Interesting information for Alternative treatment advocates

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Sponsored by ?

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited August 2012

    They used questionnaires? Seriously?

  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2012

    UCSD is a top institution, but this seems like a pretty silly study.  If they're saying that those who NEEDED systemic tx (chemo) but took supplements (only) instead didn't do so well, I'm not surprised.  Maybe I'm not understanding them correctly, but I don't feel this "finding" negates the benefit of serious lifestyle (diet+exercise) modifications, plus the right supplements and CAM therapies as a way of improving overall health & survival, especially when used in an integrative way.  If they're just saying supplements alone won't cure bc (although we have no idea what stages or grades they're talking about), they're probably correct.  But I still think the way this is written doesn't really tell us much.   JMO...  Deanna  

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012

    Deanna - that is what they are saying. They are talking about women who should have had rads and/or chemo and chose not to in favour of alternatives.

    I hesitated posting this other article - WARNING not a nice picture shown in this study - but this sort of information needs to be shown.

    http://www.springerlink.com/content/r5k8v2873363x331/fulltext.html

  • purple32
    purple32 Member Posts: 3,188
    edited August 2012

    "All patients who did not have a surgical intervention within 8 weeks of their
    first visit received follow-up telephone calls. Alternative therapies were
    defined as any nonstandard treatments (e.g., herbal/vitamin therapies, diet ...."

    suzieq

     I cannot imagine you will find many people who will disagree that those who skip surgery in favor of a vitamin  are worse off.  That's plain common sense.  I am wondering if there are lots of these nonsensical studies and if I have contributed to any of them over the years with all I have donated to cancer research.   Not even sure what they are trying to prove . I'm sorry, but it seems ludicrous to even suggest there are  a large number of woman who would forego breast surgery when DX with cancer.   IF there are , I havent come across any of them in this site anyway.

     I see this as a study designed to scare intelligent, proactive women to stop seeking CAM, which I find disgusting.

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited August 2012

    I hope Rena is reading and thinking critically.

  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2012

    susie, that's an interesting study, although it would have been more interesting to me if they had subtyped the patients by individual stats, especially presumed stage @ dx, Her2 status, and also type of bc -- especially if IBC.  But perhaps the women involved didn't even get that far in the conventional medicine system.

    And while I'm not questioning that it could happen, and we've all heard of open, oozing tumors -- that photo -- especially that the lesion was 2 cm 11 mos. prior -- is hard to wrap my head around. 

    But I think the study is something everyone considering alternative-only tx needs to read and heed.     Deanna

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012

    If you actually read the study properly, you will see they also covered women who had surgery but did not undergo adjuvant treatment.

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited August 2012

    You can always check the Stage IV forums for women who did adjuvant therapies.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012

    Ruby - yes, that picture is horrible, which is why I hesitated posting the article, but it gives us insight into what poor Chillipadi went through.

  • purple32
    purple32 Member Posts: 3,188
    edited August 2012

    I also disagree about the 8 weeks post DX.  I'm not really buying it.  They didnt even schedule mine for app 10 weeks. They were in no rush and just acted like " BC takes yrs to develop...another 8-12 weeks wont do  a thing!"

    Additionally, I'm sure there are ladies with BC who are NOT YET Dx and then  by the time they get DX , several mos have passed , then  weeks more for surgery etc ... I do believe  the study is nothing but scare tactics , and I am surprised it has found its way to a thread that is supposed to be supportive of Alternative Medicine. 

    Perhaps in belongs in a thread where it will be better received. Doesn't look tlike this thread is too impressed by the drama.

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited August 2012

    The Stage IV forums document how women are complaining of BOTH the disease AND the agony of treatments after "doing everything right."

    So sad. My heart goes out to our sisters.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2012

    Although I agree that study cited has some holes, stage IV is a different ball of wax than earlier stages. Not all stage IV women suffer the "agony of treatment". As a matter of fact some lead remarkably normal lives for quite some time, myself included. The course of this disease can be very different for each woman at each stage. We all need to take individual differences into consideration regardless of what tx path we choose.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    SusieQ, are you addressing me ? because I don't see any posts by Maud - looks like she has pulled the plug 

    BTW, has anyone heard from Chili ? 

  • kayfh
    kayfh Member Posts: 790
    edited August 2012

    I have to second exbrnxgrl's statement. I have had some nasty experiences on my "bad trip", but for most of the time since diagnosis I have lived a rather normal, healthy life.

    The usual milestones have passed, new granddaughter to go with her awesome 10 year old sister, my two daughters in stable loving relationships, my husband and I are still in love, I turned 60. When I was 30 I never dreamed I would be this old. When I was diagnosed at 57, I didn't expect to reach 60. I used CAM to help alleviate the SEs of the allopathic treatments I took to try to get clear of this disease for as long as possible, with the least negative effect on my QOL. Notice, I said to alleviate SEs of treatment, not instead of treatment. There is a time and a place for allopathic Medicine and that holds true for Complementary Medicine.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012

    Ruby - if I search for Maud all of your posts come up, so I guess you changed your name.

  • purple32
    purple32 Member Posts: 3,188
    edited August 2012

    I agree exbrnxgirl

    Perhaps this should have been posted in the Stage 4 forum.  Sadly, I do think that is another whole ball game. .... and where any of us could end up.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Well, like I said SusieQ, I do not see Maud posting on this thread, therefore no reason to address her, unless ?  

    My parents taught me to be polite and address people by their proper name.  No one here knows my real name except for the one I choose to post under and that is Ruby.

    I call you SusieQ and therefore will ask that you extend the courtesy, tks

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012
    Purple - IMHO this is the place for this to be posted - newly diagnosed women can/have been lead up the garden path by some of the information posted on this forum and it is important to present both sides of the story.
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012

    Ruby - I have changed my posts above, but you cannot deny your former screen name here was Maud. You were happy to be addressed by that name in the past - why not now?

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2012

    Kayfh,

    I am doing really well with conventional and complementary tx (diet, exercise, supplements) to help with se's and, hopefully, prevent progression for as long as possible. For the record, none of my conventional tx has been agony even before I started tweaking it with complementary. This works well or me. My onc knows about and supports it, although she is not crazy about supplements, but celebrates my taking my own health by the horns and being an active participant in my tx.

    Caryn

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012

    Caryn - I'm glad complememtary treatments help you - I'm a big fan myself.

  • purple32
    purple32 Member Posts: 3,188
    edited August 2012

    Suzieq

    IMHO, I  just dont feel this is the most accurate  'other side of the story' , nor do I quite understand your crusade to uncover Ruby or CAM, frankly.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2012

    Purple,

    Got to jump in here with respect to screen names. There is nothing to uncover. Regardless of how many times or how often you change your screen name, your posts remain as do responses to your posts. This makes it very transparent and very easy to see that someone who may have been Lil yesterday is Pat today and could be another name next week. Sometimes people change their screen names to eliminate personal or identifying information for example, Lucy G in Tuscon. But to change from one non-identifying name to another is not a very good way to change your identity on these boards. Pretty easy to figure out who you were! Caryn

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2012

    Purple - I have no problem with Complementary treatment at all. But I do have trouble with alternative treatment which is unproven and dangerous.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Purple, it does look like SusieQ is on a crusade, perhaps she is trying to divert the subject of her own thread because like you so aptly said, we are not too impressed with the drama Lol

    It really befuddles me how some people pick and choose what serves them best and totally ignore the fact that you and I both, as well as most sisters posting on the alt threads, have gone through the A to Z process, while some of the most anti-alternatives have not even had chemo or rads or have turned down hormonals.

    I'm scratching my head in disbelief at this nonsense 

    Thanks Kb.... 

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited August 2012

    Ruby and Purple,

    I don't get why people feel the need to be evangelists for their own treatment unless they are terribly insecure that it will work. It boggles the mind unless they have too much free time.

    The evangelists surface only to stir the pot for their own threads and make fools of themselves. They claim to be "saving" all the stupid people. Then they begin stalking people like Ruby--which is against the rules and a reportable offense.

    Good luck to all. This silly pot stirring only makes us and the newbies more committed. Blessings to all.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I love my like-minded sisters Smile NattyGroves, you took the words right out of my mouth, well, almost, the word that came up was missionary.  Evangelist is more appropriate though, as I would hate to think of myself as one of those poor little Africans whose pictures were distributed when we were kiddies in school

    Was kinda hoping that the stalking would not go unnoticed by the mods. If they are reading, I would be most grateful if they reinstated my PM privileges after the system booted me out again for having my posts "community deleted".  Three posts in 24 hours, I can't even imagine all the reporting power this must represent, more than 30 button hits ?  Wow, what devotion !!

    Yup, definitely something in the wind 

  • purple32
    purple32 Member Posts: 3,188
    edited August 2012

    exbrnxgirl

    I know all that . I simply dont see the need to call someone out on it! Purpose ?


    I for one, have never changed my name, btw.

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