Stage IV's Using Alternatives Deserve our Respect and Admiration
Since the long term prognosis for those with mets using conventional treatments is so poor, those who decide to try alternatives are at least looking at the possibility of extending their life further should the alternative work for a while. They can at any time change their mind and use conventional if they choose to, or alternate between conventional and alternative if that extends their life. At least with active tumours there is feedback relatively quickly as to whether any approach is working.
Those who are 'brave' enough to come here and let us know their treatment plans may need to emphasize that their treatment may not work for others. But any inference that the treatment will fail is not proven and fails to acknowledge the possibility that life may be extended. That conventional treatments will fail eventually is sadly proven every day, though the extension of life is much appreciated no matter by what method.
By posting here, there is the chance that anyone who has negative experiences with that treatment can inform them. There's a chance that successful treatments could be taken up by others and extend many lives. If anyone wishes to debate the usefulness of the treatment they can do so, but the continued personal attacks are a breach of the terms of use and achieve nothing except bad feelings all around. Respect costs nothing and feels so much better for everyone.
So I'm appealing to everyone to please leave us alone unless they have something supportive to say. This is first and foremost a support forum, and anyone who chooses to forgo conventional treatment is within their legal rights and will not change their minds due to being called names or ridiculed. But the more moderate alternative members may hold more influence provided they aren't constantly interrupted in their endeavours to befriend and help their fellow BCA sisters. Please, conventional users, don't underestimate our desire to help our sisters when we see a strategy is not working. We all care and we are capable, thinking people.
Comments
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And why should anyone need to be 'brave' to post here? If we can't get support due to our personal treatment choices then this is no longer a support forum and has failed.
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Conventional only, compared to conventional mixed with alternative.
Chemo A fails - Ch B works - Remission - Ch C works - Remission. Ch D fails etc- Hospice
Alterntv A fails - Alt B works - Remission - Alt C works - Remission - Alt D fails - Ch A works - Remission - Ch B added to Comp E works longer - Remission - Ch C works, Remission - ChD fails - Hospice
Both examples use four chemos for brevity, two working and two failing, and assuming two alternatives extend life and one complimentary treatment helps the chemo to work better, it's clear that using Alternatives in the place of conventional for some treatments can extend life. It's easy to see if anything is failing and change strategies. When anyone clings desperately to a failing treatment, whether conventional or alternative, then they are risking losing their life earlier. Waiting till all chemo's have failed is too late to try the alternatives as the tumour load is too great and the patient too weak.
Yes, this all assumes that some alternatives actually work for at least a limited time. But by banning the true alternatives (I don't mean massage, meditation and other so-called integrative therapies) people are losing the choice to extend their life longer and missing out on any possible advantages. Sorry but I just can't understand that thinking and it's definitely not logical or ethical.
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It's been confirmed that some women have recently left BCO due to what they see as harassment. I have noticed one person missing who used to post a lot. I don't know if they're just away from home or leaving BCO. Let's hope we can sort this out and get them back for support, theirs and ours.
Sorry if you're all sick of my long posts. I'll be away for a day after going to bed in an hour or two. I'm going out to see a performance including A Cappella with my mother and sister. Yes, I do have a life!
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Thank you Joy, I do not post much, but do come often to get ideas to make dealing with this mess called breast cancer and side effects, from treatment. I've been in this situation for a very long time, starting out with IBC 3b, IDC, and lobular. Due to the worst possible side effects, I will not elaborate on them I am out of any conventional options for some time. I come to these forums to gleen what I can and incorporate into my life as many to up my quality of life. As I said I've in this for a long time and I'm still here I think due to the informations I've gotten from these disscusions.....Thank You
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Joy, Thank you for your call for maturity, tolerance and reason. You'd think there were actually a cure for breast cancer, considering all of this infighting. May your example be heeded.
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Tolerance and civility, why is that so hard for some, regardless of which end of the tx spectrum you're on? Personally, if you wish to stick a banana up your nose and feel it helps your bc , who am I not to respect your decision? My frustration lies with the childish name calling, nit picking and rude behavior exhibited by some, be they alt or conventional. Ladies, let's just agree to stop putting any energy into the nonsense. Caryn
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Hey! I am a follower of the alternative threads and I both respect and admire you all! And not just the Stage IV folks either. So okay I'll name some names... sweetbean,Thatslife, Heidihill... among those whose posts I pay special attention to (although I admit not always with complete comprehension... I'm learning). My opinion (and my opinion only) is that we'd be fools not to at least consider some of these theories. Somewhere buried amongst the alternative and the conventional lies the key that will unlock the cure to this ugly disease.
By the way, I did read a scary post once on an alternative thread... a "go away and take your poison" type thing after some people talked about how chemo had been effective for them. In no way did I think that it reflected the majority though. In fact I ran right over to a thread that sweetbean started and told her how much I appreciated her!
We're all in this together. Thank you, joylieswithin, for reminding us of that.
Rose.
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Rose, Good post. Sadly the disrespect and name calling has gone both ways. Why would any of us, facing the bc beast, put our energy into such childish behavior? Truce time is long overdue.
Caryn -
Caryn, it's probably not a good idea to name-call in a post calling for no name-calling.
Just a friendly suggestion.
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Patty,
What name calling did I do? Childish is exactly what name calling is. Not directed at anyone in particular. Why do we keep trying to pick each other apart and jump on every little thing everyone says. If I could find some completely neutral language I would, but I haven't found it yet. I give up. Even calling for a truce invites someone to start pecking away. Caryn -
Oh for pete's sake. Caryn has been the voice of civility and respect in this and several other testy threads. I don't see name calling anywhere in her posts, just a plea for mature and thoughtful behavior from people on all parts of the alt/comp/conventional spectrum. Thank you, Caryn, for your input here and elsewhere on BCO.
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yes, I agree with Kadia. Caryn is lovely.
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Why would we not want to learn about ALL treatment options - be they conventional or not so much - from anyone generous enough to share their experience? Prior to my BC DX, I was spending a lot of time researching alternative treatment for autoimmune problems, inflammatory disease, and thyroid issues, since my doctor said I was "fine". I learned a lot. Since BC, however, I am learning even more how all of these processes can be linked to one another and how simple solutions are sometimes the best and most effective.
Am I trying to shove my ideas down someone's throat? No. Even when speaking with friends in "real" life who are dealing with the same issues (non-BC), they tend to glaze over and don't want to hear what I am saying because it doesn't fit what their doctor is telling them. I stop. It's their choice. If I have a receptive audience, I'll talk. My mother has some of the same issues as I do, and now almost three years later she is just now starting to think I may have some recommendations for her. I don't think she's wrong - it is her choice.
I am awed by those in Stage IV who are trying everything in their arsenal to live their lives for as long as possible. I have read about miracles brought about by "alternative" treatments. Should I ever find myself in their situation, I can only hope I bring what knowledge I already have and be open to new ideas.
As they say in kindergarten, close your mouth and put on your "listening ears". You might just learn something.
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Steelrose wrote:
"Somewhere buried amongst the alternative and the conventional lies the key that will unlock the cure to this ugly disease."
My sentiments exactly!
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I think the other issue that arises is the difference between a support board (or thread) and a discussion board (or thread). In a discussion board, there will be discussion and sometimes debate about issues and treatments and approaches. This will inevitably include questioning and disagreement, which for me is fine, but which for others may not be. To some people, disagreement or questioning by itself may seem out of bounds, where for others, that is part and parcel of a discussion.
That said, the discussion should be civil and respectful--regardless of stage of cancer or choice of treatment, IMO.
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Thank you all for your kind words. I try to be as neutral as possible but using certain bits of descriptive language is sometimes necessary. It's hard to say what I mean without adjectives. Anyway, your kind words saved me from giving up on bco which has been such a sanctuary for me since my stage IV diagnosis. Caryn
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I agree with what Caryn said.....
What I love about the discussion boards vs an "in person" support group is that if I don't like what someone has to say I don't have to read it!!!!
We're all in this together....take what is helpful and igore what you don't like or agree with.....I've done all the conventional Tx and still struggle with late/long term side effects from Tx....so I'm looking at the "alternatives" to get back my QOL....
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ALL STAGES PLEASE -- I find JoyLW to be a voice of reason and am so grateful to her for stepping up and calling all to a discussion. The only exception I truly feel for this thread is that all stages deserve the respect. I am uncomfortable with only stage IV being the ones called for this assistance. This is across the board, an issue that touches each person inquiring, choosing, using, deciding to not use for awhile, flourishing in and/or sadly struggling with alternative choices in general.
WE LOSE PEOPLE WHO NEED TO BE HERE AND WE NEED But that is the way I think the conventional harassers aim for their attacks to work. Push the alternative people to the point they lash out and eitehr get banned or leave. The bashing is cruel, calculated and sweetly sarcastic.
In the last week, two people I know have left or been banned from bco. Both of them were strong in alternatives, one after using conventional and the bc came back it seemed, and she was freaking out and stressed, searching out anything in alts that would save her.... and she said what she felt and thought and now is gone. The other cracked after months of attacks.
Another woman was banned, I know, for saying the same thing a conventional woman said. She got two weeks off bco. She does not plan to come back. The conventional woman remains, as always, unchanged.
Another left due to the ridiculous arguing.
And so on.
PEOPLE AFRAID TO POST I receive pms from others who lurk and and read but do not post because of the stress of being attacked or harassed.
Across the boards on bco, I do not see this anywhere except alternatives and coming from conventionals who want to push, nag, argue, harass, make sure we know that all alternative people are gone and dead by now and that is why they re not posting.... yes that has been said and I standby it whether it may have been deleted or not later. There are pages of alternatives threads that are deleted, and entire threads from alternatives that were ended because the discussions just could not happen due to the harassment.
RISKING LIVES ? Really? We are told that so and so came to the conventional thread for info and the conventional people come to alternatives to accuse us of telling so and so that they should do thus and so and that we are causing them to risk their lives.
I am not saying that on an individual level this advising or even medical doctor play cannot happen. That is why we need to keep it in our experience, strength and hope. Give links, book info, support. We are not to advise the seekers to do this or that. It is only about us, what we know, what we hope, what we believe and for them to continue to seek their answers.
If that happens on an individual level on the forums and threads, other alternatives people would and should call it what it is, advice instead of assistance.
Conventional people need to respect that we are mature and the seekers are mature and will make their decisions.
Take your poison comments - I, too, find this to be disrespectful from either side. That said, there are poisons in both alternatives and conventional. Too many too fast of the Laetrile B17 tablets can take you DOWN! Bitter apricot kernels are toxic and have a slow start and upper limit or else. Sheep sorrell. Cesium chloride. Paw paw has its limit. And more.
On both sides of the board, there are women risking their health and lives in order to regain their health. Therefore there must not be 'sides' to these boards. There must be respect.
MODERATOR POSITIONS I don't know why the alternatives threads are places where conventional, admittedly so, are allowed to post and haggle details and ask proof and harass alternatives. Alternatives people would not do so in the chemo or radiation threads, we would not, nor would we be allowed to do so.
I, for one, call the moderators to please support the discussions so they do not go into overloaded and ridiculous debates.
Not only for Stage IV, but for all alternatives threads. Alternatives is not the complementary, it is about seeking answers in alternatives and we should not have to wade through debates and arguements and harassment.
CALL FOR RESPECT Moderators are quoted, "Let's keep this thread respectful." But the disrespect is happening as the conventional people haggle and interrupt and disarm the alternatives with demands, hassling to no end and making death cries. But no name calling allowed? Seriously? That is my issue.
SIMPLE ANSWER, TO ME That conventional people are not allowed to post in alternatives with exception of genuine interest and seeking answers for themselves. They can read, they can private message seekers on the side, their prerogative if they feel so strongly that seekers should never seek alternatives. But alternative discussions being left to true alternatives people, that is the only answer I see that will work for us after witnessing this long history.
Editted for typos and to Add -
Stress is what we need to leave behind for our healing. We do not need to come to bco to get a dose. Please make changes.
Thank you for listening.
Joy - again, well-handled.
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Diane, I agree wholeheartedly that we all deserve respect regardless of Stage. I have been in private conversations with a couple of Stage IV's this last week and that's one reason why I was concentrating on them. Also it's hard to argue the case for any treatment for early stage since we can't see if they have beaten the odds without large studies, so I wanted to start with metsters who are telling me they feel harassed. Fortunately there's a huge improvement in people's attitude in both camps and I'm hoping this will all blow over till the next time. I'd like the alternative members to feel safe and comfortable posting here regardless of stage and hope we have achieved that for a while at least. Sorry if I'm not making sense as I'm very tired.
I must get to bed now and will read through the thread tomorrow Australia time. I see you've made some pertinent points which I'll get to tomorrow.
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DianeEssa~
I really want peace on all of the threads.
Before you joined BC.org, people did jump on the chemo/radiation threads and bash the treatments.
I think many should think before they type, myself included.
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Yes, sadly, the door swung both ways, hence my call for a truce, regardless of what you believe.
Caryn
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I think we're all in agreement we'd like more peace and respect. And it's clear that the problem comes from both camps. It's not our medical beliefs that make us impulsive or insulting, it's how strongly we hold to our beliefs and whether we feel personally insulted when someone disagrees with us.
Some people will always have drama in their lives as they make it by getting offended frequently by normal everyday events. People have different beliefs. They disagree with us. They do things which we fear will cause harm to themselves, others or even to ourselves. These are everyday events because we're all different. It took me maybe a decade to really understand this saying...
You create as much harm when you take offence, as when you give offence
I observed many situations where there were upsets and dramas to see that the saying is true, and then applying it to myself was and still is a major challenge. We cling so hard to our pride. How dare they say that! But when we can let it ride and not get all worked up, we have more peace and can sort out the situation if required from a position of confidence and calm. Once I got that, I found I was more able to be calm in difficult situations. I could see the bigger picture. But it's not easy and we can only work on ourselves, not others.
ETA this could be the original quote: You add suffering to the world just as much when you take offense as when you give offense. Ken Keyes Jr. 1921-1995
It goes well with this quote about the futility of feeling ill towards another: Hate is too great a burden to bear. It injures the hater more than it injures the hated. Coretta Scott King 1927-2006
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Diane, your last post is so important I'd quote it all here and highlight it if it wasn't so long.
The bottom line for me is that the moderators should be taking care of this, and that may mean changing the rules of conduct. I don't want to stop debate as that is important in helping us all make decisions. Maybe our alternative section could be off limits for those who aren't contributing alternative ideas, and a separate debating section made for those who want to engage in debates, with rules for no personal insults etc. I'd be more than happy to debate without taking offence, but others are not emotionally up to debate and could stay away. But how could we implement those rules?
Like you I see taunts that we're dying off, I see needy people leaving BCO, and the sometimes aggressive, sometimes polite but frequent chip chip chipping away with criticism, wearing us down, when a person is badly needing emotional support. These critics could be directed to the DEBATE threads. The other threads could be labelled SUPPORT.
What do the Moderators think?
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Hmm.... Interesting idea. We try very hard to develop different forums and strategies (i.e., Ignore member option) so all members can find a safe and respectful community on the boards. We find that when threads or topics become 'heated', members flock to it, regardless of what the thread/forum is called.But, we will keep your good suggestion in mind.Your Mods
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I just wanted to add that I agree. Caryn has always posted with respect and decency. Why she would be accused of name-calling is beyond me. I don't know her but for the most part I remember everything that anyone has ever posted and I didn't see it....ever....unless it was some misunderstanding of which I'm not aware.
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I sincerely hope that a preferance for an alternative is not a Southern Hemisphere "thingy". I've decided to "pass" on chemotherapy etc after my mastectomy on 30th April. I've been to a nutritionalist, who put me on a radical healty diet, that was initially a bit hard to swallow, but beginning to taste like real good food four weeks down the line! I'm down from 45 to 5 cigarettes per day,goes for weekly messages, say my affirmations, lost a lot of toxins with excess weight and my immune system doubled in stenght in the past five weeks etc. A small tumor in the lb did a disappearing trick since February, but the larger one in the rb doubled in size to confuse me, so I'm having it off - African Style. I am adamant that chemotherapy is nothing but pure poison? - Inchanga, Durban, South Africa
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The idea of the Debate and Support sections would be so we could refer anyone debating our choices on the support section to the debate section so they could still express their concerns, but members requiring support could stay with their supporters. They would need to debate the topic, not the person of course. That seems to happen anyway between different threads. It just came off the top of my head so I haven't thought it through much. Any ideas or drawbacks anyone?
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Sounds good in theory Joy. Having said that though, inevitably debators (not sure that's the term I would use) will end up in the supporter section....guaranteed. Debating the topic and not the person is probably wishful thinking. I have my doubts it would work out that way....it would be nice....but unlikely.
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I'll take the Mods word for it that people "flock" to the heated discussion threads. I seem to wind up at some of them because I look in active topics, see a title that is new or interesting, and want to see what people are saying. On occasion, I have an opinion At times, it is mainly these bickering threads and the games threads that are active. I don't do the games much. Remember when the Mods recently removed a thread from Active Topics? I know it was to diffuse a situation and preempt the "flocking" had it stayed visible in Active. That was a little weird, in the sense that it was hiding the discussion going on. It felt like being in the curtained off "porn corner" in a video rental store. Not that I have ever been in a "porn corner" before.
I think that having a Debate section separate from a Support section will not fix the situation. It will eventually come to people on the support threads either being (or be accused of being) unsupportive then asked or being made to leave. It will eventually come to people on the debate threads overstepping the smudged line between heated opinion and outright scoffing, and the Community and the Mods will still be deleting away.
I like the IGNORE feature of this discussion board. I have rarely, if ever, used it, but I like knowing it is there. If anyone has ever deleted [edit: ooops! I mean used "ignore" on] me, I have no way to know and, therefore, cannot be bothered.
Honestly, I cannot throw my respect out like a blanket to cover all in any given group. Not even all Stage IV women. "What about innocent babies, elimar?" you might ask. Nope, not them either. My admiration is an even more limited commodity.
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Those who frequently interrupt our conversations with criticism would have no excuse once they are informed to stay off the support threads once or twice, so hopefully we'd only be dealing with those who aren't aware of the rules. It would depend on us being able to delete them if they continue after being informed.
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