I would just like to know....

leggo · February 2012

The following is the definition supplied in the the "alternative" forum."TheAlternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment.Please share your experiences here, but please also refrain from providing individual medical advice". Why would anyone want to read this forum if they are interested in only conventional therapy and/or a combination thereof? The description says it all and it is that individual's life, not anyone elses. The condescending tone to many of the responses to an individual thread is unnecessary. Really, not your problem if their alternative treatment doesn't work and not your job to continually bash it and tell them why they're wrong and your right. Geez, it's like watching a train wreck and it ruins it for those who are really only interested in alternative therapies. I know their will probably many responses as to how it's important for newbies...how it's our duty....etc. I don't buy it. I think some just like to argue.

Edited to add: BTW, there is a forum for complimentary and holistic combined, if that's what one is interested in. I think sometimes people forget that.

thefuzzylemon · February 2012

Gracie...it happens. That's the risk in an open forum. Stay true to yourself and try to look past the interference. It is so frustrating. If there is anything posted that is offensive, you can ask the moderators to review it...they are super awesome about nipping a problem before it gets out of control.

But, debates will go on and on. I do love a person's passion, but I'm with you. If you don't support the thread/topic/views/feelings etc...there are many other threads that are available...

I personally don't seek to irritate anyone. I stay on threads that I have something to contribute to. Made the mistake (once...just once) of entering and posting in a very special group...I got slapped all over the place. But, they were right...I learned my lesson and licked my wounds...

leggo · February 2012

I so appreciate your respone fuzzylemon. When I asked, I probably already knew the answer, more or less but it's something I just can't wrap my head around. I think you hit it spot on. Those are the hazards, like you said. I would never ask the mods to remove offensive posts. I say let them sit there to be viewed and mulled over. I'm so sorry you got slapped around BTW.

Circles · February 2012

I am using alternatives. I am in no way advising anyone else to go in that direction. This is simply the decision I have made for myself. Why? Because I am afraid of chemo. I have seen people do chemo... And it isn't for me. I had an Onco test done but even before my score came in (22) I told my husband if it was 80 I doubted I could make myself do it. I am seeing an Integrative Physician and following his advice and Life Extension's cancer protocol. I take Metformin and 68 supplements a day plus as much vitamin C (1000mg) spaced out two hours or more, often through the night as well. I take a lot of enzymes, also through the night. There is mushroom extract, 13C and more. In March I start Vitamin C IV treatments. I have submitted a hair test for Chelation.

Am I knowledgable about cancer? Not much, though I have read and do appreciate Suzanne Somer's books. So please don't think I chose Alternative because I think I know more than a person who chooses chemo and radiation. I may be wrong. Maybe the person doing chemo and rads is wrong. Heck, I just don't know. I don't know how I got cancer. I don't know how my lump of 25 years ended up as cancer. I don't know anything except my gut instinct.

Like anyone with cancer, I am scared.

Circles · February 2012

Adding to favorites. Please be kind, ladies.

1Athena1 · February 2012

Good thread, Gracie.

thefuzzylemon · February 2012

LOL...it's ok...I learned and I recognized that they were totally right! I respect threads in a whole new way and I'm glad that happened early on!

I contacted the Mods once...now, when I say offensive...I mean offensive...it was really bad, totally out of line and very threatening...crazy is as crazy does I suppose...and it was on a thread that is sooooooo funny and meant to be completely out of line....she just couldn't get over the mockery and got super nasty...

I can't wrap my head around it either...I love to be able to express myself, but BCO is my safe place...my sisters that are my family. If your thread ignores them, eventually, they will go away. If there isn't a game to play, they'll go where they can find one

HUGS!

Bren-2007 · February 2012

Hi Gracie ... I saw your name with the topic in the Active list and read your note.

I never post in the alternative forums ... because, frankly, I don't know that much about it. Sometimes a topic will catch my interest and I'll follow it for awhile.

What does bother me is having the moderators remove posts and lock down threads. Some of the discussions that have been locked were very interesting. It happens all across the board, not only in the alternative forum.

Thinking of you and hoping you're feeling better,

hugs,

Bren

leggo · February 2012

Thanks for thinking of me Bren. I do feel so much better. I guess I never noticed it happening in other forums (well, in some, but not to that degree), so I never really paid much attention. Probably because the alt forum is so close to my heart, I got my panties in a bunch. One of the posters turned me on to a new way to navigate the boards other than the active topics, so I'm over it. I just get so sad sometimes that there are alternative treatments that can and do give some extra time on earth. That's what gets lost in this mess.

Circles · February 2012

I stand by you, Gracie. I'm sorry you had a bad experience. The cancer itself is enough to deal with and no one needs stress. I was once a poster on a diet BB and I got a lot of bashing because I did my own thing that was best for me. It got so ugly and I cried a lot over it. Eventually I moved and didn't get internet for two years because of the experience. I feel your pain.

leggo · February 2012

Circles, your post made me so sad; nobody should have to cry because of a message board. I'm so sorry for you. My experiences here have been positive for the most part so please don't feel sorry for me. I pick and choose what I read, but I have learned my lesson about posting on the alt forum. Too many fights and that's a shame. I'm sure it keeps many from sharing.

thats-life- · February 2012

Gracie, please dont stop yourself posting. We all DO need to discuss these options, they are very important. Here is a large forum of people specifically with BC, which is a cancer that diet etc most likely can influence, certainly in some cases. I know many people are hesitant to post their information or their successes, or their protocols...I would like to say here on your thread that if we could be less afraid to post, and think maybe about how one little comment can add to the health of one person, and for a little bit of flak or sarcasm, maybe help or inspire just one person, wellll....to me its worth it. I have been ignored, laughed at, abused....but its worth it. So please, if you read these threads, and want to join in, go for it!....I know there are alot of people who follow, and appreciate the effort and information, but they keep silent. It would be fantastic if we were free to explore the terrain in an atmosphere of enthusiasm, and intelligently work the chaff from the grain together.

Kaara · February 2012

I would never let some sarcastic poster prevent me from reading and posting on the forums that I enjoy. If you do, you are playing right into their hands, as what they hope to achieve, is to run off all the people who have a perspective that is different from theirs.

As someone said above...better to ignore them and they will go away when they can't get a fight. Once in a while I can't resist firing back. Once I sent a PM and I never heard from that person...not surprising, because they had nothing to gain in private, only in public forum.

MariannaLaFrance · February 2012

I'm glad you started this thread.

My mom always said: There are more anal orifices than buttocks in this world.

Don't pay attention to haters. Ignore is a great feature. I've got the whole lot of them on ignore. They are like a roving gang.

MariannaLaFrance · February 2012

I started off my last thread with an old adage that my mother used to share with me, about how the world has an overload of orifices versus buttocks, but decided that was much too vulgar in this great forum.

It's true that many are not allowed to share their point of view here, and there are a lot of posters with great information that have moved on due to the divisive arguments that have occurred here. Ignore is a great feature, and will cut down on the stress that you feel while reading the forum. I wish the moderators would see the behavior on the whole, but they have not taken any action to disband the roving gang of haters.

Don't listen to the haters. Remember the religious zealots of the 17th C who burned women at the stake for their behavior? There is a personality type that is attracted to that particular type of groupthink, and don't think this trait has disappeared in mankind. It has simply manifested itself in different ways. Same kind of behavior, different century.

thats-life- · February 2012

Another important point i think, is that people who try alternative treatments, or are trying different clinics/diets etc are hesitant to post not only their successes, but if those treatments fail. I think, because the barrage of i told you so's are too hard to face on top of our own disappointment. Yet when conventional treatments fail, there is sympathy. To be able to discuss our treatment successes and failures without fear of ridicule or false sympathy, would be beneficial to all.

Anonymous · February 2012

Circles,

I'm so sorry to hear of your bad experiences. Please accept the reaching out Gracie has started with this thread. One of the ways to de-stress this group is to block messages by members who compulsively post here trying to intimidate the alt people. Then you'll just get messages from the serious, kind people. Kiss

The line between alternatives and complimentary is not clear to me. If you do one conventional thing, does it make you conventional? Are you complimentary if you do the full recommendation and then add on alternative therapies?

I just did surgery so, y'all are going to have to figure out what category I fall into and tell me! I'm not big on cataegories as they seem useless when we're just trying to move ahead with our lives with the best plan we can find, one day at a time.

leggo · February 2012

Lucy, please don't take this the wrong way, but thanks for the laugh (y'all are going to have to figure out what category I fall into) Ha! I don't know about you guys, but the more people you put on ignore, the less sense the thread makes. I can barely make heads or tails out of it anymore. You see a response and think WTH is that about? Makes it difficult to follow a conversation. Just out of curiousity, is there another message board that anyone knows about re: alternative that isn't this volatile?

ETA: I love your post buy the way. I hope everyone reads it. I think most of us don't fall into a specific category, we just want to arm ourselves with info.

sweetbean · February 2012

Hi Lucy,

I consider myself integrative! I did all the conv stuff, every last bit, and am doing a ton of alternative stuff as well, such as low dose neltrexone, qi gong, mistletoe, mostly vegan diet, etc. I tend to stay away from any threads that are super negative in any direction, either alt or conv. I do a lot of research and am happy to put my knowledge and experiences out there for people to read about.

Anonymous · February 2012

After doing chemo (against my better judgment) I have been seeing a naturopathic oncologist for a few years. It just felt right for me. This is what I am doing/taking:

Indole 3 carbinol 200 mg 3 x a day

MCP, a scoop a day

Omega 3 wild salmon & fish oil, 3 per day

Vitamin E 10 (taken with EGCG -green tea capsules)

Active Green Tea caps 700 mg once per day

C0Q10 (ubiquinol) 100 mg daily

B100 complex

calcium with D3 650 mg twice a day

Bell Supreme Immume Booster - pure mushroom extract coriolus versicolor, 3 per day

R+ Alpha Lipoic Acid - 1-3 per day, 100 mg

Grape seeed 500 mg once a day

Vit D3 - 2000 mg day

Milk thistle complex 550 mg 3 per day

Quercetin w/bromelain 500 mg 4 x a day

vit C, 3000 mg a day

Super reishi 500 mg once a day

Super acidolphilus with FOS 11 billion, 1 per day

I exercise several x a week, bike ride, rowing machine and walking, plus dragon boating in spring and summer. I also have been doing infrared sauna to clear toxins.

I had to learn all of this the hard way....once you are dx you get pointed to the chemical method of 'curing' the cancer. No one in the medical field tells you about this stuff. And I don't know if it's working but have read studies on what I'm taking an it's all good. Also, just did a blood estrogen test at my doc's and all was in normal range. The bad estrogen was way down to normal levels so I guess the combo of what I'm taking is working for me. So far.

I like to stay positive as well. I'm adding this to my favs!

tucker

Kaara · February 2012

I said this on another thread but I'll say it here as well. When I think of surgery, I don't put that in the conventional category, because even the most ardent alternative gurus recommend that if you can surgically remove a tumor, do so, because it takes too much energy from the body's immune system to try and kill it off. Better to let that energy be put towards removing stray cancer cells.

After watching so many of my friends undergo chemo with bad results, I decided it was not for me. Fortunately I didn't have to make that ultimate call, because my oncotype score came in low risk. I did consider rads, but only briefly, and when I couldn't get a short term version, I opted out. I did agree to take tamoxifen, sort of as a compromise with my doctors. I will stop the minute I feel it isn't right for me. I feel I'm on the right track with my diet and supplement program, and the tamoxifen is just added insurance for the moment.

Circles · February 2012

You know what? You ladies are right. If we are interested in alt treatments there is no reason to let haters run us out. We are here to gather information. I agree when ignoring it is hard to make sense of any thread. But to just ignore any negative comments by not responding in any way would work. A bully wants a fight. Without a fight a bully has no purpose and will go away. I cannot imagine any of us going to the chemo rads threads and arguing over their treatment options. We aren't here for that.

I consider combining alt with conventinal is integrative.

Kaara · February 2012

Cirlces: Right on....can't start a fight in an empty room!

Ang7 · February 2012

I'm sorry Circles,

A while back there were ladies who did just that "went on the chemo rads thread and argued over treatment options." I am trying to read and gain information from both. No time for fighting...

Circles · February 2012

That's a shame. I agree. The only time I have for fighting is fighting cancer.

leggo · March 2012

Again...Heading to the forum: Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Please share your experiences here, but please also refrain from providing individual medical advice.

It's right there in capital letters....INSTEAD of standard evidence-based treatment.

It is so tiresome.

I would just like to know....

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