Where are the tri-negs!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    I would like the trial site.  Clinicaltrials.gov does not show any. This website shows all trials in progress or completed. All FDA approved trials must go through this trial website.  One trials does not make any proof we need multiple trials to show that the trials data was used the same.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    I posted a while back about the negativity and well just down right mean attitude of some.  I have honestly stopped coming on to the trip neg board because its alot of attitude, and not good attitude from some people.  Maybe its stress or burn out, I dont know and I dont even suggest that I do know.  We all have it so hard and we are all grasping at anything to get us through this.  I want to believe my doctor when he tells me that Avastin, he believes has helped me from getting mets.  Is it 100%?  well of course not.  Does others think differently?  sure.  But I dont think that underminding what someones doctor has told them and basically treating them like they are idiots and so are their doctors is just mean. 

    I know my post wont be a popular one because some of you are long time posters but seriously reread how you post things...look at how it comes across.  Maybe you dont mean to be combative but you are.

    With this said, Im going to go now before I say any more

    Teresa

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  • tibet
    tibet Member Posts: 545
    edited July 2009

    I agree to both sides and I also agree that it is sometimes better to be a little more careful in writing what the doctor says because we all take what doctor says seriously. If any information which is not quite the exact what doctor says but blend our own idea in but telling others as doctors says, it may be a little misunderstood by others. I appreciate we all can be honest and direct in discussion boards like this one. So please, no one should take our discussions or opinions as offending or personally but just sharing of information. We are supporting each other and sharing information. It is important to sometimes get the facts right instead of blending personal idea with what doctor says and it is ok if someone corrects it. I don't take this personally but rather appreciate the different opinion.....

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    What is the probably asking for backup research if someone is posting information as fact and their doctor know more than our doctor's.  This is a very common thread on this site with very little research behind this.  Many leave other's who are not more educated to second guess their treatment all the time.  I will not apologize for asking someone to post the research they are wanting other to except as a better treatment option. 

    Yes I'm a long time poster... I started this thread.  I will not be silents by a few who don't want to hear facts about where research for TN and treatment options because they want only "feel good" information. Theresa- you will not silent me. Many ladies want to learn from my long history and pm daily because of people like you will not let a open discussion take place. 

    As noted someone edited their post after I ask the question as where the info came from.  This was verified by another poster.  bottomline is there is no proof that Zometa has any vaule for TN and other than protect from bone loss and not stop mets.  This was the whole point of this discussion and the facts came out.  This is the value of someone willing to do the research.

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  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    thank you, sftfemme65 and newalex. i agree wholeheartedly and that's why this is my last post on this board. i respect every member of this forum, but it's absurd when one is attacked because one shares what his med onc recommends, and it's absurd to think that anyone has proprietary ownership of this thread and therefore knows more about TN. unless you're a doctor or certified researcher, then we're all in the same boat here. i take research very seriously, especially about TN, and i have leaders in the field sending me info as soon as pertinent clinical trials are announced or come up with final conclusions. my diagnosis was only 10 months ago and i am not a physician. all this is new to me, but i have access to the latest information from my patient advocate at UCSF and others in the field. this is the info she sent me yesterday. i have the entire reports if you want me to PM them to you. they're way too long to post here. also you can google the essentials and see the entire reports. best of health to everyone. 

    1.
    SABCS 2008: Zoledronic Acid Has Direct Effect on Breast Cancer
    Zosia Chustecka
    December 12, 2008 (San Antonio, Texas) - New data suggest that zoledronic acid (Zometa, Novartis) has a direct effect on breast cancer. The bisphosphonate is currently marketed for osteoporosis and bone metastasis, but there is growing evidence to suggest that it might also have a role to play in breast cancer.

    Preliminary results from a clinical-trial subset presented here at the 31st Annual San Antonio Breast Cancer Symposium show that when zoledronic acid was used with chemotherapy in the neoadjuvant setting, the combination led to a significantly greater shrinkage of the primary tumor than was seen with chemotherapy alone.


    2. AZURE
    Disease site: Breast Cancer
    Treatment Modality: Chemotherapy
    Status: In active follow-up
    It is the aim of this prospective, randomised, open label, parallel group trial to determine whether adjuvant treatment with zoledronic acid with (neo)adjuvant chemotherapy and/or (neo)adjuvant endocrine therapy is superior to (neo)adjuvant chemotherapy and/or (neo)adjuvant endocrine therapy alone in improving disease-free and bone metastasis-free survival in women with stage II/III breast cancer. This international trial opened to recruitment in September 2003, and closed to recruitment in January 2006 with over 3,300 women randomised. The AZURE Trial is coordinated centrally by the CTRU - University of Leeds. ICR-CTSU acts as a local trials office for 25 sites (600 patients) and is responsible for data management, monitoring, site initiation and the day-to-day running of the trial. Follow-up continues for the next 10 years. AZURE is supported by the NCRI Breast Clinical Studies Group.
    Chief Investigator: Professor R. Coleman, Sheffield University.
    Sponsor: University of Sheffield

    3.
    Reduction in Bone Relapse and Improved Survival With Oral Clodronate for Adjuvant Treatment of Operable Breast Cancer

    Trevor Powles; Alexander Paterson; Eugene McCloskey; Phil Schein; Bobbi Scheffler; Alwynne Tidy; Sue Ashley; Ian Smith; Lars Ottestad; John Kanis
    Breast Cancer Res. 2006;8(2) ©2006 BioMed Central, Ltd.
    Copyright to this article is held by the author(s), licensee BioMed Central Ltd. This is an Open Access article: verbatim copying and redistribution of this article are permitted in all media for any purpose, provided this notice is preserved along with the article's original citation.

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Thank you for addressing the negativity.  I haven't posted much, but have read through many posts trying to find information on TN.  I don't think that there is any problem with asking someone where their information is coming from, but the tone is very combative.  I would like to be able to have discussion without the fear of being attacked.  Obviously if there is any information about possible treatment, it's worth bringing it up with our onc to get their opinion.  Hopefully we all have doctors that we feel comfortable enough with to trust their treatment plan, and they are open enough to answer our questions about possible new treatments.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    These post again do not address TN and Zometa!  This research is on hormone+. If you want to take it find.  But other need to no the value of this treatment.

    This is not about attacking anyone's doctor's.  This is about the whole thing that continue to be in this section that my treatment is better than your.  This is not done by myself but by many who post as if they have doctor or treatment that is some how perfect for TN.  I'm here to tell ladies to do their own research and to realize there is NO set protocol for TN at this time. New members to read all post and do your own research and ask your doctor and do like many of us do and get a second opinion.  With our disease research is slow and we must work at finding the best things for us and what is being found out by the ladies ahead of us.

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  • tibet
    tibet Member Posts: 545
    edited July 2009

    Although Zometa probably just helps to prevent bone losses but it indirectly helps to prevent bone mets because bone losses make bones easier to be attached by cancer cells. It is proven Zometa helps ER+ because ER+ tends to mets to bone while ER- do not. But it does not mean, Zometa does not help ER- just because there are no study done on it yet. but some ER - may have bone mets risks like ER+ and so logically having zometa may help to prevent that by making the bones hard and prevent losses. That's why my doctor gave me zometa or some may recommend it.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    Floridalady,

    I was never trying to silence you, I was just saying that maybe if you weren't so combative in the way you speak to some people they might be more open to what you have to say.  There is no problem asking for the research info its the way you did it and everything leading up to it.  Just like your comment after my post.....very mean and nasty.  I feel sorry for you that this is how you need to communicate with others.  I have never attempted to stop a open discussion about anything.  I again just think its sad that there is so much negativity and mean attitude going on. 

    Im sorry for those that feel they have to leave because of this kind of thing.  Dont let someone who upsets you on here run you off.  Just ignore the posts that are not constructive. 

    Teresa

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  • bar62
    bar62 Member Posts: 321
    edited July 2009

    Oops, I was coming over to visit, read about Zometa/ bone loss and TN. 

    .NOT.

     take care everyone,

    mina 

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  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited May 2013

    been years seen i've been on this site and I still remember this boohaha. Words get twisted, people take sides, etc. 

    that's why it's been years since I've been at the site

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