alternitive is only real hope for stag 4 mets

exbrnxgrl

lily55,

I'm not a chemo refuser, though I've never been on chemo myself. It simply did not fit my situation. It's true that the alt forum did not always have the mods bold face disclaimer, but I would say that this is probably not the best place on the internet for unconditional support of alt tx. Every forum/discussion board has a "personality" bco definitely leans strongly toward conventional, which is why dust ups keep happening on the alt threads. Not a judgement or a condemnation, just one woman's observation.

abigail48

there were sites mentioned in the disappeared forum, when I went to look for them the forum was gone.  but I think most of these are for all cancers not just breast & therefore not just mostly women

exbrnxgrl

Well, then I sense there is a great opportunity out there for someone who wants to start a site/discussion board dedicated to alternative bc tx. (For those who doubt my sincerity, I have made this comment with no irony, condescension or cynicism ).

juneping

this is BCO...and here we have chemo and alternative subforums. may i ask why can't ppl respect others and praise chemo on the chemo thread and let us discuss alternative here? it's just a little RESPECT. where am i supposed to go? it's a free country right?! or only when i share the same view with you or else i should STFU and go somewhere else? i have BC and i want something different than conventional. i though here is a little place we could share and some ppl feel the need to come in here and tell us that we are suicidal or foolish. 

exbrnxgrl

juneping,

You are absolutely free to be here on bco and express any and all opinions. However, IMO, this is not the optimal place for support if you are exploring alt tx, simply because this is a site that leans heavily toward the conventional. That is why you see a limited number of posts and posters who are using only alt therapies. I don't have all the historical info to say why that is, but it's pretty clear that it is. Yes, there is an alt forum on the site but sometimes it seems akin to a gun control forum on the NRA website (hypothetical, don't know if such a thing exists on the NRA site). 

Momine

June, nobody said that. One poster, Hindsfeet, expressed doubt as to the efficacy of alternative treatment.

Inga, according to the fundme page, has been through several treatment approaches that didn't work and left her progressing to stage IV. That is upsetting to most decent people. 

DivineMrsM

I completely disagree with the thread title stating alternative is only real hope for stage iv bc with mets. There are many of us on the stage iv threads living with bc for a number of years using conventional treatment.

Having been a member of the forum for several years now, I notice every once in awhile a newbie to the site thinks they're going to set the bc world on fire with their new wave thinking. Hey, knock yourself out. Certainly, you have every right to your beliefs. Just don't spend all your energy trying to get those of us who've been using conventional medicine for years to jump on your bandwagon. You know, use your energy to get healthy.  (Did you ever consider that many who deal with stage iv bc have at least read up on alternative medicine and decided it wasn't for them? Or decided complimentary medicine was the best route?)

And also, like that catch phrase from the Jerry McGuire movie: "show me the money". Live it and show me your results. Show me compiled results of many others for whom this worked. Don't tie it into asking for a money handout because it makes you come across as insincere. If you're really in this to spread some kind of wellness message, do it for free. Because there have been enough scams out there of people posing as cancer patients asking for donations that don't actually have cancer but want the cash to fund their drug habit, or vacation or new car.

Don't think we are all some dumb ladies who feel sorry for ourselves and aren't knowledgeable about this disease. That's a big turn off too. 

pupmom

I have 2 words for the title of this thread: INCREDIBLY OFFENSIVE.

inga6060

Ditto, yorkie.  Not my intention to convert anyone.  first of all my story has a lot more to it, than what is on that website.  I didn't stay on anything long enough for it too work.  Then I put too much faith in a practitioner, which I shouldn't..  I didn't align myself with the right person from the beginning.  Tried to do it myself with this person.  I recommend to everyone to find an integrative Dr.  I think it is too diffficult to do by yourself.  Some have done it.  I don't recommend it.  Then I was dealing with some extreme childhood memories.  I stopped doing anything at that time, just trying not to kill myself.  Treating cancer was not even in the equation.  This is an alternative board. Everyone needs to follow there own path.  Sounds like everyone just needs to take a pill.  We all want the best for each other.  For those who don't agree with alternative, shouldnt read the postings. . I feel for ones who are searching.  I believe everyone should have as much information as they can get, so they can feel good about there decisions.  Oh, yah, I personally know of 3 people who came back with late stage cancers doing it naturally.  This was when I working natural health stores.    I am willing to put with the ones who shpuldnt even be on this thread, to possibly even help one person.  That's what I thought we were here to do.

 

DivineMrsM

Deleted by Mrs. M

lightandwind

Oh my, why not just accept that there are people in the world unlike ourselves?. It's no reason to be so nasty. Why not practice tolerance. What do you guys think you are accomplishing here? It is the alternative forum and you're just here ganging up throwing rocks at her for using alternative, speaking her mind and being herself. You are acting like people that use alternatives don't belong here and they are threatening you somehow. 

AmyQ

Ditto to what Mrs M said...AND It's weird but so many controversial threads end up as Alternative Medicine topics and sadly, I can't take them seriously because they (the topics) end up sounding like snake-oil remedies. 

I also love the recommendation to get to know the BCO members first.

AmyQ

Oh rats, now your post has been deleted and I don't think it should be Mrs M. You have a valuable point that deserves to stay as much as the rest.

lightandwind

Just because someone is new and they are not familiar with the unwelcoming culture here at bco, it is no reason to be cruel to them. She has not done anything to any of you. Mercy. 

AmyQ

I don't think anyone has been cruel, only correcting her statement that alternative is the only real hope for Stage IV mets. That's her opinion and when it's made as a declarative statement, others disagree but I haven't seen cruelty.

Deblc

Inga, I would like to hear the stories of the people you know personally that were cured of late stage cancer by alternative means. I am one of those searching for corroboration of claims that alternative treatments work, but so far have not seen any proof of this. I don't think people want to/need to be cruel (or I hope not) when expressing their disbelief that alternative treatments work. Speaking for myself, I am sceptical of claims without proof and am searching for convincing evidence before going that route. I mean no disrespect to anyone who choose to believe without proof, but I would welcome if anyone on the alternative forum could provide clear and direct evidence of any alternative treatment that has worked. Believe me, I would jump on that immediately !!

exbrnxgrl

debic,

I echo the feeling that you've expressed in your post. Is there a database available that would allow us to "see" these stage IV cures and their tx? I know there are those who require no more than anecdotes or feel they don't have the time to wait for databases and research, but my mind doesn't work that way. Blind faith, regarding anything, has never been my forte.

DivineMrsM

I haven't been cruel at all. Just stating my opinion and my observations. Did you read the part where I said you are entitled to your opinion? 

If you're not stage iv then you have no stage iv experience from which to speak. I won't spend much time on this topic. Just saying that the title is inflamatory. And after reading numerous posts by the OP, to me she comes across as somewhat scattered, so I'm not inclined to think she's any kind of expert on the matter. However, if she feels her methods are working for her, more power to her. I just don't see how you can claim to be two years stage iv with the disease and feel you have all the answers. Again, this is an observation. 

I could go on, but people hear what they want to hear, see what they want to see and believe what they want to believe. It's not up to me to get you to change your opinion whatever it may be.  Peace out, sisters.

Deblc

Caryn, Unfortunately I am the same way. I envy those who operate on blind faith, I think they are a lot happier. My problem with not having any "proof" of efficacy is that there are so many treatments being touted, how would I choose which one to do ? Because I certainly don't have the energy or discipline to do all of them.

lightandwind

Debic, Herceptin has helped many women. You may want to look at some of the studies on cannabis and join some alternative cancer groups. That way you can follow people yourself and see how they are doing. I'm following several women on cannabis oil right now. Some of the stories are inspiring and bring tears to my eyes. I believe there is hope.  I have good reason to believe it.  I think we have to change with the times and keep our eyes and ears open, and trust ourselves. Here's some studies on cannabis.

http://www.molecular-cancer.com/content/9/1/196

http://www.ncbi.nlm.nih.gov/pubmed/21566064

http://www.ncbi.nlm.nih.gov/pubmed/20859676

http://www.ncbi.nlm.nih.gov/pubmed/24373545

http://www.ncbi.nlm.nih.gov/pubmed/23394450

http://www.cancer.gov/cancertopics/pdq/cam/cannabi... 

http://www.pnas.org/content/95/14/8375.full.pdf+ht...

http://jpet.aspetjournals.org/content/early/2006/0..

.
"In conclusion, our data indicate that cannabidiol, and possibly
Cannabis extracts enriched in this natural cannabinoid, represent a
promising non-psychoactive antineoplastic strategy. In particular, for a
highly malignant human breast carcinoma cell line we have shown here
that cannabidiol and a cannabidiol-rich extract counteract cell growth
both in vivo and in vitro as well as tumor metastasis in vivo.
Cannabidiol exerts its effects on these cells through a combination of
mechanisms that include either direct or indirect activation of CB2 and
TRPV1 receptors, and induction of oxidative stress, all contributing to
induce apoptosis. Additional investigations are required to understand
the mechanism of the growth inhibitory action of cannabidiol in the
other cancer cell lines studied here."
Cannabinoids reduce ErbB2-driven breast cancer progression through Akt
inhibition
www.molecular-cancer.com.

Deblc

Thanks Lightandwind

lightandwind

Mrs. M, if you stand by what you said to Inga, then maybe you shouldn't have deleted your post. I certainly didn't ask you to delete it. I commented with my own observation.. This is the alternative forum. I really don't think she titled her thread to offend you, and it was not meant as a declarative statement, just sharing her own story...from an alternative perspective..here on the alternative forum.  

exbrnxgrl

debic,

Ah, that is where we differ. I don't envy those who operate by blind faith and I'm a very happy person, even at stage IV. As a matter of fact, despite this crazy dx, I'd say that in many ways, my life has been fuller and happier in the last 3 years than before. When I seek the truth or efficacy in things I don't expect perfection or iron clad guarantees, just reasonable evidence of reality/effectiveness. And, I always remember that there are no guarantees!

Caryn

nixie

now don't get me wrong I'm all for alt treatments. Having said that I really don't understand the hype about THC or cannabis oil as some call it. As far as I'm aware there has only been a single clinical study on it. It was in Spain. On 9 patients with aggro brain tumours. The tumours were injected 90% pure THC and all the patients expired. Yes they lived longer but they all died. Part of treatment yes cure no. But like the lady who said a few posts ago, people hear what they wanna hear. I sound like anti alt but I'm not. I somehow can't bring myself to like THC.

Momine

Nixie, what I have seen so far is a lot of tantalizing pre-research on cannabis, but little otherwise. There is no question that cannabis can be extremely helpful both for nausea and pain in cancer patients. Where I am really not so sure is on the question of whether it will do anything significant against the actual cancer.

The main proponent of cannabis oil is Rick Simpson and I patiently listened to his entire story (an interview). The story left me extremely unimpressed. The sum total of his evidence for cannabis as a cancer cure is that he had a spot on his skin that he decided was a basal cell skin carcinoma. He put some oil on it and it went away. 

However, there does seem to be some serious research underway and that is great. Let's hope they find something useful.

DivineMrsM

lightandwind, the reason I deleted my second post is because this is the alternative forum, and what I'd written was more a general statement regarding breastcancer.org, and not alternative specific. I was expressing views that veered off the topic so I chose to take it out. I certainly stand by my belief in what I wrote which is that sometimes newbies join the forum immediately professing to have all the answers without getting to know the members here who've been dealing with stage iv bc for years and it can be off putting. There was nothing cruel in the post whatsoever.  It was my choice to delete the post; I didn't do it because anyone asked me to.

When someone on any thread on this site posts something about stage iv, they are opening themselves up to get some views and comments from those dealing with stage iv, alternative or not, and even more so when posting with an inflammatory title, whether a provocative title is intentional or not.

It would be the same thing if I were to go on the stage iv forum and post a thread titled something like: "stage iv bc women who only use alternative treatment are missing the boat".  I'm pretty sure that'd bring out a response from the alternative community even tho it wasn't posted in the alternative section.

lightandwind

Diviine M, thanks for you explanation but Inga was on the alternative forum posting her views and experience about alternative treatment. That is what the alternative forum is for. 

I have read plenty of statements like " stage iv bc women who only use alternative treatment are missing the boat" on other forums AND the alternative forum so I don't get your point. The statements I have read by others aren't nice, and your post that you deleted about Inga wasn't nice either.

Regarding cannabis. There are over 20,000 publications with ongoing trials now everywhere on the medical uses of cannabis. Patients without time and other patients w/ cancer, are managing, effectively treating, and in some cases achieving complete remission with colon cancer, brain cancer, leukemia AND  triple negative breast cancer. It really doesn't matter if you don't believe it, or don't want to believe it. It is happening. 

BrooksideVT

I'm reading with interest generalized posts about alternative health centers in the southwest, and validated remissions from canabis.  Could someone please list some sources? 

inga6060

Ok, so I opened a can of worms.  Not my intent to offend anyone.  I wasn't clear about late stage cancer.  I meant the people who the Dr.s send home to die, because they have nothing to offer them.  Those people have nothing to lose.   Who cares about science at that point.  Has anyone heard if the placebo effect.  Dr.s actually learn of that in medical school.  If someone. Believes in something,, that's powerful.  That is where I am at.  Sorry, I wasn't more clear.

exbrnxgrl

inga,

Thank you for that clarification. Using alternative tx, after having exhausted all conventional tx, is a very different situation than your thread title suggested.