• Anyone stageIIb her2 stop taking tamoxifen after 2 years?

    Asked by Nomadicme on Thursday, December 6, 2012

    Anyone stageIIb her2 stop taking tamoxifen after 2 years?

    I hate the stuff, and wonder if its necessary in those of us that got Herceptin? I'd like to take it for 2 years and then stop. Anyone done this and if so how long since diagnosis?

    13 Answers from the Community

    13 answers
    • Daytonagal's Avatar
      Daytonagal

      Why do you want to stop?

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      I hate the side effects. And why take a drug if you don't need it? I just read of a study where the chemotherapy CT with Herceptin was as efficacious as ACT with Herceptin (5 year survival rate). Now I had ACT plus Herceptin, the A is the agent that most likely pushed me into menopause at the age of 41. Unnecessary, painful. Wish my onc had been better informed, as these results were just published but I'm sure were being talked about at ASCO and San Antonio. Herceptin is a game changer.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      One has nothing to do with the other. Her2 is a protein and Herceptin in a blocker/inhibitor for that protein. Tamoxifen is an estrogen blocker/inhibitor. If you aren't going to take it for 5 year period shown to be required for it being effective, you might as while stop taking it now.

      over 4 years ago
    • JudyS's Avatar
      JudyS

      Herceptin is for the HER2 positive diagnosis that you received. Tamoxifen is for the Estrogen/Progesterone positive diagnosis you received. These 2 medicines are very different from eachother and you really need to consult with your oncologist and weigh which is the best treatment for yourself based on the accurate information. I hope this is helpful. Best wishes!

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      Actually Nancy, every day Tamoxifen is taken is a day cancer cells won't grow due to estrogen, so your thinking that it takes 5 years is wrong. What was shown in the study was that every year on Tamoxifen provided extra survival benefit, and since the study was cut then, the thinking is that even longer would be beneficial. My hope is that the Herceptin was strong enough to eradicate the micro metastasis, and I'm hoping to hear from women that made that choice.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      Can you tell me where you got that information? I ask because everything I have read or have been told by doctors is quite contrary to that. There is no day to day correlation between taking Tamoxifin and not getting cancer. If that were the case, everyone with ER+ cancer would be on Tamoxifin for life and nobody would ever get cancer again. The initial studies indicated that there was no additional benefit to taking it longer that 5 years but more recent ones show additional benefit for taking it for 10 years. That does not mean that taking it for 2 years is better than 1 year or not at all.

      Herceptin does not have anything to do with metastasis. Herceptin helps to prevent overproduction of HER2 protein enzymes attaching to cells. The excess HER2 can cause cells to mutate into malignant ones. Tamoxifen binds to the estrogen receptors on cells, thus helping to prevent estrogen from binding to them and cause them to mutate into malignant cancer cells. But neither is of any benefit to the other. Herceptin has no capability to protect against ER+ cancer recurrence and and Tamoxifen has no capability to protect against HER2 cancer recurrence.

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      @nancy There are many adjuvant trials trying to establish ideal duration of treatment. The following citation is for the Lancet article that established superiority of 5 years Tamoxifen, over 2 years, and over 1 year: Lancet. 1998 May[phone number redacted]):1451-67.
      Yesterday the results of the ATLAS study were published in the Lancet, earlier presented at sabcs. ATLAS showed the benefit of 10 years of Tamoxifen, with the greatest benefits shown 10-14 yrs after diagnosis. Of course with th superiority of AIs in menopausal women, who knows what the treatment algorithm will look like now.
      And yes I'm aware of the different mode of action of Herceptin and Tamoxifen. What I'd like to see is the survival advantage in Her-2 positive women on Tamoxifen as I feel we may not need as much Tamoxifen (and it's been shown that Tamoxifen and Herceptin act synergistically when given together, thus your conclusion that one is not a benefit to the other is erroneous). Not sure if this answers your question, but yes 1 year confers survival benefit, over 2 years, and that over 5 years (look up the Lancet paper).

      over 4 years ago
    • karen1956's Avatar
      karen1956

      I was stage 3 (but not Her 2) ER/PR+ and I endured AI's (and tamox) for 3 1/2 years...the side effects just became too much to tolerate....its been 2 1/2 years since I stopped taking them and never for a moment have I second guessed my decision......

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      @karen thanks for sharing. I just keep reading about the increased survival benefit of longer therapy, and I'm scared, don't want to die. Thing is its been over a year since all the mess, and I want to feel more normal, the Tamoxifen doesn't help with that. To make matters worse I just read a study that was just published where 10 years on Tamoxifen give even better outcomes....grrrrrr. Oh I also did read Tamoxifen causes changes in lean body mass, more than weight. And I guess that's what I'm noticing, I've turned into an old woman overnight. Maybe I'll get lucky with the Arimidex and lose weight ;)

      over 4 years ago
    • Echuck's Avatar
      Echuck

      I stopped taking it after almost 4 years because of the side affects. 6 months later I found out that I had 3 tumors on my liver and it was in bones in my chest cavity and spine. Luckily I started chemo in Feb and the cancer in under control I guess. If I had to do it all over again I would have stayed on it! It only works about 50% of time from what I read. My blood numbers after being off it for 5 months were all in the normal range for the 1st time in 4 years, 4 months later after all these good tests the cancer was all over my liver and bones. Was it there the whole time who knows? I am now taking Faslodex once a month. I am just learning how to deal with them. Think long & hard before you quit taking it. It can always be worse.

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      @echuxk thanks for the advice. I just feel so good right now, with Tamoxifen being the cloud in my sky. Guess no one can predict my personal chances of recurrence, wish there were stats out there regarding Herceptin in the adjuvant setting. All the best in your journey, and don't beat yourself up, 4 years is a pretty good stretch.

      over 4 years ago
    • Myungclas' Avatar
      Myungclas

      The Dallas morning news published an article yesterday about a study saying that now 10 years is recommended for tamoxifen. I'd say any side effect is better than the possibility of being dead....but that's just me.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      I would suggest you discuss the pros and cons with your oncologist. I think you are misinterpreting some of the literature you are reading on the internet and I would hate to see you make a decision either way based on erroneous assumptions. It might to print out what you think is supporting your assumptions and take them to your oncologist.

      over 4 years ago

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