Anyone out there her2+ and not taking herceptin?

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apium
apium Member Posts: 70
edited May 2017 in Complementary and Holistic Medicine and Treatment
Anyone out there her2+ and not taking herceptin?
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  • apium
    apium Member Posts: 70
    edited November 2007

    I'm stage IV with liver and bone mets.  I am thinking about not taking herceptin and would like to know if there is anyone out there not taking herceptin and maybe knows of something that can suppress the her2 gene as herceptin does.

    I know olive oil is suppose to work like herceptin but I'm afraid to count on it for my life.  

    I would like to stop herceptin because I'm just not convinced it is the only thing out there that will suppress the her2 gene.  I also believe the price of herceptin is ridiculous!  My insurance only covers a portion of the cost and I don't qualify for free herceptin. And of course I don't like the side effects.  Heart disease run in my family and I suspect it is a matter of time before I would have to stop it.  And I am really against trying new drugs that don't have a few years behind it.

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  • Lhunhen
    Lhunhen Member Posts: 96
    edited November 2007

    I was HER2+ and didn't take Herceptin.  I'm 1 1/2 years out now and doing great!   What I do take is Evening Primrose Oil.  Here are a few articles that show that EPO cuts the levels of HER2 gene.

    http://www.medicalnewstoday.com/articles/33019.php 

     http://www.eurekalert.org/pub_releases/2005-11/nu-poc102705.php

     http://www.cancerline.com/cancerlinehcp/6096_18655_2_0_0.aspx

    Ultimately you have to make your own choice about taking the drug or not but I hope this helps you some.

    Cathy 

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  • cp418
    cp418 Member Posts: 7,079
    edited November 2007

    This is another medication for Her2+ approved for mets.

    http://www.tykerb.com/

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  • Jenniferz
    Jenniferz Member Posts: 541
    edited November 2007

    Cathy,

    Is Evening Primrose anything like a soy product?  From what I read, it could help with pms discomfort, sore breasts, etc. I did see where it could also be beneficial in fighting Her2. Am now post menopausal,  I'm interested in taking it, but does it counteract with Femara?

    Thanks.

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  • Lhunhen
    Lhunhen Member Posts: 96
    edited November 2007

    Jenniferz,

    I"m not sure what you mean by "is it anything like a soy product"?  It's not a soy product as far as I know.

    I also can't help you with the Femara question.  I'm not on that but you could ask your doctor.

    Sorry I could not be more help.

    Cathy 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    So, where do you buy Evening Primrose Oil?

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  • Jen44
    Jen44 Member Posts: 631
    edited November 2007

    You can get it at any vitamin or health food store. 

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  • Lakonia
    Lakonia Member Posts: 29
    edited November 2007

    Cathy could you tell me how much evening primrose oil  you take each day

    thanks

    Lakonia

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited November 2007

    Another one here who would like to know how much to take.  I'm stage IV, er/pr -, so I certainly could use any help I can get!

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  • Lhunhen
    Lhunhen Member Posts: 96
    edited November 2007

    Sorry to take so long but i'm not getting the updates for some reason.

    On the dosage of EPO I take a day.   I take 2-3 of them a day.  I also take it for Rheumatoid Arthritis.  I'm not sure if I found a dosage recommendation for taking the EPO for the HER2 or not.

    Cathy 

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  • Eileen73
    Eileen73 Member Posts: 8
    edited July 2013

    I was wondering anyone out there who are er+pr+ HER2+ and did not use Herceptin. Please share alternative treatments that you did.

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  • Maziel58
    Maziel58 Member Posts: 11
    edited July 2013

    What about medical marijuana/oil?  You know, I remember back in those old days when the yew yielded up the wonder drug Taxol.  Why not research every promising plant - like your evening primrose? 

    Look up native plants and native uses for those plants and take it seriously.

    Anyone here ever go to a traditional Chinese medicine shop?

    May

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  • barbiecorn
    barbiecorn Member Posts: 437
    edited November 2013
    I was Her2+ and had bilateral mascectomy in feb. of 2012...refused Herceptin, chemo and tomoxifin...I have substituted tomoxifin with DIM and Myomin and I take olive oil for her2+ and I am doing alterntive treatment, foods, juicing, supplements...so far, so good...hope and pray I stay this way.
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  • gemini4
    gemini4 Member Posts: 532
    edited November 2013


    I have read that evening primrose oil should not be used by women with a history of ER+ tumors. It's frustrating to try to make sense of so much conflicting information out there!


    Edited to add -- EPO probably isn't an issue for those with a history of hormone-negative tumors ... So my apologies if what I said was irrelevant to you all! :-)

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  • Oomawerd
    Oomawerd Member Posts: 16
    edited May 2017

    I am torn between Tch chemo. Scared to death if it actually.

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  • Oomawerd
    Oomawerd Member Posts: 16
    edited May 2017

    I am torn between Tch chemo. Scared to death if it actually. What kind of olive oil, disage and what is DIM?


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