Is it possible to post negative Alt experience?

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

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"?

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.

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.

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.   

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!!!!!

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. 

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.

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

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.

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)