How can we make this truly safe, supportive, judgement-free?

Sweetbean, that is my approach too - keeping to a low-glycemic diet, getting adequate exercise and staying thin may well help against the cancer, but it is in any event a good idea and should generally improve my health and well- being. Therefore I can't see any good reason not to try it. There is no downside.



This is my approach in general, I guess, and why I want to know about possible downsides to any given therapy or supplement.

I think that we should all be able to ask questions of alt treatments, without worrying that we are going to offend someone's beliefs.  I certainly have had the experience of questioning an alt treatment only to be yelled at that I am a skeptic or unsupportive, or some such nonsense.  

I  think, regardless of what type of treatment you choose, the concept of bioindividuality should be recognized.  That is, we are all different, our cancers are different, and our bodies (and cancers) will probably react differently to different treatments.   I think that is why I am such a fan of integrative treatments - like combining acupuncture, Reiki, massage therapy, diet, excercise with surgery, chemo (if needed), and radiation (if needed.)  I think hitting it from every angle gives you the best quality of life and a better response to treatment.  I have to say, all of my doctors, from conv to alt, say they've never seen anyone get through treatment like me.   My MO said, "I wish we could study people like you."  My naturopath said, "I've never seen anyone heal themselves the way you did." 

Anyway, my point (and I do have one ) is that sometimes people post solely from their perspective of their choices and their experience.  I think we should allow some space around our beliefs to recognize that others can and do have other factors to consider and that they can and will have different experiences with treatment.

YES Sweetbean, YES, YES....I think we should allow some space around our beliefs to recognize that others can and do have other factors to consider and that they can and will have different experiences with treatment.

That's how I feel, think in allowing that space, we can also withhold criticism in questions.  It's possible to ask questions in a way that doesn't threaten, or criticize someone else's choice. Most, MOST especially when we know, each of us, how terrifying bc is, and all the different issues each of us is dealing with.  A question ( demand?) for "proof" feels very critical to me.  Pushing on someone going through treatment for "answers" ("proof") to questions we might have about her treatment, beyond her willingness to describe her personal experience, seems inappropriate.  There's a whole world of information available to us now -any person can do further research to learn more about a particular type of treatment and make a personal decision based on her own criteria if  it's something she wants to try or not.

My oncologists and acupuncturist say the same thing about me as yours do about you. I was so fortunate to have an oncologist who SUGGESTED acupuncture to deal with SE's of Arimidex.

This is getting a bit off topic but I attended a pt/LE prevention class three weeks post bmx with node dissection on one side. Developed frozen shoulder after hospitalization for pneumothorax . Went back to pt as soon as I could. Frozen shoulder is just about gone and no LE. My pt has discharged me from regular care but wants me to call at even the slightest suspicion of LE. Very grateful that my HMO, Kaiser Permanente, is so pro-active about this. Caryn

What is MLD? 

JoyLiesWithin  I believe the word you are searching for is MORES.  pronounced morays.

I like how this thread has taken a more philosophical turn.  Sometimes that is what is important.  For people to put their belief systems out there, not to try to change other people's beliefs, but to explain where they are coming from.

Stormy, I'm not comparing alternative to the stage IV forum. I just think it would be nice to have the same consideration in being sensitive to those who choose alternative medicine. All stages come here looking for alternatives ways to deal with cancer. The bco threads are for support. We are not here to police or play doctor to anyone here on the bco threads. We are asking for a safe place to share alternative meds or approaches to holistic health. We don't want all the drama or have to constantly defend our choices. We don't want to be afraid to share what is working for us outside of "standard" care.

And there are a lot of women, who have tried the conventional approach without any success; and there are those like myself who are very sensitive to a lot of drugs, who can't deal with the side effects of hard drugs that are looking for other ways to treat estrogen, bone loss and ways to stay cancer free.  We all try many things until we find that one or two things that work for us. What is strange alternative cure for one person might be a miracle drug for someone else.

I also want to say that someone like maud, should be supported by her alternative bc sisters because she has dedicated so much time to the alternative threads with the intent to help. Sometimes, it feels like we are more sensitive to the naysayers than to the hard core alternative ladies. Maud is rightfully angry in that she is working so hard to make this a good and safe forum, and she's angry with those who make the alternative ladies uncomfortable here. She may have a harsh tone, but with understanding I can see why.  She's had enough of this madness and circle conversation. Some of us tip toe through the tulips, but she comes in with her knife swinging, saying STOP IT.

(((hugs to you maud))) And thank you for all your bring to the alternative forum.

I agree with your comment about name calling, put downs, sarcasm etc. being inappropriate but the door swings both ways. Just because someone is upset or angry over those types of comments made with respect to alt tx, does not give them the right to fire back in a similar fashion. That behavior is unacceptable, period. I work very hard to make sure my elementary school students learn this ( "she called me stupid first!") and I know there is a learning curve but I have little respect for adults who still operate this way. BTW, I understand how anyone can have an emotional outburst but real adults apologize and then we all move on. Kat,for instance, is such a person! Caryn

We all know that the same "opponents" frequent the alternative forum only to push mainstream treatments on everybody and insult and abuse those who choose to go the alternative route.  In fact, they only post here.  What's up with that? What's more, you don't have to be a descendent of Einstein to know that Orac, Quackwatch and all their so-called reliable sources have no real place on an alternative medicine forum.  It's just spam. 

Because the moderators close their eyes and do not ban these anti-alternative medicine campaigners who repeatedly cross the line, others then feel that it's totally acceptable to jump in and "straighten out the alties" to the point where they can't take the unrelenting hounding and circular adolescent debates, so they end up leaving.   Maybe that's the goal?  If that's the case, then maybe don't have an alternative forum.  Only provide a complementary medicine forum.   Then serious alties (like the dozens who have recently left) will immediately see that this community is not for them.  Also, the hard core pro-treatment oldies will feel more secure being only among those who share their views, and enjoy chit chat and small talk about random herbs and vitamins.  Besides, the alternative forum does not agree with BCO's business model, so it really makes no sense to keep it.

I believe that it's just wrong to mislead unsuspecting new members to think that BCO provides a safe environment for those seeking alternatives treatments, when in fact it does not.  I also think that it's too soon to encourage Chilli to come back to this judgmental forum when she's literally fighting for her life. Like she said, she doesn't have anything to prove to anybody.  However, I agree a sincere public apology would be the right thing to do in this case.

 Karma is a bitch.  It's only a matter of time before someone files a lawsuit after suffering at the hands of one these tyrannical women.  That wouldn't be too good for business.  Corporate sponsors are shrewd and they know that awful news travels fast on the internet.  Therefore, they wouldn't care to continue partnering with any recognized nonprofit organization that poses a threat to their reputation and bottom line.

Thanks for listening to my rant/suggestions and most of all thanks Maud, wornoutmom and the rest of you brave alties  who contributed so much to this forum.  

z

Interesting, how Zuvart's post above changed the whole tone of this thread. I don't choose to be one of the "we all know."  Sorry this thread is taking this tone now, maybe it's a good thing Joy is sleeping...feel like going back and deleting my earlier posts, but it's not worth the effort...

exbrngrnl's post was spot on.

Maud, the only way I can see the alternative forum working is if it's totally seperate.  It needs a responsible sub-committee of NDs and a different set of moderators too. I don't see them doing that though. It might work too well.  

And I'm not worried about Chilli. That woman is strong! 

yes, you're right Zuvart, Chilli is very strong