Is it possible to post negative Alt experience?

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  • rosemary-b
    rosemary-b Member Posts: 2,006
    edited February 2012

    My doctor just gave me a cholesterol lowering diet plan. I have had nutrition counseling sessions from dieticians arranged both by my cardiologist and my oncologist. In all of those cases I was told which foods to eat and which to avoid.While their diet recommendaions may differ from those of alternative practitioners they all provided information on diet that they thought would improve my health. I thought that was common practice.

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    rosemary-b:  Sorry, but that wasn't my experience.  Wish it could have been more positive.

  • rosemary-b
    rosemary-b Member Posts: 2,006
    edited February 2012

    I am sorry too Kaara. I am also surprised. I don't exactly live in an area that is a hotbed of advanced thinking.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited February 2012

    I've seen Drs' attitudes towards nutrition and exercise changing (for the better!) over the last few years.  In fact, whenever there is something unusual in my bloodwork, the first thing we discuss is "what have you been eating lately?" and then it's "Well, I think you should avoid that, and eat more of this".  This goes for our PCP, DH's cardiologist and my oncologist.  The supplements we take are all on record.  I've had great discussions about the value of aged garlic vs statins, and the doc can see for himself that it works for me.  I suspect he tells other patients about it.  His Nurse Practitioner is also a certified nutritionist, so she keeps him advised!

    I do hope, though, that medical schools are giving much greater attention to nutrition than they have in the past.  Who said "We are what we eat"?

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    I'm hesitant to jump in on this thread, but here I go.  I  have found doctors to be very dismissive of the idea that diet can influence cancer, which is what Kaara is saying.  Of course, they urge to "eat healthy," but their idea of eating heathfully includes stuff like dairy and meat, which many anti-cancer diets exclude.  When I was diagnosed, I was told, "Eat whatever you want."  When I asked to see the dietician at my hospital, I got 10 minutes of crappy advice.  I had already learned more than that on BCO!  My second opinion MO said she got one day of nutrition in med school.  

    I think of diet like a seat belt.  A seat belt can't always prevent injury or death, but it certainly helps!  Since I always, always wear a seat belt, even when I am driving across the parking lot, I figure the anti-cancer diet is a no-brainer.   

  • Titan
    Titan Member Posts: 2,956
    edited February 2012

    Agree with  alot of you ladies..after I was diagnosed I was told I needed to be healthy to handle the chemo..so I started walking..man that was hard..I was proud to do a couple of laps around the track..3 years later.today.I jogged 4 miles (not bragging..it took me that long to work up to it)..I also would walk around with a bag  of spinach instead of chips..just eating it out of the bag..I take several vitamins too.

    Not sure if it helps against reocurrence..but you know..I just feel better..who wouldn't feel better eating a healthy diet rather than a huge burger with fries?

    Three years later I'm trying hard to not slide back into the b-4 diagnosis lifestyle...I remember thinking (and exercise is proven to be great for triple negs)...that I will have to exercise diligently for the rest of my life... I see runners in their late 50's and 60's that have a runner's body..I want one of those...!

    I still think reoccurence is a crap shoot..too many times on here there are people that never ever did anything at all and still got breast cancer and possibly progressed...

    I dunno...I think that you have to do what feels right for you...I still have some bad habits..but mostly good habits.

    I certainly wish that there was SOMETHING proven that we could do to help ourselves...Vit D3 is huge now..I take tons of it...that is something that has been found to be low in BC patients...plus taking it seems to give me alot of energy...I like it.

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited February 2012

    Titan-

    You have a great attitude about changing up your lifestyle to help yourself.Though we all know disease can strike even the most health-conscious of people, we really owe it to ourselves, to our life partners, and our children to make the most of the health that we possess.

    My body is my temple, and I treat it as such.

    Since we do not always have the answers, we reach for the things that we think are best for us in times of need. I've noticed that some people distinctly reach for the stars when they are diagnosed---they partake in more activities, live a lot harder, love a lot harder, and simply make the most out of every meal, morsel and activity they partake in.  I like to see that. I think positive thinking keeps us out of the sh*ttiness of this world. Cynicism? Yeah, I used to have it. Maybe I still do, but am adopting a positive outlook. I work on it every single day.  

    I applaud you that do great things to better your health. I applaud those of you who have had to endure the discomfort of surgery and treatment.  Some of it works, some of it doesn't. But don't we always talk about choice?  As a nation (USA), we talk about how important it is to have "choice".

    But we are distinctly uncomfortable when it comes to people actually choosing other choices. It's all rooted in fear. Well, maybe some of it is rooted in a sense of "what's in it for me", but mostly fear.  

  • apple
    apple Member Posts: 7,799
    edited February 2012
    thenewme:  "

    I share your frustration. IMO, this is the only forum where anyone can make any kind of claims and state them as fact, and any evidence to the contrary (or even respectful questions) is blatantly unwelcome.

    It's the only forum where "discussion" is completely one-sided.  Anyone offering input or questions from a different perspective is quickly branded a troll and a bully "attacking."  

    It's the only forum where factually-incorrect information, unsubstantiated claims, and conspiracy theories abound.  It's an altered reality here where you can make up stuff and cherry-pick research and cite completely bogus sources, and when questioned, you can dodge the questions, cry "bully," change the subject, or any of the other common responses.  

    It's the only forum where it's pretty transparent that some posters come here for motives other than sharing legitimate breast cancer treatment information.  These include political/advocacy motivations, business prospecting, website marketing, and who-knows-what other kind of issues bring people here.  

    Of course I realize that I'm one of the "unwelcome ones" here on this forum, but I hold to the belief that misinformation is a terrible disservice to legitimate breast cancer patients, so I try to present a more evidence-based perspective.  I'm not out to tell anyone what they should or should not do as far as their own treatment choices, but when I see blatant misinformation, it bothers me.  I don't understand why some posters would feel so threatened by facts and discussion."

     that was well said thenewme.. I guess I am an unwelcome one too.  Not only have i gotten negative private messages, but not once.. NOT EVEN ONCE.. has anyone in this corner of BCO said anything encouraging, loving, commisserating or sympathetic. I realize I am stage 4 and not a poster girl for alternative treatments that 'work' in stage 0 or stage 1 patients.. but geez, I do employ alternative treatments and do share what works for me. an occasional 'u go girl' would give me pause to smile.

    I am not asking for a pat on the back, a thumbs up, wishes for encouragement, etc.. but -  there is a coldness here that is numbing.   

    maybe that's a good thing.. it keeps me from coming here too often.and seek less commercial sites for sharing alternative health tips and ways. .. which is really too bad because there is a wealth of helpful info that should be freely shared and not 'protected' in a way.  I guess you have to stand on the other side of the road to understand this.

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    Apple:  I hear what you're saying, and I'm sorry if I didn't show more sympathy to your stage of bc.  It's a little difficult sometimes to know if someone wants that, particularly when they are posting on a thread in a heated battle over a particular issue.

     I think if you were to share with us something personal, or a challenge you are dealing with, many would jump to console you and offer comfort, just as we do on countless other threads.  Any one of us who is stage 0 or stage 1 today can easily become stage 4 tomorrow...no person is immune from that.

    You are as welcome on this thread as anyone else, and we all have a responsibility to keep our discussions free of animosity.  That doesn't mean we can't agree to disagree. 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    I'd like to chime in - I'm always glad to see the Stage IV girls on the Alt Forum - I have known Stage IV women who have had a lot of success with a combination of Alt and conv, so I think it is great that you are interested in Alt stuff.  I always try to share what I have seen work for early and advanced stage ladies.  

    I'm sorry you feel that this Forum is cold - that bums me out.  There are definitely lots of arguments on this Forum, more so than any other Forum and I wonder if that makes everyone automatically put up walls and not necessarily reach out they way they do in other sections of BCO.  

    For what it's worth, you are actually one of my favorite posters.   

  • Ang7
    Ang7 Member Posts: 1,261
    edited February 2012

    I second that sweetbean.

    Apple, I always look forward to reading your posts.

    I do get what you mean about the rather cold feeling.  I sometimes feel that way since I did chemo. 

    I like to read many threads and take the information that would benefit me.

  • maggiesuzanne
    maggiesuzanne Member Posts: 63
    edited February 2012

    Yes, the alternative forum is a bit scary for me to post anything....I would not want to be bullied on this forum but enjoy reading the posts...anyone who posts on this forum I want you to know I have a great deal of respect for you and think you are brave for putting up with other people's arguments which are often based on lack of knowledge or financial gain of some sort....real dialogue on this forum is sadly missing! It is still the dark ages regarding alternatives....too much money made in conventional treatments!!!!!

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    maggiesuzanne:  You're welcome anytime!  Don't be afraid of making a contribution.  

  • leggo
    leggo Member Posts: 3,293
    edited February 2012

    It is a VERY important forum, but as I have recently been made aware....there are some serious turf wars going on. I Read all the time, but regret posting. I inadvertently hurt a lot of feelings by responding to someone else's post. Honestly didn't know I wasn't supposed to fraternize. Don't have the inclination to remember who said what to whom and who's being shunned or chastized and why. I just want info. Tried to lighten the mood and got my a$$ kicked. 

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    If you ignore the turf wars there is a lot of good valuable information that can be had from these threads.  As a group we research a lot and share.  Some are better at it than others, but I think we all have someting to contribute.  Don't be afraid to join in.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    Dear Apple, as cold and isolating as this forum may feel for you, know that i feel deeply the isolation i have experienced since posting in the Alternative forum, since searching desperately for information that could help me fight stage IV disease, My enthusiasm a year ago, my spark of hope that i could influence my health and the cancer, has been crushed by the negativity and sarcasm, as well as the loss of 'respect' and 'sympathetic camaraderie' on my 'home turf', the stage IV forum.. These days, I post occasional study results that may point towards where we tried to go, and I post on the Alt thread now for others, who are stronger than me, and who may take up the challenge, whereas I was defeated. So thanks to the energetic campaign to 'eradicate' 'quakery', we now have a pallid Alt and Comp section, and I think we all have lost something valuable.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    The 'turf' wars, as you said Kaara, are hard to ignore, and distract from the flow of thinking, and from the conversation, which to some people, are vital. The information that many people are hesitant to post here, could be of so much value.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    I see a number of new women and men post on the Stage IV forum, in all innocence, about, for example, diets, cancer fighting foods, meditation, Qi gong, Alt treatments, only to be ignored, or directed to the Alt and Conv forums. Then they may come here, interested, excited, hopeful, and what they see here on the Alt and Conv forums would scare anyone off!. They soon get the message, as I did. If their interest is strong enough, and if they are brave enough, they will start posting, asking, sharing...only to be branded as 'suspicious' 'possibly not just one person, but two' 'having an agenda', but worst of all, an outsider. So to share our stories, our info, our questions,  we pay a price. And the 'lurkers' gain information, without losing popularity or acceptance.. But without the brave women and men who have posted on these Alt forums, there would have been no information. I am indebted to the many on these forums who have willingly shared under duress, thanks :)

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    We should never be afraid to stand up for what we believe in.  No two people in this world think alike and there are always going to be differences of opinion.  It's how we handle those differences that shape our true character.  It should never be about who's right, but more about what's right.  What is wrong with agreeing to disagree?   

  • Titan
    Titan Member Posts: 2,956
    edited February 2012

    I like the alternative threads...I like the "spirited" discussions.. I have had chemo/rads and you guys still talk to me...I would have LOVED to say no to chemo but I didn't...I never wanted to go to my chemo infusions but I did...reading on here made me know that I did have choices..

    I like it here..even though sometimes I get really pissed off about some things... I come on here to get information but I pick and choose what I want to do...

    I think most people..even newbies..(just because they are new doesn't make them stupid) can differentiate between the kinda out there stuff and the things that they can easily do for themselves.

  • Lynn18
    Lynn18 Member Posts: 416
    edited February 2012

    Good post, Digger.  

    I understand people wanting to discuss alternative ideas, I like reading about supplements, etc.,  but what I don't understand is the need for some to demonize chemotherapy and all of western medicine, for that matter.  Some of the current posts are downright cruel.

    For those of us with aggressive cancers like triple negative, chemo is a life-saver.   Do they not understand that?

    The saddest thing I have seen is when a woman with stage 3 aggressive breast cancer is encouraged to go against her doctor's recommendations and skip chemo. 

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012
    lynn, for what its worth, triple neg cancer can seriously benefit from diet, recurrence rates can drop. I have uploaded some links on that exact topic on the stage IV Alt thread. Some people here express their concerns re chemo, thats all. Sometimes they/we express their/our anger and frustration with treatment options/failures.. Honestly, we are afraid, as all are here, of standard treatment failing us. Some of the most helpful and informed people posting on the Alts threads have done the whole standard treatment scenario. I have done recommended standard treatment till now, (apart from Zometa) Its not some exclusive zone. Input is always welcome and encouraged, questions are always answered as carefully as possible within guidelines. Maybe the anger at standard treatment failures or options, is being misinterpreted or misread as anger at the people using those treatments? Its not! Personalising oncology medicine, defending it blindly, just as personalising Alt treatments, defending them blindly, is something we should all be cautious of doing. It doesnt add anything of benefit to discussion. I was shocked and angry at the radiation study result, well sorry, but it blew my mind...dont forget, i had radiation in the back of my mind as palliative pain relief if the sh*t hit the fan re bone mets, now I will be more cautious making that decision, thats' all. We discuss information at hand openly. (or try to)
  • Lynn18
    Lynn18 Member Posts: 416
    edited February 2012

    thats-life-, thank you for the information about triple neg and diet, I have heard some about that and am changing my diet to a more vegan one; I will look for your links also.

    I can understand the frustration with chemo, especially if you are stage IV and it has failed.  I would especially then look for other treatments.  I just don't understand the blanket statements like "chemo is a sham", etc.  It works for many.  We need safer treatments that work for everyone:)

    Also, to Apple, I can't imagine why you would receive negative PMs.  Your posts always seem honest and polite, I enjoy reading them.

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