Survivors who have used only alternative treatments
Comments
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I don't recall Dave and it would be inappropriate to sell stuff on here. There are cooks that is for sure. If I crack up each time I see the shaker weights and Reebok shapeup shoes ads..lol
Sam you are right I appologize. Just hearing people tell Nanay she was more than one person than all this Dave and Luis stuff just got me wondering if the same could be true in reverse. Those references were just as scary... Usually those who accuse others are the ones who do it themselves and I should have just let it blow over. All the bickering on this forum is starting to take a toll on me and I expect better of myself. I should not let others change the good person I am. I just find it so hard to understand such rigid opinions. I always say what is right for me is right for me but that does not mean it is right for someone else. We can all learn from that. Just because it works for you does not mean you must impose it on someone else as it may not work for them.
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"Usually those who accuse others are the ones who do it themselves "
you are ABSOLUTELY right. Sorry you've had trouble on this thread. .. and I'm sorry if I've contributed any negativity myself. I like to be in the middle myself.. 1/2 one side and 1/2 the other.. like a republican who votes for dems or the opposite.
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I will be blunt, dead people cant answer , and there are some alive people that can cause more harm than good. Some that pretend that had cancer and never did.
I have worked in a cancer center, attended Support groups and I have never met a real survivor of alternative treatments; I have seen patients that died and were too late for chemo or radiation or surgery.
It is like Russian Roulette, if one doesn't take charge of real treatments might be too late.
I am glad I asked for the most aggressive treatments I could get, my first grandchild was born the day I was diagnosed, now at 16 she is in College, has a brother and both my kids are adults.
Many women die as warriors fighting and their families know they were heroes in this battle. What ever you chose , do it consulting your doctors.
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Dreaming - that is wonderful you have survived so long and so well. I just hope you are not insinuating that women who make a decision different than yours are somehow lesser warriors and heroes to their families? We have tread lightly here...I see you are a stage 1 as I am and what is agressive treatment for us is far different as those for more advanced cases. I am not being combative, just saying it could hurt someone's feelings who know they have fought the battle that was right for them. Nobody is better or worse than anyone else fighting this &hit. It is a horrid thing that none of us should have to do.Off subject but in high school there was a young man that was the poster child on how not to live your life- drugs alcohol, you name it he was into it. Several years later he tried to straighten out his life and did, a very short time later after moving in with his family he was killed by a train. Now keep in mind, hardly anybody liked him in high school, he was really a whack job- but as humans, some of us were indeed thrilled he had straightened out his life. One of our close friends refused to go to the funeral and said "So he died, I have no remorse". I think that remains one of the most horrific things I have ever heard in my life- right up there with "Annette, you have breast cancer". For the guy who said it explained it was because of how this other had lived his life and he had been straight for such a short time- that he somehow wasn't worthy of respect or honor. That's where I am coming from-his smugness disgusted me and I have never liked him since- even though he is a dear friend of my husband's. It was vile action that has stayed with me all these year-I was shocked.
I get opinionated with the best of them...but I sure would not want a greek chorus reviewing all of my choices and letting me know just how short I came up and as a result...that I am lesser.
None of us are and we have no idea what any particular individual is doing or thinking or living in their lives. We could hurt someone badly at the exact time they could not handle it. Anyway, I will climb off my soapbox now...
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Perhaps tumeric can be a preventative, but it appears the jury is really out on dosage:
American Cancer Society:
"Human studies of curcumin in cancer prevention and treatment are in the very early stages. One study of 15 patients with colorectal cancer was done to find out how much curcumin they could safely take, and whether they could take a dose large enough to be detected in the blood. The patients were able to take 3.6 grams of curcumin without noting ill effects. At this high dose, some curcumin and its products were found in the blood. Lower doses may work for the stomach and intestine. Even though it does not absorb well into the body, it has been shown to absorb into the colon lining and into any cancerous tissue in the colon. The researchers recommended that the high dose be used when curcumin is tested for effects outside the intestine. Other small studies have found people were able to take up to 10 grams per day for a period of a few weeks without noting problems. Some researchers are currently working on ways to increase absorption of curcumin by combining it with other substances. Further clinical trials are needed to find out what role, if any, turmeric and curcumin may play in the prevention or treatment of cancer."
And from University of Maryland:
Cancer
There has been a great deal of research on turmeric's anti-cancer potential, but results are still very early. Evidence from test tube and animal studies suggests that curcumin may help prevent, control, or kill several types of cancers, including prostate, breast, skin, and colon. Curcumin's effects may be due to its ability to stop the blood vessels that supply cancerous tumors from growing, and its preventive effects may come from its strength as an antioxidant, protecting cells from damage. More research is needed. Cancer should be treated with conventional medications; never rely on alternative therapies alone to treat cancer.
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Dreaming - you have said what I have been resisting saying all along. It's all very well to go with alternative treatments to start with if that's your choice, but when you one day get the bad news you are Stage IV - you can't go back and change your choices. The short term side effects of chemo are nothing in the long term. I can remember crying for 10 days straight after the first treatment, the subsequent treatments were much better with drugs to help alleviate the SE's. Now, a year on, it's all just a bad memory and I feel really well and happy. Happy that I've done everything I could.
Sue
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...funding for clinical trials are next to impossible to get...they are not able to be patented. I talk to researchers at the universities...pharma now funds nearly 50% of all clinical trials ...schools will make a profit if it turn into a viable drug product- now mind you- I am not against pharma at all...I am just saying..the only funding for the alternative trials comes from NIH and right now their focus is on vaccines- which is expected in the long run to be the first course of treatment for a number of cancers...great studies..but still a long way from fruition...yet, if some has not succeeded on any other treatment, they are often able to bypass typical protocol for experimental drugs...which I totally believe in...there are a number of good drugs that have not made it through the clincial trial process yet that should be available if there are no other options
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WOM, some women did have just a lumpectomy back in the 70's. It was usually called a partial mastectomy at that time rather than lumpectomy but the procedure was essentially the same - removal of the tumor and an area of normal tissue surrounding it. Although it wasn't the standard of care back then, there were some doctors testing it out and I'm sure if you do a journal search you'll find some reports on it.. Just as happens today though, some women refused to have the radical mastectomy or even a simple mastectomy and so they were given a partial mastectomy AKA lumpectomy.
And before anyone gets their feathers ruffled - I'm not defending this "dave" person or whatever story he's telling. I'm just stating a fact - lumpectomies were done back in the 70's.
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There is a thread about tumeric on the alternative topic, started March 5, 2011.
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Britchick~~ why thank you very much and you are most welcome!! Hope you have a spectacular weekend!!0
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Beautifully put Nerida. I too check and re-word my posts till I think they won't offend. Many things I want to discuss just don't get said in case someone objects to my unconventional views or treatments. I was watching a documentary on how girls use exclusion, mocking and ganging up to bully other girls at school and pre-school and thought of this thread.
It's not that others offend me, they're perfectly entitled to their views and their concerns, rather I can't be bothered getting into the same discussions over and over. I know the conventional views already, apart from the excellent studies and statistical links that I appreciated. Why can't we just discuss alternatives on this alternative section without the constant "interruptions"? This thread should be a few pages long but instead it's too hard to use as a reference due to all the arguments.
So I'll probably, with great reluctance, move to another forum, where we'll be in our own area with no one to keep bothering us.
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WOM, if you think I am condemning you or my mother because of your decisions I am sorry. But, I do think it is okay for me to speak as the daughter of a woman who died from bc. Would she have died had she dealt with her cancer more aggressively, maybe. Is the likelihood much greater that she would have survived had she taken a more proactive approach, yes. Is it certain she would have survived? No. My mother has been dead many years now. But, shortly after her death (about 8 months), I woke up crying because I couldn't figure out why my mother didn't talk to me anymore. Then, once I was fully awake, I remembered why.
I myself have been diagnosed with breast cancer. I have a 5 year old daughter. For me, the possibility of not being around to raise my daughter was the absolute worst part of the diagnosis and certainly has caused more suffering in me than any of my treatments did. I have not nor would I condemn any mother faced with a life-threatening illness or one facing a terminal illness. The possibilities I consider are absolutely terrifiying to me as a daughter of a woman who died of bc and as a woman diagnosed with bc who is also the mother of a young daughter. I know that my mother suffered a lot.
I also hate that bc is any part of my daughter's childhood. I get obsessed sometimes about her experience of it, which I have tried to minimize in every way possible. Even if I am okay, the thought that anything related to bc might be among my daughter's first memories really disturbs me. It has been a few years since I have worn a scarf, but the other day she made a comment about someone wearing a scarf, with the added caveat that this person wasn't sick. Huh?
No one is telling you, WOM, that you shouldn't pursue alternate therapies. I think what people react so strongly to is the possibility that you reject your best shot at treatment. As someone up thread mentionned, these are life and death decisions with a lot at stake. To say that it is just a matter of respecting decisions or that people are pushing conventional methods for any other reason besides concern really trivializes things. To declare that one's decisions is the best purely on the basis that one has made that decision doesn't make any sense. The best decision for you is one that will give you the best chance, that will have the greatest likelihood of achieving what you want. WOM, you have been diagnosed with a type of bc that is very high risk for recurrence. You are also in a category for which there are a lot of treatment options. You are probably in a category that has the most to gain from conventional treatments. Does this mean that if you choose conventional treatment that you will be put into complete and permanent remission? No, you could choose conventional treatments and experience complete failure, partial failure, some success .... But, why count yourself out before getting to the gate? Why the either or attitude towards conventional/alternative treatments? Why accept all the anecdotal stories of the failure of conventional treatment and not the ones where the treatments have worked (which are not purely anecdotal anyway since people have provided you with a lot of studies as well). A lot of people have been making a big point of the uncertainty of conventional treatments, but that is really the reason why in high risk cases they should be pursued. You really do not know how you will respond. While I wouldn't take anything for granted in cancer treatment or have any unrealistic expectations, at least be open to the possibility in your decision making that conventional treatments might work for you.
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Poptart - well said!!! I just find it incredible that anyone with HER2+ve bc would consider forgoing conventional treatment - especially herceptin. I am so grateful that it is now available to early bc patients like me. The herceptin part of the treatment was certainly the easiest - no SE's whatsoever except an occasional runny nose.
Sue
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alrigh poptart now that I have seen you are genuinely concerned with WOM...I will post back in this thread.. just do away with the mocking and insulting remarks as much as you can.
I came back here not to prove I am right or to prove anything.. but to help WOM make an informed decision..
for starters.. can someone help me dissect a clinical trial on First line Herceptin monotheraphy? and also a clinical trial on curcumin for pancreatic cancer?
I have seen WOM's posts on other threads and she seemed to be looking for the same answers-- it was just lost in the rambled arguments..
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I think before we climb all over each other in anger, we should simply acknowledge that we really have so little information we know to be absolute fact. We all need to take a cold hard look at the organizations and institutions supporting research on this disease, and I think it's really true that a level of complacency has sunk in, at least among the non BC suffering world.
I don't know about all of you, but I'm scared. I mean, really, freakin' scared. I'm moving on with my life after a grueling year of treatment for Stage 1 under the age of 40. The future looks promising and terrifying all at the same time.
I'd much prefer to be insulted than left in the dark regarding information. Deep down, I think every person who bothers to post on these forums feels the same.
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LtotheK,
I beg to differ. we can still discuss without arguing and without insulting.. I would always try to take the ideal path to discussion.
am sure you can do it.. am sure you can tell your story and cold hard facts without insulting people..
you owe it to yourself.. you know that stress agrrevates cancer-- so please let us not provoke each other to anger..
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I'm more than sure I can do it, Nanay, I have never participated in insults on this board. I respect and care for women too much to do that.
You may not like the content of what I have to say, but I am not into personal attacks. Perhaps that is the issue: differing opinions are read as smear campaigns. Respect is also about taking the risk to say what needs to be said.
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LtotheK:
Your post must be the wisest one I have read in a loooonng time (and yes, that includes my own posts).
This thread would not have stirred up such high emotions if what you said was not true. There is no certainty, no matter how much we want to get to a place where we have something to hold on to...
And the more aggressive people get in stating with authority that their treatments choices are the only ones that will save their lives and other people's lives, the more obvious it becomes that they are just absolutely desperate to be right (whether they have chosen "conventional", "alternative", or "in-between"); and whether they themselves realize that fact....
and Nanay, you wrote: "...We can still discuss without arguing and without insulting...." I beg to agree LOL
. Indeed, we can. But can we? 0 -
And suepen, you wrote:
".......we are talking about HER2+ve tumours here - your article is not relevant....."
No, suepen. (1) my post was essentially continuing a discussion with different people with approximately "my" type of pathology [ER+, PR+, HER-]; (2) I thought we were discussing breast cancer in general, on this forum, aren't we?
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I think poptart nailed it. When you say all choices are valid you are also saying that no choices matter, that the substance of a choice is irrelevant. A lot of us feel some sense of urgency with WOM because her cancer is so aggressive and advanced. Its not anger, and its not insults. Its fear, for her and her family. I realize she has made her decision and I've pretty much given up since she takes all the studies and more rational arguments and feels attacked -- not the point. But I do think those of us encouraging her to do BOTH conventional and alternative treatments are concerned for her.
And poptart I think when we watch a parent die a terrible death we fear that illness for ourselves, its only natural that we bring that baggage with us. My mother died from brain cancer and don't get me started about brain cancer. Your daughter will be fine. You aren't your mother and she doesn't have your baggage.
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hi MOC,
if we can just focus on the studies -- we will be fine. all of ou personal information which we have shared here are being picked upon many times.. if you can just drop it.. we will all be fine..
LtotheK,
I cannot differentiate your posts from the others.. when I said you can try not to insult-- I mean it for everyone.. TRY just TRY!! it would be good if we can all start from an ideal scenario and start our discussion from there..I agree my mother being post-menopausal may not have the same risk factors as WOM-- she probably have higher risk factors.. but then her decision seems to be well thought of-- and just like me-- we were both open to influence about the Her2+ status, until someone (cannot name who did what) started implying that we are either being a bad daughter/mother for going alternative...
yazmin
if you still think it cannot be done.. then maybe we just drop this conversation and leave each one with their own decisions.. I do not care whether we (alternative) is wrong and they (conventional) is right or the other way around.. I want all of us to find a common ground.. and probably that common ground can help us ALL to find the missing link
I am just begging for some room for dialogue-- no insults, no mocking, no implying that we have been a bad daughter or mother for being where we are now..its just differing views and opinions but all our intentions are good..
PLEASE just do away with the mockery, bullying and insults.. it has room in high school but in a board full of people being scared of death-- it should not be given room.
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I created a different thread for the purpose of discussing the pros and cons of alternative and conventional treatment for ER+ Her2+ Stage 2/ Stage 3 BC.. please post there..
just leave this thread for those who really think they have survived using alternative methods..
we have different definitions of "survival" anyway..
this thread is not asking for statistics of which one works better.. just a question on who thought they have survived using only alternative treatments..
leave it that way, there are other threads for discussion on merits/ demerits of alternative vs conventional..
this is my stand-- if you still want to continue doing what you are doing in the last 35 pages, its up to you.
I have already stated my response for this thread.. and it will remain that way, until I have proven otherwise.
If ever I change my position-- then I will post it back here. PROMISE!
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I say this to encourage more rigor, not to criticize! What I'd love to see is more links to studies on naturopathic and holistic alternatives.
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Great idea Nanay!
I also suggest that we try to leave this as WOM's thread and post about her specific situation and perhaps move the discussion about BC response to treatments in general, alternative and/or conventional to another thread as well.
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Sheila! Your comments are right on! I have had the same thoughts; being afraid to offer the opinions of my friend who is against traditional treatment (even though they are not MY thoughts necessarily I know I would be blasted) It is too bad. This is an alternative treatment site - those who don't believe in that should not even be on the site. It should only be for those for believe in that and would like to discuss treatments, ideas, suggestions with others who feel the same way.
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What is the name of the thread, Nanay?
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srbreastcancersurvivor -- the title of this forum is "Alternative, Complementary & Holistic Treatment."
"Complementary" and "Holistic" do not exclude "conventional" treatments.
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I'm with you AnnNYC. I myself am very interested in complementary and holistic treatment. I get annoyed when I'm not welcome because I did chemo, currently doing Als and would do it again in a second. For once it would be nice if instead of telling me these treatments are going to kill me, not have any effect on my survival, my surgeon is a butcher (yes I have had that posted too) etc. and maybe discuss what I can do in conjunction with my path.
Why is it all or nothing? Can't we do both? Doesn't "Complementary" include all these approaches? I don't think it's wrong of those to suggest WOM to consider doing both.
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I agree with AnnNYC and Lago! WE can do both. I currently take Arimidex but also eat healthy, do Yoga, take supplements etc.
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Wow thank you naynay for the wise words of learning how to have a kind discussion without aruguing I saw the thread taking a nice turn. I have no problem reading and studying all statisitcs.
MOC I am not sure if your realize that certian language can be seen as insulting but a simlpe word. When referring to me you say "when she takes all the studies and more rational arguements and feels attacked". I feel attacked by the way rational is used as to imply my thoughts/studies are irrational. What is the benefit of our discussion from this statement? Had you simply left this sentence out your paragraph would have seemed more like one of genuine concern. Words can really effect the way a tone is read. I find myself having to reread to see how it may be taken as to not offend others. After 52 pages I did get a little frustrated
Human I admit! lol If I said MOC is not listening my rational statistics I wonder how you would take that one? It implies right and wrong and in BC each person must choose what is right for them.
I think that before any of us jump in and suggest what someone what they should do and MOC you note how we are encouraging (which is a much better word choice not the one usually used) to do both I say PLEASE before those words come out make sure you get the whole picture of that person. I have SEVERAL things that make me personally more at risk with Chemo that I doubt any woman on this thread has. So I need to take the 1% much more at heart. If I did chemo and I hit that 1% just curious what would be said then.
My questions are not an attack please just understand I want people to realize more needs to be asked with BC patients before we start saying what is best.
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