Feedback on Tamoxifen

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sduch1
sduch1 Member Posts: 104
edited June 2014 in HER2+ (Positive) Breast Cancer


Hi-


I am sure there are many threads out there on this. I'm just looking for quick advice on your experience with Tamoxifen. You would think after going through AC and TH, I would feel invincible, like I could do anything, but instead I am nervous.


My story is that I am ER- and weakly PR+. The drs at MGH originally said no Tamoxifen for me when I was first diagnosed but are now saying, a year out from chemo and a few months out from Herceptin, that I should take it. The original tumor board when I was diagnosed said "no." A more recent gathering of the tumor board for a patient similar to me said "yes" and my onc said "whaaa?" She brought my case to the top endocrine guy and he confirmed "yes." Although I swear this happened almost 2 years ago and he said "no."


So, I think part of my anxiety is the fact that there are such differing opinions on it, even at a major cancer center. And, I thought I was done but now that they are strongly saying "yes" it worries me that I have delayed taking it by a year.


I am just wondering if there is anyone with a similar diagnosis (I know I've see you out there) and what your onc is saying about Tamoxifen. And, in general how anyone who is on Tamoxifen is tolerating it.


Thank you!

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  • sduch1
    sduch1 Member Posts: 104
    edited November 2013


    I wish Herceptin came in a little daily pill that I could take for 5-10 years!

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited November 2013


    I don't have the same diagnosis but am on tamoxifen. I've been taking it for about 6 months now, and here's the SEs I've had:


    I got a vaginal bacterial infection about a week into it - that was treated by my gyn but the treatment kicked me into a yeast infection & my onc gave me a pill for that which took care of it in a day. So that all ended in the first couple weeks and I haven't had problems with it since. I was getting a LOT of hot flashes, tried black cohash which helped some, had my onc put me on effector which helped more - he just doubled the dose & I imagine it will manage it. I haven't gained any weight & haven't changed my eating habits. I feel kind of tired - but have no idea whether it's from the Tam. So that's it so far - nothing major, although SEs are certainly different for everybody.

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  • vaper
    vaper Member Posts: 113
    edited December 2013


    My Oncolergist is trying everything she can to bully me into taking tamoxifen!

    I insisted on the CYP2D6 gene test until she ordered it. It came back that I have impaired metabolism.

    She still insist I take it, because at some big breast cancer conference a speaker sited 2 trials that he claimed showed I would still benefit. I looked up these trials they were done from all post menopausal woman. I am not post menopausal.

    There are many studies that claim I would not benefit. Including a Mayo clinic one.

    Some even claim Tamoxifen raises the chance of getting the worse kind of breast cancer.

    Some claim Tamoxifen does not work if you have low vitamin D in the winter months. I have low vitamin D all the time.

    I still have so many other health problems, and so much pain from surgery still I just can not add something that might make me even worse.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited December 2013


    Here's my deal with Tamoxifen. I am weakly er + (less than 5 percent), PR neg and her2+++. Once I finished chemo she wanted to put me on Tamoxifen and I did it for three years. She also toook my ovaries. I already had hot flashes from chemopause so no change there. However, it did give me more joint pain and I did gain weight. Now the question on weight gain, did I gain weight just because of menapause or was it the Tamoxifen? Not sure. I had a gross watery discharge which I guess is common but really it was gross and I hated it. Finally I told her I couldn't do it anymore. She put me on an AI (Arimidex and then Aromisin). They both increased by BP, gave me palpitations, horrible joint pain and I was really moody. So I stopped all the hormonal treatment. My onc said it was a quality of life issue and I was taking it. My feeling at your low level and at mine, I didn't think it was worth the risks. I tried it for several years but I am stage IV so I wanted to throw anything at it. I am NED and have been for 5 1/2 years. I have been off all hormonals now since this summer and am OK with my decision. There are some natural option you can choose if don't want to do the tamoxifen.


    Jennifer

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  • sduch1
    sduch1 Member Posts: 104
    edited December 2013


    Thank you for your feedback! I did start taking it (although I keep forgetting). I have no notable side effects other than some stomach issues that they say isn't related. I also feel like I have weight gain or bloating in my stomach that I can't get rid of. My onc said if I have a lot of problems they will take me off of it. It's still early so we'll see.


    If it was a drug targeting Her2 I wouldn't think twice about taking it!


    That's great Jenn, I have a friend who is having similar great results on just Herceptin.

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  • noellech
    noellech Member Posts: 86
    edited February 2014

    I like taking tamox. I think a lot of people do. Chemo put me in early menopause so tamox helps my heart and bones long term as well as halves the risk that I will develop a new cancer in my other breast. That is all before discussing what it might do to reduce the spread of my existing (hopefully gone) cancer. Side effects are minor for me. Good luck.

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  • vaper
    vaper Member Posts: 113
    edited February 2014

    noellech, I have never herd it helps heart and bones. I have herd it is not good for bones. Where did you get that info dear? Thank you.

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  • vaper
    vaper Member Posts: 113
    edited February 2014

    Jen, I understand! I am shocked that so many people are just believing Tamoxifen increases chances of cancer not returning with out doing good or usually any research on weather it really helps, does it cause a different worse cancer, and the other bad side effects.

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  • sduch1
    sduch1 Member Posts: 104
    edited February 2014

    I'm wondering if Tamoxifen causes fatigue/tiredness and also feeling like you are getting your period, even when you're not? I have been taking it and those are 2 things I have been experiencing--both causing me some worry.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    vaper---it is well known that tamoxifen is good  for both the heart and bones.

    anne

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  • Emma12
    Emma12 Member Posts: 43
    edited February 2014

    hi all. I have taken tam. For 5 days now. Apart from the obvious hot flushes i get a nauseated feelin in my tummy.  Us this normal and how are we supposed to kniw if the meds are really really wirking. I think everyobe body is different so we all get different SE????

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