Anyone else out there choosing 100% Alternative?
Comments
-
kayb,
That's why the phrase "big pharma" cracks me up. Do people think that the herb/supplement industry are just a bunch of benevolent souls making their products available for the good of mankind?0 -
lightsandwind,
I can't speak for anyone else but I never mind if people ask about or question what I do with respect to my tx and overall bc experience. I welcome it as a matter of fact because it helps me re-evaluate my choices, in case new findings or possibilities have come up. Hey, if you can show me evidence that what I'm doing is not working or downright harmful, I consider that a good thing. Just don't bring me anecdotes and old wives tales
0 -
"... How does all that feel to you? Polite? Do you feel safe to post about the plants growing in your yard and sharing your experiences about fighting cancer alternatively with us now? ..."
First of all, I would feel entirely "safe". This is a discussion board, on the internet and no one here really know who the hell I am, so, yes, I would feel safe. There's nothing that can be done to bring harm to me in this environment. I don't know you, you don't know me, there's no danger involved.
Secondly, I would never presume that I have all the answers to all the questions, that's why I'm here questioning. I don't want word-of-mouth or subjective experience; if someone makes a claim - on any of the boards - I want to see the proof. That doesn't change when I move from the conventional threads to the alternative ones. Why would it? Why would I use a different yardstick just because it's conventional or alternative? I don't want to follow any course of treatment unless I fully understand how it works, it's benefits, it's risks, it's long-term outcome. I don't care if it's tamoxifen or garlic; show me the proof.
Thirdly, why are you upset because we ask for substantiation? Why do you perceive it as badgering? When did the simple act of questioning become so threatening? When did discussion become subversive? When did asking someone to, perhaps, do some more checking become disrespectful? When did scrutinizing something to see if it really holds up become taboo?
As long as the questioning remains respectful, as long as it fosters discussion and brings out sources, and helps weed through all the misinformation out there about conventional as well as alternative treatments, then I am all for questioning. Long live questioning!
0 -
Thanks Selena, brnx and kayb for articulating my thoughts so well. I just want to add that this is a public message board. We are all free to post on any thread we want as long as we don't violate any board rules. Many alternative folks come onto conventional threads and bash our treatments. Others then respond with questions, support, or criticism. It's part of what being on an internet message board entails. If you can't take the heat get out of the fire.
Also, if those who favor alternative treatments were really confident and secure in their choices they would welcome well thought out critiques. It would give them a chance to debate and validate what they believe in. But it seems those who stand in the shadows of alternative medicine don't want the light to shine on their claims. I wonder why.
I absolutely do believe much of alternative therapy is dangerous quackery, designed to rip people off, while not caring a flip for the well being of victims being conned. I'm not saying this is always the case though. If, as others have stated alternative proponents can offer research based, not primarily anecdotal, evidence of a treatment's efficacy, awesome. Let us see it.0 -
Things like curcumin, iodine, msm and milk thistle, mushrooms are not owned. They are made by many manufacterers so the greed can't happen with many forms of alternative treatments , in the same way that is happening in a widespread fashion with patented drugs in corporate medicine. Though there are individuals out there selling single infared sauna treatments for $1000 ,which I agree, is fueling the greed factor, and I agree that both parties can prey on vulnerable people.
Exbrnx girl. Don't worry, I respect your choice to do whatever you choose with your own body. Since you are open to questions, i was wondering what kind of evidence you would need to see to use an alt tx? Whatever it is, many could argue that it is not enough evidence, right? If you are waiting for clinical trials for proof, then it seems there is nothing currently available in alternative medicine that you are really open too, correct?
I guess there are just as many people here who would rather use this forum to challenge alternatives than to use them or openly discuss them. Guess the forum should be renamed and I'll be on my way.
On a final note, I get that ambiguity scares people, and some want to wait for proof. Dying from the cumulative effects of chemo is what scares me. For me, if there is any possible way on this green earth that I can avoid it, I will.0 -
What do you suppose the profit is on each bottle of curcumin, iodine, MSM, etc? I find supplements, especially those from manufacturers that actually prove they contain what they say they do, very expensive0 -
My favourite treatment made from a plant is Taxotere
Yorkie - you hit it on the head with this:
Also, if those who favor alternative treatments were really confident and secure in their choices they would welcome well thought out critiques. It would give them a chance to debate and validate what they believe in. But it seems those who stand in the shadows of alternative medicine don't want the light to shine on their claims. I wonder why.
0 -
lightandwind,
Yes, you are correct in that there are no alternative tx, currently available, that I would use as a stand alone therapy. Evidence that would convince me otherwise would be clinical trials or large scale controlled studies, similar to the process conventional meds go through (though that is not perfect). And you are correct in that substances such as curcumin, milk thistle etc are not owned, however if there were standards for production, purity and dosing of these and similar substances, there could be trials as to their efficacy. Um, greed can indeed happen and it does.
Lightandwind, whether you continue to post here or not, I did want to say that I appreciate the tone of your posts which never sunk to the nasty mud slinging we've sometimes seen here. Although we may see eye to eye, we were always able to engage in civil discourse.0 -
Oh, we're looking for evidence? Maybe somebody could explain...
Why are there are no double blind placebo-controlled trials for the major chemotherapy agents? Thus, there is no good quality evidence for chemo since the placebo response can be higher than 50% in medicine. Chemo is only used because it had weak studies and became consensus-based.
Okay, what is the evidence for adjuvant radiation? Actually radiation post lumpectomy is well-studied. Only trouble is that it only keeps one out of ten from local recurrence, it does not extend life at all (from all causes, not just breast cancer).
What is the evidence for removing axillary nodes? Does it extend life? No evidence that it does, according to the Manual of Clinical Oncology.
But it's used for staging, right? Not so much. The tumor biology tests are so specific, the node status is a hangover from the old days. And node surgery pays well.
So, we have no quality evidence for what is called , "tried and true."
Of course, it would be rude to post this information on the boards where women are doing all of the above, don't you think? It would be rude to go to where women are trying to survive according to their best judgement and try to undermine their efforts. Lucky this is the alternative thread and we can discuss alternatives to the unproven.
Hugs to all.0 -
A well thought out critique? You guys just say the same thing over and over again. Things like, there's no proof. You need clinical trials for proof. People need to be protected from alternative medicine, so you shouldn't post that. Quakery schmakdery. It's all the same broken record. I'm not hearing anything new.
People who use alternatives have all left BCO, gone to others, because they are not here to have a constant ass whoopin for their choices from closed minded people. People who use alternatives (for whatever reasons they choose them) can never win this argument because there is no proof that several of you continually demand. There is no proof of safety. There is no proof of efficacy, no proof. You win.
So can you just accept that and let it be and understand and respect that the rest of us, don't need proof. We do our homework and make our own decisions, and don't need the ongoing, constant, repetitive onslaught. If you feel secure with chemo, then go for. I don't . I don't feel secure with any of it, it's cancer for heaven's sake, but I especially don't feel secure about chemo There are plenty of like minded people elsewhere. The others are right. There is not a safe place for alternatively minded folks here. Yorkie..I'm getting out of this kitchen.0 -
Well, I will say that although we do have an alternative forum on bco, these message boards are mainly conventional. Every message board has a a "personality", in my opinion, and just like with people, we are all drawn to different personalities. I enjoy civil debate but I agree, that if you want to be on a message board where alternative tx won't be questioned, this probably not the place. I'd also like to add that there is a good bit of debate on many of the other threads on bco. That's one of the things I like best about bco!0 -
Thx brnx girl. Good luck Selena w/ the plants in your yard.You never did share what they were. Guess you didn't feel safe.0 -
Not to speak for Selena but I can't imagine her not saying something because she didn't feel safe.0 -
Brnx - kinda got a chuckle out of that too....
I am very open to learning of anyone who has cured her breast cancer using only alternative medicine. While I have had all traditional medicines, I am most interested in complimentary, and that would include any alternative medicine which someone has experienced healing her breast cancer.0 -
light, it is late (where I am), but I am not the least bit opposed to alternative remedies. In fact, I am quite proud of having taught my onc about the benefits of probiotics.
I do think that asking questions, shedding light and discussing are always a good thing. My docs are not always fans of my approach either, but that is really too bad. Right now and for the last six months, I am giving my onc a workout over osteoporosis drugs. I am not keen, and he is, so I am making him sweat. For now I am sticking to weights, diet and yoga. I think those count as alternative, at least as far as the docs are concerned.0 -
lightandwind & jojo68 - I've got your back on this one for sure. Seems there's much less support then one is lead to believe is here. "Either go MY way or you're an idiot" seems to be the theme here. Very disgusting for women that are turning here in a time of need - the other women that make jokes and seem to gang up. So very sad.0 -
Im relatively new to the boards. I have completed mainstream treatment. I complemented this with supplements that I researched and my doc agreed were safe. I am interest in alternative medicine, i am interested in anything that may have an effect on my life.
I have a science background. There are a few things that i find disturbing in regards to what i will call the alternative folk.
First as everyone else has said.. evidence based is a must for me and i get it may not be important for everyone. But i have a real problem with people advising others when they do not have the slightest understanding of the finer details or lets say biochemistry involved or even basic stuff . The comment about not double blind trials for chemo.. highlights a lack of understanding of the finer details involved in research also..but i will give you a hint.. think ethics.
What also worries me it many on here are taking a mountain load and then some of so called natural products or herbs... seemingly based on reading that such and such does this and such and such does that. Is there any thought given to how the many natural products are interacting with each other.. you know just like prescription medicine.will with each other or with a natural product.
It also frustrates me and amuses me when the big pharma and the doc being paid to give chemo etc etc.. there is life and medical practice outside of the USA .. where there is no financial incentive for docs to recommend certain treatments yet they still do
You believe stuff from someone who barely know the difference between a white blood cell and a red cell yet distrust or dont believe something from someone who has spent years studying this stuff.it just doesnt make any rational sense to me.
The scare mongering in regards to chemo and rads etc.. all the nasty side effects are thrown about without the stats being put into perspective. Take tamoxifen for instance and endometrial cancer.. its is extremely rare for tamoxifen to cause this yet its thrown about here like its 8 out of 10 women will get endometrial cancer.
And mostly it saddens me when i see women on here spend a fortune on alternative stuff and forgoing traditional treatment out of fear and lack of understanding.. and alternative stuff seems so much easy to understand.. with traditional medicine its like there is almost too much information out there that the average person does not have the background to understand so its too overwhelming. It saddens me to see women denying themselves treatment that may save there lives for a herbs or seed that comes from china thats really a bunch of spices or dirt.. have you seen the lastest to come out of Asia in regards to spices and have is actually in it..
I respect decision i really do... but there are good and bad decisions and its hard to watch what you know is a bad one happening0 -
I'll just add one thing to this discussion.
lightandwind, you said:
"People are already smart enough to know that herbs and other substances aren't regulated and they have not been tested to ensure their safety, and can be hazardous in certain quantities. That is common sense."
Unfortunately, common sense is not so common. And what is common sense to one person is not necessarily common sense to another. I shudder at some of the things I've seen people do, and yet they don't for a second think that they are putting themselves at risk. The way that some people over-use and abuse herbs and other substances is truly scary.
That's why I believe that regulations and labelling and industry standards and testing are so important for 'natural' products. Because we can't afford to leave it to the individual's common sense.0 -
I've been reading this thread looking for not only what people are doing but why. I'm almost exactly one year post dx, and want to move forward in the safest, healthiest manner available. I've spent many, many years eating, not eating, and doing, all the right things, well most of them, and still managed to develop breast cancer. I do think and hope my healthy behaviors might have slowed the growth of my tumor, and am convinced that the miserable stresses I've had to deal with the two or three years before diagnosis were definite culprits. I seriously want to educate myself on alternatives.
I've done, and am doing, the scientifically proved treatment. Scientific studies prove that radiation and arimidex have reduced my personal chance of recurrence from about 40% to about 7%. That proven advantage is not something I could have ever, ever turned away from. I am extremely grateful that chemo was not recommended for me, as it would have reduced my chance of recurrence by only 2%. The side effects were not worth the dangers. Moreover, current research seems to indicate that starting chemo later rather than sooner does not significantly impact survival. Curious, suspicious, surprising. Also comforting, both for myself and those of you involved in your own personal alternatives-only research.
What I hope for from this thread is research. Please do not discuss patents, as there is a way around that. For crying out loud--how many individual potato products are in your grocery store? Scientists want to find a cure, and if there is a substance that shows real promise, funding will appear. Not only pharmacologicol companies, but hospitals, charities, foundations, and private donors want to find the cure. If the cure is going to appear on grocery store shelves, in the fresh, canned, frozen, and prepared sections, don't you think Green Giant and all the rest would be fighting to develop and market their products? And find farmers? And build new factories to support more workers?
This is a long way of asking for those of you who are going the alternative way to please post the studies that have you convinced, read the scientific stuff before you turn your back on it, and please keep in touch--narrative studies are often the basis for moving something from and old wives tale to a scientifically studied and proved remedy.
0 -
Beesie, I am also concerned when things that are completely wrong are stated as fact.0 -
Lightandwind...
I do not mind sharing what I grow in my garden at all... I have Golden Rod: a tisane made from the leaves is good for treating mild cystitis. For me, it works well with cranberries if I catch the cystitis in its early stages before it has a chance to really take hold. Once it takes hold, there is no way in hell it will help, so I go to see my doctor for macrodantin which works much better. No there is no clinical trial to speak of, but I would never, ever tell anyone to do this without being properly diagnosed by their doctor, especially if they have never had a UTI. That is why I have never shared it; not because I do not feel safe, as you call it.
I grow several variants of thyme; it is a good culinary herb and makes a nice tisane. When concentrated into an oil, it can - not always - help relieve a mild cough. Thyme is an ingredient in many OTC cough remedies, as well. No there is no clinical trial to speak of and, again, I would never advise anyone to use this if they have a heavy cold, pneumonia or influenza. Go to your doctor if you are not sure.
I have two types of chamomile, as well as valerian - beautiful plants that make soothing- and calming teas.
I have foxglove, which I grow for its beauty and lilies-of-the-valley and, although curiosity has lead me to research how they are used in pharmaceuticals, I would never, ever presume to prescribe or advise anyone to use these plants on their own without proper guidance from someone who is licensed and knows what the hell they are doing.
Lets see, what else.... plaintain for bee-stings and other insect bites; calendula- and marshmallow for dry skin; catnip and black peppermint for digestive upset. However, again, I would never advise anyone to do this in place of proper medical treatment, if needed. Catnip tea will not save you if you have a bleeding ulcer. And, although I grow highly toxic plants as well - foxglove, aconite, comfrey, rue - I grow them because they are beautiful and for no other reason.
I have basil, Italian- and curly parsley, sage, garlic- and regular chives, common- and greek oregano, and garlic for cooking. Nasturtium, sage, sweet woodruff, oregano and chive flowers are all edible and make wonderful garnishes. Sweet woodruff, especially, with its light, sweet flavour and delicate flower is wonderful when floating in a glass of chilled, white wine.
And all my herbs have magickal purposes, as well, but my spiritual beliefs are mine and I am not going to share them. That is my right; it has nothing to do with safety and everything to do with fact that I am a private person. (Posting on an internet discussion board under an assumed username preserves that privacy.)
Just so that I am very clear. I have never mentioned my garden on these boards because I respect the plants I grow and use. Not everyone has the background that I do in the pharmaceutical industry and not everyone understands the benefits, dangers and interactions of using botanicals. Many people take many years to study them before they understand what they are doing. I would never share how I use them because I AM NOT AN EXPERT. It would be highly irresponsible for me to do so and I would never do it. I WOULD NEVER dispense my knowledge in exchange for money because that goes against my personal and spiritual ethics. I am only posting this because, for some reason, you are trying to use this as an issue that I would feel unsafe if I opened it to scrutiny. I emphasize again: I do not feel unsafe. I AM BEING RESPONSIBLE.
Mother Earth is a wonderful, living, sacred organism. I believe Her gifts to us MUST BE approached with reverence, respect and understanding. Plants are life-giving and life-taking things. They must be approached carefully, knowledgably, responsibly and ethically.
0 -
lightandwind you said:
I believe that several substances could possibly help- to name a few, goji artemisinin, iodine, curcumin, DIM, grapeseed extract and medicinal mushrooms. Am I an expert? Nope. But I know how to read. and I take up a whole lot of time doing it, and I could share my own experience, in a safe non-judgemental atmosphere, if I had one.
"I believe" "could possibly" aren't enough for most of us. Is it just my perception or is every alt person "figuring out" their own treatment with "mountains of research". If you go conventional they give you options but within those options there are very definite dosages/intervals etc etc for each drug therapy. There doesn't seem to be any "protocol" for anyone doing alt. I always read "this is what IM doing". I guess this is my biggest frustration
is there a protocol that someone can share that has been used/tried/studied to TREAT a cancer diagnosis or to PREVENT a reaccurance?????0 -
I gotta say, SelenaWolf, I would love to see your garden! It sounds amazing. And your knowledge of plants/herbs is impressive. I wish I had your gardening skills (only plant-and-leave perennials are safe with me). I do think you are right, that most plants that have the power to affect you physiologically, can hurt you as easily as help you, if not used correctly. A little bit of knowledge can be a dangerous thing. And I see that as the point some of you have been making, that it doesn't help people to just look at the potential upside of alternative therapies if there are possible dangers involved, as well. Really, the best approach is to try and look at both conventional and alternative treatments rigorously. Although, I also don't think we can discount everything that hasn't had a double-blind placebo-controlled clinical trial.0 -
Fallleaves... you`re right. Many old wives tales have become conventional treatments: willow bark tea to treat headaches and aches-and-pains contains ASA and lead to the development of aspirin. Foxglove tea for heart issues lead to the discovery and use of digitoxin for atrial fibrillation. Sunflower oil was used in Russia as a treatment for bronchial troubles. Clinical research discovered that sunflower oil contains insulin, which has proven to be an effective treatment for asthma. Some alternative treatments do stand up under the weight of scientific research.
These are the things that I am interested in. The alternatives, the old wives tales and traditional medicines, that prove themselves.0 -
just an aside - for me, there is nothing more beautiful than a white foxglove - I've only managed to have one grow a few times in my life and then they are the Queen of the Garden - and very pretty near what looks to be some sapphire-blue borage in your photo0 -
Rozem, many of us share your frustration and puzzlement with some of what is posted here, but it is not considered good form to voice it.
In the beginning, after my DX, I was all fired up to find any and all supplements that might do something to protect against the stupid cancer. Most things I found turned out, upon further investigation, to have either a flimsy basis and/or unwanted SEs or effects, but there were some exceptions.
Turmeric/curcumin is one of the things that is being seriously investigated. It is mainly thought to be anti-inflammatory, but may also have some more direct anti-cancer action going on. I have not been able to find any evidence that it is harmful in any way.
Vegetables in the cabbage and onion families may have some beneficial effects. Again, it can't harm you and may also help overall health generally.
Mushrooms, as above.
Keeping blood sugar low and stable. Again, there is no definitive "proof," but there are suggestions that it may be a good idea. For me it means that I rarely eat sweets, limit fruit and limit white carbs. As with the rest of this list, it can't hurt and may help, so I figure why not.
Exercise. There are several studies strongly suggesting a protective effect from exercise. As with the other things I mentioned, you can't really lose with exercise. It will help your heart and overall health and if it helps against the cancer too, all the better.
Staying lean. It could be because lean people have less estrogen, less insulin, less cholesterol or all of the above. So far nobody quite knows, but there are strong suggestions that staying lean could be an advantage.0 -
Selena- jealous of your lovely garden. I used to live in a big house with a big yard and had a lovely garden. My favs were lavender and rosemary. I have a tiny patio now but try to make the most of a raised bed and things in pots.
Rozem- I agree with your post but I've concluded that there are some proponents of alternative therapies who don't feel that evidence based conclusions are important or even desirable. I can accept many things on faith, but if I'm looking to help my body fight a serious disease, I need more than faith and anecdotes before I swallow something.
This may be a strange, and possibly erroneous analogy, but it reminds me of music fans who are proud that they knew a band when they were obscure unknowns. When the band becomes successful, more widely accepted or "gasp" evolves musically, they say the band has sold out or claim that their old stuff was better, more authentic etc. Hmmmm, really getting off on a tangent now.0 -
thanks for the suggestions momine - how are you taking the turmeric (pill form etc)? how often? I exercise and try to eat properly most of the time but I do indulge in sweets occasionally which now Im feeling guilty about. I love fruit, isn't fruit ok since its a natural form of sugar?
exbrnxgrl - your analogy is right on!0 -
Rozem, my approach may be a bit extreme. My blood sugar (fasting) was hovering in the high 90s at DX, through treatment and for a while after. I got sort of stubborn about getting it down.
However, it doesn't matter if sugar is natural, refined, honey or maple. Some sugars take a bit longer for the body to break down, and fruit has fiber which will also slow the glucose down some. But the bottom line is that just as you don't want to eat a pile of donuts you also don't want to eat 2 lbs of peaches in a sitting. Both of those will cause you to have a spike in blood sugar, which as far as I can understand is better avoided. I do eat some fruit, but usually stick to green apples and berries. I often eat the apple with some nut butter and cinnamon. But obviously the overall nutritional benefit of 2 lbs of peaches is still way better than that of a pile of donuts. I have also noticed that after cleaning most sugar and refined carbs from my diet, it makes me feel really strange if I eat a lot of either, which does happen on rare occasions.
Turmeric can be bought in capsules.0 -
I take Jarrow Formulas Curcumin 95 (500 mg of turmeric concentrate). Good price on Amazon.com0
