• tamoxifen

    Asked by jojosmom on Saturday, April 20, 2013


    Has anyone decided to either stop tamoxifen or just not take it at all in the beginning?

    10 Answers from the Community

    10 answers
    • AlizaMLS's Avatar

      Hi jojosmom,

      It's Aliza - we've chatted before. I'm on Tamoxifen. It's not making life easy (as far as sex goes-that's for sure). It's a bummer because I was supposed to get married in December and I had a mastectomy instead. I was spared chemo (because of genetic Oncotype testing - I scored very low, so I didn't need it), but being ER+, I needed Tamoxifen.

      Believe me when I say I'd love to stop taking it, but I'm afraid of a recurrence, especially not having had chemo, so I'm going to continue taking it. I may change Oncologists because my doc was very rude to me this past week when I went in to see him re localized HRT. I may even change hospitals, but I'll probably stay on the Tamoxifen because I'm frightened not to do so.

      Perhaps if I'd had chemo, I'd do otherwise, but in my situation, Tamoxifen's where I'm at.

      Wishing you ell no matter what choice you make!

      Warm wishes,

      over 4 years ago
    • Ydnar2xer's Avatar

      I may be an exception, but I took Tamoxifen on the advice of my onc the first time I had breast cancer and I had VERY few reactions to it. I'm telling you this because you hear so many bad things about Tamoxifen on this site, and I'm suggesting that it doesn't bother EVERYONE that way! I got a different kind of breast cancer this second time around and my onc told me that now "they" recommend 10 years of Tamoxifen. You might want to ask your onc about that. Good luck & positive vibes your way,.

      over 4 years ago
    • karen1956's Avatar

      I endured AI's (and two months of tamox) for 3 1/2 years before I finally said, enough is enough....that was 3 years ago and I've never regretted my decision to stop AI's early. The side effects were causing too many problems for me....QOL was more important...I gave it my all and I'm good with my decsion....

      over 4 years ago
    • Honeypot's Avatar

      I know exactly how you feel as I didnt want to take the aromatose inhibitors as they can put on
      weight and I have struggled to lose two and a half stone. In the end I was frightened to take it
      but frightened not to take it, so I have reluctantly started them but I know that I wont last five
      years and not many people do.

      over 4 years ago
    • DianaL's Avatar

      I am currently on Tamoxifen and my main side effect is hot flashes; however, I have had one period that lasted for several hours that felt like PMS x ten! I have only been on this drug since 2/15/13, so I am hoping this one works. My doctor did say something about ten years and I did see that recommendation on TV. So this is better than the Arimadex that I had been on for 6 months. Everyone's side effects, hope if you decide to take it that yours are few. Oh, I was a low Stage II and did have chemo.

      over 4 years ago
    • gwendolyn's Avatar

      I would never consider not starting it because it truly is a wonder drug for people with hormone receptive cancers, much more important than chemo I've been reading lately. What is the harm in starting it? Many people have few or no symptoms. After you've taken it for a while then you can decide if the side effects are intolerable.

      over 4 years ago
    • Myungclas' Avatar

      The only side effect I notice from tamoxifen is the hot flashes, and I was having those from the chemo anyway. The drug works to prevent a recurrence of a life-threatening disease, so no, I have never considered not taking it. I figure any inconvenience or discomfort is preferable to the alternative.

      over 4 years ago
    • Nancebeth's Avatar

      I stooped after 2 months as the side effects were interfering too much with my quality of life. I know this question has been posted quite a bit. I think if you search for the topic, you'll find a wealth of answers about this. Also, it was posed on www.bcsmcommunity.org recently as well.

      I feel better off of it, and my oncologist is okay with it, although he would have preffered me to stay on it.

      over 4 years ago
    • Bug's Avatar

      My rate of recurrence numbers were low and my family has a history of strokes - from mild to major - so I elected not to take it (strokes are a possible side effect, though rare, I believe). I asked my oncologist if I was signing my own death certificate and she said no.

      over 4 years ago
    • Johnny13's Avatar

      I took tamoxifen for one month, swirched to an aromatase inhibitor two weeks ago, and discovered even worse side effects. So I talked to my primary care physician, telling him I didn't think five years of various problems were worth the small possibility that these drugs would be greatly beneficial. He talked to my oncologist, and they reviewed my case and ended up agreeing with me. No more drugs, as of today! Btw, my cancer was caught very early, surgery was successful, clear margins, no lymph node involvement. Chemo went very well, minimal side effects. I'm ready to feel like a totally WELL person!

      over 4 years ago

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