STEAM ROOM FOR ANGER
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Every cancer is different and that is what some people do not get who have never had cancer. Some are more advanced and have different treatments no matter what type you have. They are all terrible.
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Hey there.
Newly diagnosed as MBC (literally from lump to stage 4 bye bye Felicia in 6 weeks) and I have a bone to pick. Now, I am sure this is not the first time it has come up (for which my apologies) but I really need to vent, as I am concerned I am perilously close to punching the next person who tells me to "be positive"
Number 1: for me that is in the same area as people who tell other people who are angry to calm down. I mean, realistically, when someone has already combusted that generally does not work well.
Number 2: Why do I have to be singing and dancing? To make you feel comfortable?
Number 3: Why do you assume that I am not positive just because I am not singing and dancing, but trying to come to terms with a pretty scary diagnosis. Toxic positivity is also not healthy. I am not getting ready to lay down and die, but I am trying to manage my expectations and make the plans needed for my family and children (you know, the whole plan for the worst and hope for the best)
Number 4: Why is there only 1 suitable way to deal with this?
Anyway, just really, really needed to get that off my chest.
Along with my aunt/second cousin/this girl I went to school with had the same as you and she is now in remission/still here 20 years later/running a yoga retreat etc. this is the comment I receive most often in the "non helpful" column. I appreciate the good emotion behind it, but honestly the toughest part so far about telling people is needing to manage their feelings by not reacting, so appreciate the chance to share it with people who (at least some hopefully) get it!
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Exbrnxgrl - Oh, your poor mother. I can totally understand why she was never able to get over it. My mother managed to get a couple of years after being diagnosed and the drs told us she did better than expected. For that I was glad. They had assumed she would die pretty much within a year of her diagnosis if that. Re your mother, there's always that thing about how a parent should never have to lose a child, but a youngest child would hit even harder, I'm sure. My sympathies to your whole family.
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@usethepointyend welcome to the mbc club - a club nobody wants to be part of. I understand your vent. I also went from lump to mbc in a similar timeframe. The endless positivity can generate some fairly interesting responses depending on what sort of day I have had. I really like your breakdown of the key points of the behaviour underpinning the positivity. I give my kitties some heavy duty cuddling if i am really peeved after a "be positive - you are a warrior" conversation from a friend. Although I also get those conversations from people I barely know and who do not know me particularly well. You will find support here without judgement.
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usethepointyend, I hate toxic positivity, too. I think it often is about other people feeling uncomfortable talking about bc so they try to be upbeat. I also think there is a lot of societal conditioning of women to put a positive spin on everything, even something as ugly as bc. On top of that, women are expected to put other people’s feelings before their own, even when discussing their own bc diagnosis! What a shame! It is okay for women to have strong negative feelings when dealing with bc. All the feelings must be dealt with. We can challenge society’s pressures by telling people, “Maybe I will get to a better place with this, but right now I am scared, angry, worried and upset and I’m not going to apologize for feeling this way.”
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Divine, wonderful response to someone who wishes to gloss over another's medical dx.
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Oh, that positivity thing hit a nerve! If one more person ascribes my longevity to my positive attitude, I may let out a stream of not so positive expletives 🤬. So are they implying that those who have passed contributed to their own demise by not being positive? And don’t get me started on the whole fighter/warrior stuff either!
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Oof! I hate the “be positive” crap. I say it’s okay to have hope, but let the individual dealing with it have their emotions.
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Exbrnxgrl
Exactly! At my last MO appointment, I told her that I was really tired of modern medicine blaming the victims! She had just asked me, with a bright smile, whether I was "eating healthy and exercising" as that could prevent a recurrence. So if I don't do those things I have nothing but myself to blame for a recurrence? I reminded her that for decades I ate vegetarian, never smoked, drank only occasional small amounts of alcohol and worked out multiple times a day. Didn't prevent me from getting BC or from advancing to Stage IV 2.5 years later. I suggested that the "studies" she cited were a load of crap intended to dump guilt on women who are already struggling.
I choose what to eat and whether to exercise based on how it makes me feel in the moment, and sometimes the best thing in a particular moment is putting my feet up with a pint of Ben & Jerry's. Screw the guilt!
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eleanora, I’m so glad you spoke up to your MO. I hope your comments to her will make her reconsider asking the same question to her other bc patients.
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If I see one more ad for something to "prevent a recurrence" I think I'll scream. Even my MO, when I asked her about cutting out wine, said, "If it's something you enjoy, then why not?" I'm mean, what's the worst that could happen? A recurrence of my recurrence? Sheesh!
Love you ladies!
Carol
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Just want to say how much I agree with all above re "positivity", and the brave warrior on a "journey" business.
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usethepointyend you can feel how you need you need to deal with this right now. No one can tell you differently. Everyone is different in how they handle things. For someone to come and tell you it is wrong to feel one way is crazy. No one can tell someone their emotions in any situation in their lives. What happened to being nice to people and compassionate? You are supported here.
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I am just so angry - not at specific doctor or person or medical system - Just about the situation. I was recently diagnosed with liver mets - an incidental finding when I was having an ultrasound for something else. I am 4 years out from my original diagnosis and did all the damn things I was supposed to - exercised more, drank less, watched my diet.
I did the chemo to prevent recurrence, opted for ovarian suppression and aromatase inhibitor because it was slightly more effective than tamoxifen to prevent recurrence - I did all the things!
Now I feel like it all out of my control with so many unknowns and I just need to vent about it before moving on.
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Irr,
Your reaction is very common among those who have had treatment at an earlier stage and then recur. I can only say allow yourself to run through all the emotions that you’re feeling. As you develop tx plan and time softens things that anger usually diminishes.
Despite your earlier tx and everything you did to put yourself in a favorable position, there is simply nothing that guarantees that one won’t recur and I wish doctors wouldn’t encourage people to believe they are cured when in reality there is just the absence of recurrence. Yes, most early stage patients are treated and never recur but across all lower stages, about 30% do.
Here’s the part you may not want to read. It is out of our control. I have seen major improvements in tx and increased longevity for many which is cause for hope. But the question of why some progress and/or recur, is still without an answer. The same with tx. Why do some do well on a given tx but not others? But the bottom line is that neither diet, exercise nor any other lifestyle habits are a guarantee of anything with bc.Vent away! This is a rough time. Once you have a tx plan in place and a bit of time has passed, it will get easier. Take care
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To all of us who are tired of the “positivity” junk, have at it!
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@Irr I feel you! I had just traveled the whole gastric bypass journey and lost 35kg to be a healthy weight to "live long and healthily with my family" only within 2 months to get this sh*t sandwich served. I also had gone on and off to the doctor for two years prior telling them something wasn't right, I didn't feel right, I believed there was something screwy with my hormones only to hear every time that it was just because I was overweight. So angry at everyone and everything linked to the health profession.
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I am so sorry this happened to you. You did all you were told to and tried hard and it is terrible for you.0 -
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I been looking at this thread and didn't know if I need to be "here". But today I do, I just want to say I hate all these meds that the docs gave us because its a regime that has clinically "proven" to work but kills quality of life (QOL) and mental health. Why can't governments acknowledge that our food supply could have cause all these increases of cancer rate since the introduction of processed food and PFOS and REALLY do something about it? Same on finding ways to clear the plastic and metal contaminations from our soil what our food supply needs.
Why cant someone pay and do clinical research on "natural" stuff that would work and don't kill our quality of life, like honey like tea, etc? Is it because there is no profits to be made if its proven they do work? Why won't anyone research and acknowledge that these drugs could and can and have cause withdrawal symptoms that made our QOL worst than being on the meds? That these drugs could also open doorways to other cancers and other health problems like heart disease? I so regret agreeing to taken lupron as it is killing my "positivity" to fight for me and my family. Just need to vent as I have stop taking more doses and I strongly feel that I am now having withdrawal symptoms. This has been increasing all the negativity and depressive feelings inside me. I need to fight, but this is trying either take the fight or stymied my fight…
So need to vent…
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Zen, Im sorry youre having problems with the meds youve been prescribed. Have you told your MO about those problems? Some people have to try several alternatives before they find one that doesnt have side effects.
People have been getting cancer for centuries, probably since the beginning of human life. There have been health risks throughout history, and when one is eliminated, another comes along. So many people used to die of undetected cancers, or they were found too late for whatever treatments were available at the time. What has really changed is testing to detect diseases, and finding them earlier so more people either recover from cancer or live longer with it - which is part of why the statistics show more cancer patients.
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@zen1028 i started taking bitter apricot seeds which contain b-17. I take 7 in the morning and 7 ar night by using a coffee grinder and grinding them AND some granola and adding it to yogurt! My mother in law is holistic and used those (and a few other things) for her husband who had a large tumor on his lung. Once he started the seeds his tumor was shrinking randomly with NO treatments, (the dr was totally stunned) then started doing radiation. Between the two the tumor shrunk like 97% and he opted against surgery for now. I hadn’t had any treatments yet and my last ct scam showed my tumor shrank 2mm.
I truly believe in these seeds.
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ebfitzy, those seeds are poisonous!
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I've heard the same thing, Alice and ebfitzy. I also know people that are sold on the idea of this being a cure, and they take it. It's the old Laetrile, now referred to as B17 ( not really a B vitamin).
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when you find something that potentially aids in shrinking a tumor, I’ll take my risk! I don’t take it in large enough amounts to have cyanide poisoning anyhow. However, I will be anxious to see my final surgical pathology report as I see often the scans don’t alway have the measurements of the tumor as they show in the pathology report.
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There has always been controversy over unproven cancer treatments, backed up by anecdotes or personal testimony vs data based research. There appears to be no conclusive research data to demonstrate cancer fighting properties of b-17, though there is early research to show it may be helpful for some cancers. There have been no human trials. Personally, I’m a data gal and although anecdotes can open science up to further exploration, the plural of anecdote is not data. However, each of us makes our own choices and decisions. I found this article to be helpful but I can no longer copy/paste things on bco. Let me see how I can paste it here…
What to Know About Vitamin B17By Cathy Wong Updated on April 09, 2024 Medically reviewed by Douglas A. Nelson, MDPrint Table of ContentsVIEW ALL
Vitamin B17 is a commonly used name for a chemical called amygdalin. It is used to make a chemical called laetrile, a compound that some people claim can treat cancer naturally. However, there is little evidence that laetrile works or is safe.
Amygdalin is sourced from certain plant products like apricot pits and bitter almonds. Although they're called "vitamin B17," amygdalin and laetrile are not B vitamins.
This article will define what vitamin B17 is. You will also learn about the claims made about amygdalin and laetrile, as well as the side effects and safety concerns linked to them.
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Morsa Images / Digital Vision / Getty ImagesWhat Are the Different Kinds of Cancer?
What Is Vitamin B17 Used For?
Some people claim that laetrile is an effective natural cancer treatment and that it can also protect against high blood pressure and arthritis. However, little scientific evidence supports any of these uses.
Laetrile is not approved by the Food and Drug Administration (FDA) for any use, including as a cancer treatment.1 In fact, in 2019 the FDA issued an import alert for laetrile based on a lack of evidence for its effectiveness and its status as an unapproved drug.2
The National Cancer Institute (NCI) states that there is no evidencethat our bodies need laetrile or that it acts as a vitamin in animals or humans.3
How Vitamin B17 Is Claimed to Work
Claims that vitamin B17 is a natural cancer fighter rests on a mechanism called apoptosis, which is a type of cell death that takes place because a cell is cancerous or infected, or because it is time for new cells to replace it. Apoptosis is one of the ways your body keeps itself healthy.
When you consume amygdalin, your body converts it to cyanide, a chemical that can be lethal if you consume too much of it.4 Some people claim that the small amount of cyanide that laetrile releases causes apoptosis (cell death) in cancer cells. The idea has been promoted for several types of cancer, including:
Some scientific evidence has suggested that laetrile might have some anti-cancer activity, and the findings have renewed interest in its potential effects.
However, the evidence is still preliminary and needs more follow-up research to find out the true effects of laetrile and the potential risks of using it.9
Some people have claimed that cancer is caused by a deficiency of vitamin B17. They argue that consuming laetrile can reverse the deficiency and, in turn, aid with the treatment or prevention of cancer. However, there is no evidence that the body has any known uses for vitamin B17.1
What Are the Different Ways to Treat Cancer?
How Did Laetrile Get Popular?
Laetrile's popularity has been bolstered by conspiracy theories. For decades, people have claimed that laetrile is proven to be safe and effective or that it's the target of a government cover-up of inexpensive cancer treatments.
Despite the FDA ban that went into effect in 1987, many people still take laetrile for cancer. You can get laetrile online and in some stores.
However, the products cannot legally be marketed as a cancer treatment. Still, with false claims all over the internet, people learn about laetrile and seek it out.
The 5 Signs of Medical Quackery
Amygdalin has been used as an anticancer treatment since the mid-1800s. Laetrile was developed during the 1950s as a purportedly non-toxic version of amygdalin. Laetrile has been studied in animals and humans, but it still isn't known if or how well it works against cancer.10
What Research Says About Vitamin B17
Vitamin B17 could be worth studying more, but the research so far has only been done on cells in a petri dish or on animals.
While this type of research can lay the foundation for clinical trials with people, the science is not at that stage yet.
Promising Research
Some research on laetrile and amygdalin as cancer treatments has been published in reputable journals. For example:
- In 2021, researchers said that they uncovered the mechanisms by which amygdalin induces apoptosis: It appeared to increase one cellular protein and reduce another. They also saw other beneficial actions at the cellular level, stating that "amygdalin possesses anticancer properties and induces apoptosis," and that "amygdalin can act as a multifunctional drug in cancer therapeutics."11
- In August 2020, researchers said they demonstrated that amygdalin can kill certain breast cancer cell lines and that amygdalin may prevent those cells from spreading through the body. They also stated that it was not toxic to healthy skin cells.7
- In June 2020, researchers combined amygdalin with an enzyme called beta-glucosidase (ß-glu), which enhances amygdalin activity. They found that the combination led to the death of prostate cancer cells. They also noted that while the treatment had some impact on heart and liver function, it did not appear to cause organ damage.5
Is It Safe to Take Vitamin Supplements During Cancer Treatment?
Inconclusive Evidence
The studies that have been done have not been clear about whether amygdalin could be more effective against certain types of cancer than others.7
The scientists doing the studies have said that there is a need for more research to determine what role amygdalin might play in cancer treatment.128
There are several important considerations for something like laetrile to be an effective cancer treatment, such as:
- It needs to be delivered in appropriate and consistent dosages—which have not yet been established and likely are not possible to get through diet or unregulated commercial products.
- It needs to be able to survive the digestion process and the body's other protective mechanisms until it can get into the bloodstream and tissues in amounts high enough to be therapeutic.
- It should combine with or be broken down by the body's enzymes and other substances in ways that make it useful rather than inactive or harmful.
- How a person responds to it could be influenced by the makeup of their gut microbiota (the mix of bacteria in the digestive system).
Which Foods Fight Lung Cancer?
Criticisms
A review of research evidence on amygdalin published in 2016 highlighted some of the key criticisms that are important to keep in mind.12 For example, the researchers said that:
- Several aspects of amygdalin use "haven't yet been adequately explored, making further investigation necessary to evaluate its actual therapeutic potential."12
- Claims that laetrile or amygdalin can benefit cancer patients are not supported by sound clinical data.13
- None of the previous studies evaluated were high quality enough to meet the reviewers' criteria. They concluded that the consumption of amygdalin carries a considerable risk of serious adverse effects resulting from cyanide poisoning.13 The authors of one review concluded that "due to the risk of cyanide poisoning, the use of laetrile or amygdalin should be discouraged."13
Food Sources of Vitamin B17
If you want to get more amygdalin naturally, there are some food sources to consider adding to your diet. However, it's not a miracle cure. You also need to avoid consuming too much vitamin B17, which can lead to cyanide poisoning.9
Natural sources of amygdalin include:
- Raw almonds14
- Lima beans, mung beans, and butter beans
- Clover
- Sorghum3
- Carrots
- Celery
- Bean sprouts
- Nuts
- Flaxseed15
Although it is technically possible to consume a lethal dose of amygdalin when you eat these foods, you would have to eat much more than most people typically consume in one day.
However, because amygdalin is present in many different foods as well as in drinking water, there is some concern that people who regularly consume these foods could be exposed to concentrations of cyanide that are large enough to cause chronic health problems.14 For this reason, you should consume these foods in moderation.
Can Certain Foods Lower Your Risk of Having Breast Cancer Come Back?
Side Effects and Safety Concerns with Vitamin B17
The B17 products that are commercially available have not been proven to be safe or effective, and they are not regulated.
Many laetrile products that are commercially available in the United States come from Mexico and they are untested. In some cases, contaminated products have been found.9 These products may pose serious threats to your health that go beyond the risks of using laetrile.
Laetrile-containing products have been found to trigger a range of side effects that are similar to those of cyanide poisoning.1 For example, they can cause:
- Blue coloring of the skin
- Confusion
- Nerve damage
- Dizziness
- Droopy upper eyelids
- Headache
- Liver damage
- Low blood pressure
- Nausea and vomiting1
- Fever
- Coma
- Death3
In fact, some people who use vitamin B17 as a cancer treatment die from cyanide toxicity.16
Cyanide poisoning is a life-threatening emergency. If you or someone you know is experiencing these symptoms, you need to get immediate medical help.
Are Vitamins and Supplements a Waste of Money?
In one study, researchers wanted to understand why some people who take amygdalin get cyanide toxicity and others do not. They also wanted to find out why it's more common when amygdalin is consumed compared to when it's injected.17
The researchers discovered that certain gut bacteria have high levels of the enzyme ß-glu, which converts amygdalin to the toxin hydrogen cyanide (HCN).
A person's ß-glu levels can be influenced by several factors, including:
- Taking prebiotics or probiotics
- Other supplements or natural products they use
- Obesity
- Diet
- Age17
Vitamin C may boost the amount of cyanide that laetrile releases in your body. That means that it could raise the risk of toxicity.
Should I Take Vitamin C Supplements?
Alternatives to Vitamin B17
If you're thinking about using vitamin B17 for the prevention or treatment of cancer, you need to know about and understand the potential threats to your health. Talk to your provider about the safest and most effective way to treat or prevent cancer.
There's no proven way to eliminate the risk of all cancers, but there are some practices that we know support your overall health and may help reduce your risk for disease, including cancer.
For example:
- Avoiding smoking and tobacco use
- Getting recommended cancer screenings
- Following a nutritious diet
- Exercising regularly
- Maintaining an optimal weight
Which Cancer Screenings Do I Need?
Summary
Vitamin B17 is sometimes used to describe the chemicals amygdalin and laetrile. Despite the name, these chemicals are not really vitamins. Vitamin B17 is sometimes used as a natural cancer treatment. Research on vitamin B17 is limited, however, and to date there is little evidence that it works against cancer.
Vitamin B17 can be found in foods like raw almonds, flaxseed, bean sprouts, and lima beans. When you eat these foods, the chemical amygdalin is converted to small amounts of the poison cyanide. Although you would have to eat a lot of these foods to consume a lethal dose of cyanide, it is possible that smaller amounts could cause chronic health problems.
How to Protect Yourself From Medical QuackeryStudy: Don't Rely on Amazon for Legitimate Supplements17 Sources
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By Cathy Wong
Cathy Wong is a nutritionist and wellness expert. Her work is regularly featured in media such as First For Women, Woman's World, and Natural Health.See Our Editorial ProcessMeet Our Medical Expert BoardShare Feedback
0 - In 2021, researchers said that they uncovered the mechanisms by which amygdalin induces apoptosis: It appeared to increase one cellular protein and reduce another. They also saw other beneficial actions at the cellular level, stating that "amygdalin possesses anticancer properties and induces apoptosis," and that "amygdalin can act as a multifunctional drug in cancer therapeutics."11
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@ebfitzy, it might be an idea to discuss with your medical team any supplements that you take. While your health decisions are yours and nobody else's, it is only fair to your medical team to let them have all the information about supplements etc to inform their suggested treatment options for you. Just a well-intentioned suggestion.
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Hi Ladies
This is exactly what I am referring to. There is potential but no one moving/funding these to a human trial. In vitro they work, but there is no funding to find out how it could/may work in humans. Without the actual data from a human clinical trial, these will never be proven to work as any cancer fighting arsenal or a hocus pocus wishful thought.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3586458/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9325146/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6503386/
Yes flaxseed contains cyanide as well and to remove it, just need to boil it for 5 min. This is what I been doing and eating with tulang honey and drinking about 2-3 cups of hibiscus tea daily.
I have told my MO about the pain points I am having right now. I am seeing a social worker he has refer me to. I know I need to be where I was before I took this lupron shoot. I can only hope that whatever I am experiencing will go away once this drug leaves my system and won't stay with me forever. There is no guarantee that cancer wont come back as it is derived from our own body cells. Something happened in our bodies that these cells were able to progress to the cancerous state. We need to teach and boost our own bodies to recognize and deal with it as it starts. In my opinion, one of the best way is thru food, a source that we need daily. It's not going to be perfect but it's not as harsh to our bodies like these drugs. I am not saying a NO to any drugs as they have proven to work in it's own way to help us fight. Just need to know why has holistic approaches not been explored as a possibility, but virus like measles and polio has.
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zen,
Short answer… because preliminary trials for some more holistic treatments have not yielded good results so receive no further funding. Over my 12 years as a bc patient, I have seen many promising preliminary research projects, both more holistic as well as conventional, come to nothing.
Your links are not live. I usually repost links for members to make them live but I am having trouble pasting links on bco lately. I’ll give it my best shot.1 -
Sorry, still having “paste “ issues, but only on bco! Maybe someone else can make them live.
One comment on the food topic. Most of us are aware of healthy eating and some of us have really gotten into very managed diets or food protocols. If that feels right to you, then by all means do it however I have yet to see any empirical evidence that this helps in the long run. I do think medical researchers have looked at food and its effect on cancer but have yet to find evidence to support some theories. Yes, chemo and other drugs taken by bc patients are harsh but they have the science behind them and, though not 100% of the time, they work for many whose lives would have otherwise been cut short.As for me, although I went through about 6 months of thinking I could control my bc with diet and supplements, I hated it! My diet was decent to begin with yet I was stage IV de novo. I have since eaten whatever I want , whenever I want. I have had progression free mbc for over 12 years. And this is why anecdotes have limited value because there is simply no way to attribute my longevity to diet or lifestyle. You need far more than testimonials to prove efficacy. I also watched my sister, who lived and ate clean before that was even an expression, be diagnosed with a uterine sarcoma. She passed away within 6 months, angry and bitter that she had been so diligent about what she put in or on her body for her entire adult life, only to be quickly cut down. So yes, I do look at diet and lifestyle as a piece of the puzzle but not the cure.
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