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

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  • anotherone
    anotherone Member Posts: 547
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    jojo, so you are 4 years on after diagnosis of lobular cancer with bone and peritoneal metastasis on complementary treatment alone??!!??!!( other than initial surgery and radio)

    Exercise guru, I have a liquid fast for about 16 hours/day but I did not research it much - I remember I read about it , thought it made sense and followed it. Is it what you talking about ? In practice it results in me skipping breakfast and not having midmorning snacks, that is all.

  • heidihill
    heidihill Member Posts: 1,856
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    We really do need mathematical modelling to figure all this out as not all cancers are the same and personal variations are key. It could even be that half of all cancers do not exhibit the Warburg effect, which would throw a wrench into the metabolic angle for many folks. No one really knows. Having said that, there is an energy aspect to all cancers: "Gatenby's approach assumes that when treatment is removed, drug-resistant cancer cells will replicate more slowly than drug-sensitive cells. The theory rests on the assumption that those resistant cells need lots of energy to maintain their armor against the medication meant to kill them. During treatment breaks, the thinking goes, the fuel-hungry resistant cells are outcompeted by drug-­sensitive cells, which need fewer resources to thrive." Maybe sugar is that vital resource for some, glutamine for others, ketones for a few, estrogens for many of us. Most likely it's a little bit of everything or different things at different points in time.

    I have looked into Longo's work but can't sustain that fasting-mimicking diet. When I started with intermittent fasting (IF,) maybe 9 years ago now, he was doing work with Laron Syndrome and IGF1 inhibition as an anti-cancer strategy. I wasn't so convinced of that for me given that I needed IGF1 to strengthen my bones. I thought of IF as an alternative either as time-restricted IGF1 inhibition or general time-based energy restriction. In the beginning I did an eating window of 7 hours from noon to 7, including an hour of unfed exercise before noon. I did that for a year and started doing just 12-13 hour nighttime fasts after that. I also followed some of Dr. Servan Schreiber's tips (here encapsulated: https://healingjourneys.org/20-new-anticancer-rule...)

    The fact that bone metsers have longer survival points to the importance of the crosstalk between immune cells, cancer cells and the bone microenvironment. Zometa is an aid here, I would think. I wonder if giving Zometa or Xgeva to all postmenopausal metsers would extend overall survival? It seems to be suggested for early breast cancer https://www.breastcancer.org/research-news/2014012...

  • divinemrsm
    divinemrsm Member Posts: 6,151
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    I'm another person who questions whether cancer is a metabolic disease affected by diet. I only had recent progression after eight years of stability with bone mets and I'm er+her2-. I don't follow any kind of strict diet. I did for the most part eliminate diet soda and upped the fruits, nuts and veggies. But like candy, no way am I depriving myself of some great meals. I eat everything in moderation.

    And what about all the literally countless people who ate a clean diet all their lives but still got cancer? How does that make sense of the metabolic idea?

    Even ten years is not long enough for me to say, yeah, chronic disease. Come on. I want more than that kind of statistic! I'm eight+ years out and let me tell you, I want another 18 years at least! Is a person with diabetes gonna be happy with, okay, here's your diagnosis, but the good news is you got ten years." A chronic condition to me would be something one could live with for at least 25 years. Look at these young mothers with metastatic bc. If they are 35 or 40 years old and have young kids under age 5, that ten years is not enough!

    Speaking of diabetes, what other diseases are considered chronic? Diabetes seems to be the only one tossed around as an example.

  • anotherone
    anotherone Member Posts: 547
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    high blood pressure

    Angina

    Hyper/hypothyroidism

    IBS

    Crohn's disease

    Asthma

  • anotherone
    anotherone Member Posts: 547
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    yes divine , until the lifespan is comparable with non diseased it is not chronic

  • candy-678
    candy-678 Member Posts: 4,126
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    I agree with the statements that it should not be considered a chronic disease until the lifespan is longer that 10 years!!!!! And for the MAJORITY of MBC patients, not just a select few. I praise the bone metesters, and they do seem to have a better survival outcome, but to label MBC as chronic should include most of the MBC population. Also, I cannot remember who posted about their MO saying they should have another 25-30 years and I cannot figure out how to go back to previous page to reread without loosing my draft of my post. But IMO I don't think that MO should have said that. IMO that statement devalues our condition. I know the docs want us to stay upbeat and fight this, but a statement like that is not true statistically. Don't get me wrong, I hope that person does survive that long and more. But the docs need to be realistic about this and not give false hope. Please do not misunderstand me or get upset. Please.

  • olma61
    olma61 Member Posts: 1,025
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    I think the problem is the word chronic itself really doesn’t have a clear definition. Illnesses can be described as chronic vs acute - acute being something that arises and is resolved in a short period, chronic meaning something that is ongoing.

    Webmd and other reliable sources mention “lasting three months or more” in their definitions of chronic. By this definition, BC is already chronic, even Stage IV.

    Here’s a discussion from a medical journal which discusses the inexact meaning of the term.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4969287/

    Maybe the definition we want is “no longer a death sentence but something manageable that doesn’t greatly shorten our normal life span”

    HIV is an example of a chronic disease that went from “death sentence” to “ manageable”

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    Olma I like what you wrote, that does make more sense in my brain linguistically.

    When I was diagnosed de nova in 2017, my MO told me 1-5 years. How’s that for placing fear into someone’s soul?

    My ND said, “congratulations! You have a chronic disease!” And then proceeded to tell me about her very first patient who lived for 30 years with the same diagnosis. She died in her 80s due to heart failure (maybe treatment-related or maybe not? No one knows!).

    The relief I felt from my NDs words of hope was invaluable.

    It has taken me a LONG time to let go of the 1-5 yrs of life left that my MO told me. Those words sank into my heart and have haunted me. I try to push them out. As of right now, I am 2 years and 5 months since my diagnosis and stable.

    I want to be realistic, but it is so difficult to imagine my going downhill so fast in the next 2.5 years. I do feel like 8-10 years at least is more realistic for me.

    It makes my stomach turn upside down just writing and thinking about it!!!

  • candy-678
    candy-678 Member Posts: 4,126
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    Philly- I am glad you found hope in the words of your ND. And I pray that it bears out true for you. But to label MBC as "chronic" I think the majority of the patients need to fall into that category, not the minority. To tell an MBC patient upon diagnosis that they will live to a ripe old age, that their earthshattering diagnosis is not as bad as it first sounds, that they can and will live a good long life because the disease is a chronic one is just plain wrong. Yes there are those that live a long time--Philly's story of the lady that lived 30 years and died in her 80's of heart failure. But that is rare. MBC is not the same as hypertension, asthma, or diabetes. I wish it was.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    candy I totally get that!

    My mind doesn’t want to accept the truth of the stats.

    And I also know that the SEER info is inaccurate. So this makes it all so much more muddled!

    We don’t actually know how many people are living with MBC in the world.

    So many anecdotal stories too.

    What to believe?

    Who to believe?

    So much messiness to muddle through.

    And we see on these boards our sisters and brothers dying. And we see some still living.

    I wish we had clearer data.

    I haven’t prepared my wills or wishes for how I am cared for in “the end” but I am feeling some internal pressure to get this done. I can barely get myself to exercise let alone fill out this paperwork.

  • divinemrsm
    divinemrsm Member Posts: 6,151
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    Olma, I agree with your comment: Maybe the definition we want is "no longer a death sentence but something manageable that doesn't greatly shorten our normal life span"

    Again, questioning the ‘cancer is a metabolic disease’ train of thought, what about all the cancer causing chemicals in our world? And once someone gets cancer from something like that, are there people saying, cure it through diet? It isn't going to work in all cases. Plus I think the human body is so varied that how one person's physiological makeup metabolizes something versus another is probably wildly variant. I don't think one size fits all fits into the cure.


  • candy-678
    candy-678 Member Posts: 4,126
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    I wonder too about the data. We all say the data is inaccurate, that the numbers are old numbers before the new treatments. That more and more are living longer due to the treatment now. But Ibrance for example has been out since 2014, right? This is 2019. So how often does the data come out?? I know the data will constantly change with newer and newer treatments coming out, but come on why can't the statisticians have out the latest numbers. Maybe they are not as promising as they want us to think.

  • 42young
    42young Member Posts: 124
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    MY MO never told me about how much time i will have & I never asked. I went to Dana Farber for second opinion & after we discussed everything, the doctor kept asking if I have any more questions, but i said no. I think he was waiting for me to ask about time, but i did not. Finally without my asking, he said there are many women with the same diagnosis like me live many years. To be honest, despite of what he said, I always prepare for the worst while hoping for the best. To me 10 years with acceptable QOL is chronic.

  • illimae
    illimae Member Posts: 5,617
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    Perhaps some of the opinions on whether this can be considered chronic or not really depends on age at diagnosis. A “normal life span” and years living with MBC is obviously different for those in their 60’s vs 40’s. I suppose a doc may not say chronic to me but it might apply to someone else.

  • candy-678
    candy-678 Member Posts: 4,126
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    illimae- Good point. I am 48 and hoped to live to 80 or 90. One never knows, but my mom was 80 when she died and my dad is 93 and still alive. But 30-40 years with MBC with organ involvement is unheard of. Of course, we never know what is going to take us--accident, heart attack, etc.

  • olma61
    olma61 Member Posts: 1,025
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    Re - how can it be said that stats are not accurate? First, because they are an estimate based on only a small portion of people with breast cancer in the USA. Second because the groups that are studied often include cases that go further back than even 2012.

    Here's the SEER breast cancer front page. You will see the word “estimated" on the graph and the years 2009 to 2015.

    https://seer.cancer.gov/statfacts/html/breast.html

    I don't think they are so much “inaccurate" as “ not reflecting the whole picture for every type of breast cancer at this point in time"

    Illiemae - yes you make a great point. It’s very different to get this diagnosis at 60 than at 40 or 30. If I get ten good years I won’t feel too cheated, although I’d like more, 70 isn’t a terribly shortened life span. Average LE is I think 78 or 79 in the USA now. I do often think of (and pray for) the younger ladies who get dealt this shitty hand. May we all be around for the breakthrough that makes normal life spans possible for all of us!

    42young...prepare for the worst and hope for the best is a good mindset, I think.

  • mara51506
    mara51506 Member Posts: 6,194
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    I would like mine to become chronic too. Don't want to pass away. I am four and a half years out, body is NED. Brain met was probably there as a few cells in 2015, too small to be seen. I like to hope my brain will stay stable for a longer period of time. I have already had more time than my dx expected. My MO is honestly surprised my treatment is working so well considering I spread to the brain first.

  • divinemrsm
    divinemrsm Member Posts: 6,151
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    Ok, pick your poison.

    Below is what was listed when I asked about other diseases that are considered chronic.

    Let's say, for argument's sake, metastatic breast cancer is now considered a chronic disease.

    If you could have one of these chronic diseases, which one would you pick?

    Who among us, who anywhere, would pick metastatc breast cancer?

    Diabetes

    High blood pressure

    Angina

    Hyper/hypothyroidism

    IBS

    Crohn's disease

    Asthma

    metastatic breast cancer

  • Frisky
    Frisky Member Posts: 1,686
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    Divine,I would take hypothyroidism since I have it already and is easily managed with a tiny pill...

    Heart disease, which can be caused by diabetes is, however, the fastest number one killer worldwide, a slow growing cancer in comparison might be a good bargain....

    Ideally, I would want to be healthy enough, to never need a doctor or hospital ever again...amen

    Also, based on the rate of progress in cancer care we have today, I predict that they will never find a cure, because that's not their priority,and also because these people are obviously not very bright....in any other sector they would have all been fired a long time ago! It's the naked emperors syndrome...we are too scared to state the obvious: our doctors have no useful knowledge and yield dangerous medications that kill us before any cancer will..they're stupid and proud...and that's a dangerous combination for us patients..watch the Emperor of all Maladies...that 2015 documentary puts the failed history of cancer care in perspective, it ends with the premise of immunotherapy...so far only one MBC has been cured, why? they still don't know....

    Oh..And if you think I'm pessimistic or I'm exaggerating...please watch John Oliver's show on HBO this week....the situation is much much worse than I thought!

  • olma61
    olma61 Member Posts: 1,025
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    exactly my thought...how about none of the above!!

    I already have high blood pressure and it's well controlled with one pill.not a big deal.

    Funny story about diabetes vs MBC - my second PET scan, the technician was taking the glucose reading and I said, “it should be fine, my readings are always normal. Type 2 runs in my family, but I escaped it...I guess I'm lucky. But oh..not that lucky..right?" And the tech replied “ooooooo nooooo you don't want diabetes that's a terrible disease"...as if maybe it would be worse than MBC!

    Having both would be terrible...having diabetes instead of MBC though, probably diabetes is the better option....type two preferable if not too severe. My sister has high BP and type two but keeps it controlled with exercise and is on metformin. I don't think she would trade diseases with me.

    Asthma can kill if severe, you must restrict activity...not a picnic. IBS and Crohns are pretty painful I think

    I choose just my high blood pressure and I'll ditch the MBC.

  • anotherone
    anotherone Member Posts: 547
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    it all depends on a degree. Asthma does not have to be severe and I know various people having almost normal life with IBS and crohn's - depends how bad it is, mostly it is not that bad , I have come across only one case amongst those conditions where it was approaching life threatening.

    What a morbid conversation that we have here Scared

  • cure-ious
    cure-ious Member Posts: 2,756
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    chronic disease just means most people have a normal lifespan, so yeah we aren't there yet, but where are we on the curve? The above paper analyzed one group and showed that, for people diagnosed before 2007, 41% of the initial "bone-only" met-sters were alive at ten years; we don't know how long they live beyond that, nor even how many are alive now. Ibrance was FDA-approved in 2015, so it won't be until 2025 that we know how many of us survived those first ten years, surely it will be far more than 41% based on Ibrance, PI3K inhibitors, Alisertib and whatever other treatments come on line. By then, there will be so many more therapies available, if not a functional cure, that those stats will be similarly outdated. The further we go, the closer we are to additional therapies that last a long time for most of us, and so in that sense it seems that right now is perhaps the most dangerous time to get through, because we are headed to a future that will provide more and better options...

  • anotherone
    anotherone Member Posts: 547
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    thank you for putting conversation into a positive channel and explaining statistics so well , Cure-ious.

  • cure-ious
    cure-ious Member Posts: 2,756
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    commenting on the benefit of diet- restricting sugar can have a big effect, but it depends on the nature of the cancer and what is driving its growth. A paper appeared in Nature last year documenting a big effect of the keto or fasting diet on cancers with PI3K mutations, and making PI3K cancer therapy work a lot better. https://news.weill.cornell.edu/news/2018/07/low-ca...

    However ER-dependent cancers that are still sensitive to aromatase inhibitors, they are better targeted by restricting estrogen rather than sugar and doing both doesn't make it dramatically better- different cancers response to food restriction differently- for example pancreatic cancers are more strongly affected than ER+ breast cancer. Endocrine-resistant cancers get a better response, as in the article above for PI3K mutant cancer. Some of you will remember that Z did the Longo fasting diet for late-stage cancer, fasted several days before and after each hit, and she felt that it definitely contributed to the amazing responses she had to her chemo, however it's no cure and the PFS for many chemos is really short- in the end she couldn't run fast enough.

  • olma61
    olma61 Member Posts: 1,025
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    Great info, thanks, Cure-ious! Interesting that the rise in insulin in the mouse study helped the cancer flourish. That sort of confirms some thoughts I have about how my own metabolism may have helped my cancer to flourish.I don’t know my PI3K status though.

  • candy-678
    candy-678 Member Posts: 4,126
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    FYI

    Re: stats

    Dated April 2019------ Article states stats are done every 5 years. MBC 5 year survival rate is 27%. I explain to my family/friends this way: If you are in a room with 100 MBC women, In 5 years there will be 27 of those women left. The rest are dead. Not "chronic disease" in my thoughts.

    https://www.google.com/url?sa=t&rct=j&q=&esrc=s&so...

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
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    I agree, Candy.

  • Anewbreath
    Anewbreath Member Posts: 122
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    Candy- That is gut wrenching to read......I'm a realist when it comes to dealing with life but those stat's are something my mind doesn't want to accept. Having organ mets makes me feel like I'm definitely not on the favorable side of that stat.Praying that the new MBC treatments start to change those statistics for all us! Assuming they include the last 5 years with ibrance out

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    frisky,

    I read your post with great interest. Breast cancer, the only kind of cancer I know a lot about, is incredibly complex as is the human body itself. Not only are there many variables in the disease, but various factors in the individual who have the disease such as weight, co-morbidities etc. I don’t think researchers and doctors “are not very bright”. The complexity of the human body is staggering and there are a multitude of diseases for which cures haven’t been found. It’s also not valid to compare those researchers and doctors to those in other industries that don’t deal with the complexities of the human body.

    I’m a teacher. I’d like to think I’m a good teacher, but the reality is that each year there are some students who leave my class not having met all standards. It doesn’t make me “not very bright” in terms of my job performance and I shouldn’t lose my job because of it. The reason? I teach children who come to me from different backgrounds, home lives that I have no control over, families that place more or less value on education etc. Not only that, but we are also discovering more and more about the brain and learning.

    We always try to do better but in medicine, as in education, we work with humans and there is still so much we don’t know, too many variables that we can’t control.Not at all like manufacturing something or other businesses where variables are easier to deal with. My mo rocks. She does the best she can with what is known now and continues to learn as things evolve.

    I read The Emperor of All Maladies. Wonderful book, that provides a chronological overview of cancer and mans attempts to cure it over time. I don’t see it as a failed history of cancer at all. This is one incredible mother of a disease so the nature of the beast does not lend itself, even after centuries, to cures or even palatable treatments but we’re better off today than 100 years ago. Yes, it is an slow march but we will get there one day.

    *BTW, those “not so bright” folks came up with the medications that have allowed me to live almost normally at stage IV for eight years! I wish this was true for more of us

  • Frisky
    Frisky Member Posts: 1,686
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    exbrnxgrl I respect your perspective on doctors and cancer care..and I'm happy the current medications are working well for the non-aggressive type of cancer you have. Don't we wish that was the norm...but alas that's not the case...would you feel the same about the state of the artsif someone you loved died 22 months after being diagnosed? Which is the current average for stage four? Hummm....me thinks not!

    After reading your heartfelt response, I asked myself why I feel so strongly about the cancer industrial complex, and the answer popped up instantly.

    there's a book written by, what I consider, a really smart woman out there, She studied the results of past medical research to come up with her own scientific and precise protocol that saved her life and can be applied to all cancers. That was 16 years ago, when her garden variety genius oncologist had given up on her,

    What she discovered, and wrote about is so brilliant and simple, her own oncologist left the hospital in London where he worked, and opened a clinic where now he actually saves lives by practicing what she discovered and without SE, I might add....whaoo...can you believe it? I know sounds too good to be true, right?

    She accomplished this amazing feat by herself in within a few month"s time, without spending trillions of dollars, grants money, killing and torturing animals in the millions, without doing any genetic profiling....unbound by conventional thinking about cancer, she researched and used her head to solve, by your definition, an impossible task...so I'm sorry, nothing can be solved if people continue to believe in theories that haven't worked for the past 100 YEARS!

    And that's the reason why I have to conclude that either they're not very bright, or they have no integrity, or both

    You might want to catch up on the scandal that took place at Memorial Sloan Kettering a few month's ago, that involved their leading doctors.

    https://www.nytimes.com/2019/01/11/science/memorial-sloan-kettering-conflicts-boards.html


    Memorial Sloan Kettering Curbs Executives' Ties to Industry After Conflict-of-Interest Scandals


    Sloan Kettering's Cozy Deal With Start-Up Ignites a New Uproar


    Memorial Sloan Kettering scandal prompts wave of medical journal corrections from top facilities


    Believe me...they are all back to their cozy dealings by now....never mind correcting medical journal's findings!!