!

    I dont post very often, very much a lurker.

    I was diagnosed with stage 3 Er+/PR+/Her- Lobular Grade 2 7 positive nodes in 2012.

    Had double masectomy/DIEP in 2013.....In late 2014 I was diagnosed stage 4 with bone marrow mets. I believe I also had bone mets at that time as well but Lobular doesnt always show on scans. Early 2018 I was diagnosed with ovarian mets and peritoneal mets. I had ascites a few times but feel pretty much stable. I feel very grateful to be alive with stage 4 disease for about 5 years. My bone mets are very stable, little to no progression, as well as my marrow mets. No pain at all either. The peritoneum does give me some trouble time to time as I have had some ascites. I have managed to keep the ascites away now with Jane McLelland's protocol as well as Hoxsey, Febendazole, LDN and Chinese herbs. I have never taken any hormone treatments, radiation or any chemo. I am, however, considering the combo of Xeloda w/ Celebrex for a kill phase in my McLelland protocol. I am also intrigued with the new PI3K inhibitor and may get Foundation One testing done to see if I am a candidate. I have been following the studies and people are indicating that a low carb diet/keto is essential for the new inhibitor to be effective.

    Anyways, I just wanted to introduce myself.

  • JFL
    JFL Member Posts: 1,373
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    Santabarbarian, I did read that cancer cells can metabolize ketones. As we all know, cancer cells are very resilient and seem to adapt to the environment, whether is be low oxygen, low sugar or whatever else. I have read articles about ketones fueling cancer growth and that cancers that feed off ketones are particularly aggressive.

  • cure-ious
    cure-ious Member Posts: 2,756
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    Jojo, welcome! Five years is wonderful! Did you decline anti-estrogens, or is the cancer endocrine-resistant or are you saving that for a later protocol? Luce is the only other person I've met who declined anti-estrogens..

  • exercise_guru
    exercise_guru Member Posts: 333
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    Sorry to but in here but has anyone followed the work of the Valter Longo and the Fasting Mimicking Diet? He also advocates a longevity diet that is low in animal products. His ersearch is pretty interesting.