Interesting article for those contemplating alternative
A very reasoned and interesting article on alternative therapy
http://www.theguardian.com/commentisfree/2015/mar/...
Comments
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"This forum is a safe, judgement-free place for Alternative Therapy users and for those wishing to learn about alternative therapy only."
This article is neither balanced nor thoughtful, just one doctor slamming all alternative therapies in a general kind of way we've all heard 1000 times from those with no interest in or use for alternative therapies. As if those who follow mainstream medical advice are always cured and are never bankrupted by their treatments! Please!
Why would you post something like this on a forum that is to be a safe and judgement free place for Alternative Therapy users?
Geez!
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so its safe so assume the survival rate of this oncologist's patients not doing the alternative therapy is close to 60%+. and he didn't take the commission of prescribing chemo to his patients.
what part of it sounds reasoned and interesting? the fact that someone died?
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My apologies but I did not know that "safe and judgement free" meant that you cannot present an article for evaluation. I figured that the people on this board are intelligent enough to read something and come to their own conclusions, whether pro or con.
As a person who has done chemo, and who is "wishing to learn about alternative therapy" (as also stated in the description of this forum), I thought that this was the place to come for discussion of said therapy. Apparently not. Seems that unless you wholeheartedly and blindly accept alternative therapies without questioning anything, you are not welcome here.
And I beg to differ, but it is a very balanced article because the writer does admit:
"Many people will counter that the experience of chemotherapy is no less daunting, destructive, and even fatal. I agree."
She goes on to say
"The difference, I believe, is that there is openly available literature from reputable sources that will tell you this. Chemotherapy recipients are increasingly provided with information and education, not to mention monitoring of toxicity."
In other words, "traditional" medicine and its practitioners are held to rigorous standards of research, implementation, efficacy, transparency etc. You know what you're getting when you sign up. Most, if not all, alternative therapies and practitioners are not subject to any oversight at all. They make whatever claims they want, without years of peer-reviewed data or analysis to back up their claims. Many alternative products don't even contain the ingredients they claim. And because there is NO OVERSIGHT for the alternative industry, no FDA-like entity, no board certification required, consumers can never be sure of (a) how reputable or experienced the practitioner is (b) what they are getting (c) how it will affect them.
I thought it was extremely reasonable of her to say:
"This is not a reason to excuse the former (traditional) but to regulate the latter (alternative)...... It is conceivable that some worthwhile measures are tainted by the same brush as a lot of fraudulent ones"
How is asking for the regulation of an industry that claims to have cancer cures, and are TREATING PEOPLE for cancer, be "slamming" that industry?
This article drove home for me the fact that with alternatives, you really have no idea what you're ingesting, how it will work, what the dangers are, how many people it has or has not helped etc etc etc etc ...because, again, the industry is not held to any standards or oversight that protects the user. Caveat emptor indeed.
If this FACT amounts to "slamming" alternatives, and shattering your "safe and judgement free" bubble, I sincerely apologise.
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Deblc - I appreciated the article and found it interesting. And the cold, hard facts are so many products are unregulated and we pay a lot of money for things that aren't what they say they are.
My beloved father was diagnosed with Stage IV pancreatic cancer at a very young 65. He chose to forego any chemo or radiation and we did alternative treatments from coffee enemas, wheat grass, massage therapy, vitamins and supplements, Essiac Tea, alkaline/acid, went to alternative doctors out of town- and any other number of things we could find. He was willing to try anything and everything, but no chemo. He died within 4 months, but we gave it our best shot because it was his wishes and the best choice for him.
When I was diagnosed with Stage 3a breast cancer, one lymph node shy of 3c, I was thrilled (using that term loosely) to have traditional medicine and never hesitated for a moment. But while I was going through the rigors of chemotherapy, often my dad came to mind. I was grateful he chose not to do chemo because he hated medicine and hated being sick - and my big, strong father would have probably quit chemo after one infusion. But I knew for me, it was the best choice. Three years later, I still know it was the best choice for me.
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Denise, my condolences on your Dad, I totally understand why he would forego chemo and I battled with that decision myself. I wish to God there was a PROVEN non-toxic, natural "cure" and I have haunted a lot of alternative boards looking for proof that there is one. We all know chemo is no guarantee and have to weigh whether the treatment is worth that shot. My only intention here was to share an article that I thought made a very valid point about the uncertainty of alternative treatment, as I, for one, do not want to make a life or death decision based on therapies that are not even regulated, much less proven. Not "slamming" anyone else who wants to make that choice at all.
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You were able to post it, I read it and IMO it was not a balanced or thoughtful article, but biased in the extreme. I certainly haven't blindly and wholeheartedly accepted alternative therapies, having had both surgery and radiation, nor have I found traditional practitioners of medicine to be particularly honest or transparent, instead they down play the effects of their prescribed treatments regularly. Many of us (including myself) were told radiation will be like a sunburn (that's what my RO told me-not true) and questions about damage to heart and lungs were downplayed. My OC told me the potential benefits of tamoxifen outweigh the possible side effects, but sure didn't explain those side effects well or in detail. Time and time we read of doctors saying no, the rads or chemo or tamoxifen doesn't cause this or that, but if you look it up, yes, there it is. For example, several persons here have been told by their doctors that tamoxifen does not cause benign ovarian cysts, but if you look up the side effects of tamoxifen, it certainly does.
Buyer beware, and do your own research applies not only to alternative but to traditional medicine as well. This article was all about slamming alternative medicine. There was no other point of view explored and since it implied people are not bankrupted by traditional medicine (and they are) or that people are not harmed by traditional medical care ( thousands of people die every year due to medical errors) but are harmed only by alternatives I didn't find it very factual either. If you think this is a balanced article, you are entitled to that opinion, but I don't think you should be too surprised that someone else might read it and detect more than a hint of bias in this article that I don't see as being about or exploring alternative therapies. It is an article clearly against the use of use alternative therapies.
Under "Who Should Use this Forum and Important Links" it says you should refrain "from using this forum to voice opposition to this alternative treatment." I think this might also mean your should refrain from posting links to articles that clearly voice opposition to alternative treatments. This is the only board on this site where those interested in and actively using alternative treatments might feel safe and supported without having their intellect and choices picked apart.
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Oh I'm sorry, did not see where it says you can't voice opposition. Only saw where it says it is a place to "discuss" alternative. I guess the definition of "discuss" in this forum differs from the dictionary. Before I ask the Mods to delete this post, let me just voice my opinion, if it is allowed, that it is very harmful to have a forum where the pros and cons of a cancer treatment on a cancer board cannot be thoroughly "discussed" .
Mods, please delete my original post as you see fit.
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Hi sisters,
What's going on? I read the article and didn't think there was anything wrong with Debic posting it here. I consider myself a very open loving person. Why all the hate? Please don't stop Debic because I'm glad I got a chance to read it and learn. I really can't understand why some others are offended by it being posted in this section especially because it relates to Alternate Medicine. When somebody is researching their options they need to see and hear every side. That's why I go onto this website, to do my research. I don't wanna just read and hear what I wish or hope to hear. I wanna hear it all so I may be able to decide for myself what is right for me. I hope you guys understand what I mean
Hugs to you all...
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Giazuc, thanks for the support. I feel exactly as you do, that this is a website where we learn by open discussion. This seems to be the only forum where we have to pussyfoot around topics for fear of offending people. I really do not agree with this approach, but that's the mods' decision. I am not posting things to be contentious and I am sorry if I sound peeved, but I really am, because I think it is really harmful not to be able to question ANYTHING related to cancer on a cancer board. We don't have this problem on the other forums, why the special treatment here?
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JMHO, but there are no problems on other forums because people doing alternatives don't generally go on to conventional threads discussing their treatments. I've never seen a post from a contributor to the alternative threads disparaging conventional treatments on a conventional thread (well maybe once or twice, but they clearly had other issues). I don't understand the need to come to this forum to disparage alternatives. I've asked numerous times why it's ok, when we all know if one of us came on to a conventional thread, we'd end up in a shark tank, but no one seems to want to answer my question. Deb, I can say you're not one of the group that usually comes on here just to stir shit up (and yes, we are smart enough to know the difference), so if this post isn't taken the wrong way, maybe you could explain the double standard, because it truly is beyond me.
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Oops...sorry. Hit submit twice.
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Leggo, in my case, I thought that this forum is to DISCUSS alternative treatments, whatever the position may be. I don't see anything wrong with that. I would certainly have no problem with a person posting on a chemo thread to say, I did not do chemo because of whatever reason, I think it's dangerous to do it, I've survived umpteen years without it etc etc etc. In fact, I would welcome hearing a story like that. And I'm sure people have posted before about how toxic chemo is, and why they didn't do it. Everyone's opinion is valid, if done in a respectful way. And everyone can agree or not. And then a discussion can ensue. That's how we learn. Why can't this be acceptable on the alternative thread?
I did not post this article thinking that it "disparaged" alternative treatments. I thought that it was a very valid argument to be wary when using alternatives, due to the FACT that alternatives are not regulated in any way. I mean, I knew vaguely that it is pretty all anecdotal but this article struck a chord with me because the writer was NOT totally biased. She admitted that chemo is literally no cure-all, that it is toxic. Her point was that at least "traditional" medicine is regulated, you have government oversight, you cannot just prescribe stuff that has not been tested and the efficacy evaluated a million times over; that regulation would enormously help alternative treatments to be more accepted by mainstream doctors, and weed out the fraudulent practitioners. WHAT IS DISPARAGING ABOUT THAT???
The fact that it is so unregulated, that any quack can make any claim, and that many supplements have been found to NOT even have the ingredients that they are purported to have, seemed to me to be a hugely important fact to people who might be considering alternatives. I come on this board to be educated, and I thought I was educating other people by sharing this information.
Why is is a "double standard" for me to post on the alternative forum, if I have done chemo. I am interested in doing alternative treatment and am trying to learn about it. If I read an article that says that some popular alternative treatment is dangerous, should I then not post it on the alternative forum, because I did chemo?
I posted this article in the same spirit of passing on information that I thought was helpful and worthwhile.
I do not understand why everyone on this forum is so defensive. It is such a knee-jerk reaction that anything questioning alternative therapy is deemed as an attack. I do not understand why there is an admonishment that no opposing view can be posted here. It is beyond me why everyone would not want to have as much information as possible, whether for or against, regarding a treatment they are doing. But I guess that's just me.
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I think this thread is aptly titled "For those contemplating... " Although I am doing conventional tx, I sometimes wonder about alternative and this article brought to light somethings I should consider if I were to chose this route. I don't think the intention was to bash anyone already doing alternative.
I feel anyone, alternatives included, can pop over to the other threads if you have insights to share. The difference is I don't think you are going to tell me anything I haven't already her from my tradtional doctors. They have fully disclosed that what they are offering may make me sick as hell and still not cure me. I'm not sure that those promoting the alternatives are as up front about the possible negatives.
I think there is room for both conventional and alternative medicine, but lets recognize thet both have successes and failures, positives and negatives.
What I think is unfortunet is when people turn down tradtional tx based solely on fear, shunning tx because they were told both the good and the bad .The laundry list of SE that comes attached to every drug perscription is horrifying. Many who could probably tolerate a beneficial drug that is paid for by insurance are too scared to take it and pay out of pocket for something alternative that appears safer only because that pill wasn't required to list the SE's. I think boyh types of treatments should be regulated in the same way so that the consumer can compare apples to apples.
If your practioneer, either traditional or alternative, isn't willing to present both the good and the bad the imo, iys time to find a new practioneer.
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let's face it, we're all responsible for our own health. We can choose our treatments and we can talk about them openly and share our experiences.
The article author was obviously despairing of a patient who was not listening and was headed for treatment that he thought inappropriate.
When I read that article I sent it to people who, one year ago when I was diagnosed, wanted me to go the alternative route for my treatment. One responded that alternative treatment had worked for them. Fair enough. But for my case, I soon worked out that I needed the full monty big pharma treatment for my BC and it worked, so I'm happy.
So let's all chill out, take or leave what advice we want to, and only time will tell whether we've individually made the right decision or not.
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Denise, I am sorry about your dad. Also though, with stage IV pancreatic cancer, the chances that chemo will do much good are extremely slim. It may not even delay the inevitable by much. Under the circumstances, your dad's choice was entirely reasonable.
Deblc, no, it is not allowed to post anything in this forum that in any way questions or criticizes alternatives, according to some. I thought the article brought up some important points, as you highlighted in your follow-up post.
In general, the story of Denise's dad highlights for me the simple fact that chemo is not appropriate for everyone. On the "low" end, i.e. stages 0-2a, it may well be overkill, which is why we now thankfully have the oncotype DX. At the advanced stage, i.e. stage IV, it also may not be appropriate to hit the cancer with chemo as a first defense. However, for those of us who are stages 2b-3c, chemo is usually an important contributor to our continued survival.
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What is "alternative" tx for cancer? Not doing the toxic and poisonous chemo and opting to protect your immune system? working to improve immune function? Changing your diet to enhance your general health? taking supplements to help with nutrients we are lacking? Avoiding envior toxins? Staying active? Limiting sugars? Avoiding stress? etc. Well then we are all guilty of alternative tx. Chemo is by no means a cure all for most of us. Obviously...It may even cause our cancers to become resistant to future tx and really effect the quality of the rest of our lives. We are in this together, Conventional tx or "alternative".
xoxMaureen
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I just wanted to add something, and then I am going to stop beating this horse. I come on this board to be educated (second to bitching and complaining about what God did to me of course) and that includes asking questions and trying to think critically. Trust me, the latter is very difficult after chemo. Hey look, I just disparaged chemo !!!!!
How can we learn about/make a decision on alternative, if we are not allowed to ask or say anything that might be "opposing" it? Imagine going on a chemo forum and being lambasted for bashing chemo. Hell, every one of us wouldn't be able to post anything. Where do I go on this board then to TRULY find out what the deal is on alternative?
My point being, if stating a fact is considered "slamming", or if an entire forum has to be protected against scrutiny to maintain a "safe and judgement free" environment, how is that helping anyone? Isn't that totally going against the purpose of this website?
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Oops...very last thing:
To. Traveltext: I would be very interested in hearing the story of the person who said alternative worked for them. If that is possible, can you PM me and let me know if they would be willing to email me about their experience? Thanks.
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in my opinion if you already fully endorse alternative treatments that article won't influence you, if you fully endorse traditional treatments that article won't influence you either. Most importantly if you are investigating all types of treatments the article will give you information on which to do further research. The author has done her job and got us all talking and reinforced that we should never go into something so life altering without investigating it. I am relieved that this forum promotes the exchange of information.
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"in my opinion if you already fully endorse alternative treatments that article won't influence you, if you fully endorse traditional treatments that article won't influence you either".
Nicky, for some reason my smileys are missing, but thumbs up!
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Canadian researchers found that of the 44 bottles of herbs they tested, a full third were outright substitutions – the plant advertised on the bottle was simply not there. Genetic fingerprinting reveals that many popular supplements are filled with powdered rice and weeds. The World Health Organisation calls this a threat to consumer safety.
Deb: thank you for this article. I found it well-written. The above paragraph, in my opinion, is a really important take home point. I have read other studies about this,,, herbs are not what they are advertised to me. Please my friends, if you are taking herbal products and other supplements, be sure you are buying from a very reputable source, and are getting what you are paying for. These substitutions happen quite often with products coming from China, but be aware, they are not the only place.
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To make matters worse, her mother also died because she chose alternative treatment for her breast cancer
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SusieQ, I am sure the alternative supporters' response to this article will be that people also die after doing chemo. Which no one disputes. My concern is that, when things like this happen with alternative, is a reputable body really tracking and documenting the success rates, the survival rates etc etc etc etc. of any particular treatment, as is done with chemo.
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Well I had chemo and I'm alive 5 years later but I bet I'd be dead if I hadn't done conventional treatment.
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I just wish there were studies that tracked this
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very interesting thread, Deb, I read everything except the article, my laptop is malfunctioning & I'm currently unable to read the links. I want to comment on "regulations", if alternatives were 'regulated", I put that word in quotes because I expect most regulators of conventional therapies are biased in favor of their own chemicals, if alternatives were regulated in such ways they would also be subjected to such biases, also most if only many would disappear. we would not be able to use herbs or essential oils for instance because no one would take the time/money to test substances which can't be patented. & the expenses would be prohibitive anyway. I'm going on 5 years from my first notice of bad trouble (depending on how you count), with only alternative. It's for pretty sure going to kill me, but apparently quite slowly & with no troubles that have so far stopped my regular life. no time in drs offices, no infusions, no pills or tablets,
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Abigail, "regulation" in this context is not about testing for efficacy and side effects. It is only about checking that the supplements actually contain what they claim to contain. There were some big cases recently where supplements were found to contain little or nothing of what was listed on the label.
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