Any info on Tamoxifen would be much appreciated

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  • camul
    camul Member Posts: 2,537
    #22
    Hi Ayse
    I have been on it and off now 2x. For me the side effect was weight gain, but the reason for stopping it was extreme water retention. So now I am on Evista, no retention. I know that my onc's first choice is tamoxifen but at least the Evista should help!
    Other side effects the first time around were joint pain and mild hot flashes, but the joint pain was already there from the chemo, so don't know which was causing it.
    CC posted something recently on Tamoxifen that told of the benefits. I didn't want to stop it because of all of the positives. You may want to look at it!
    Hope everything is still going good for you! So happy that your move turned out so well!
    ~Carol
  • Different Ballgame
    Different Ballgame Member Posts: 868
    #23
    I will tell you what i know from other women that I polled
    Dear Ayse,

    I am a volunteer at Lynn Sage Breast Center and escort women for diagnostic tests on their breasts. Whenever I see that a woman is on Arimidex, Femara, or Tamoxifen, I ask how they are doing. Here are some replies relating to Tamoxifen. Hot flashes. Weight gain. Thinning of hair. (One woman said that her hair was coming out in patches while on Tamoxifen.) I also know that it can affect your uterus, your eyes, and create blood clots. As far as joint pain, only few seem to get it. I read in Overcoming Thyroid Disorders by David Brownstein, M.D. that Tamoxifen can affect the thyroid (which probably explains the weight gain).

    As we are all aware, some women experience no side affects, some experience mild side affects, and some experience tremendous side affects. No one can predict if you will experience side affects and what they will be. Some have side affects for many months, only to have them disappear for the remaining duration of treatment. (I find that fascinating and am curious why first there are side affects and then there are no side affects.)

    May I suggest that before taking Tamoxifen you do the following as a baseline of what is happening with your body prior to taking the drug:
    1. Have eyes checked by ophthalmologist and tell him that you will be starting Tamoxifen
    2. Have a uterus exam and tell your gynecologist that you will be starting Tamoxifen.
    3. Record now, before you go on Tamoxifen, all your aches, pains, and allergies, including your allergy reactions.
    4. Continue to eat healthy and take vitamins.

    I asked my hematology oncologist if she had ever prescribed Tamoxifen in half dosage for AM and PM. She said, "Yes. Some women did great with it (no side affects or very minimal side affects) and some women did not do well with it (they continued to have side affects). "

    Good luck. Let us know how you are doing.

    Lots of Hugs,
    Janelle
  • Kylez
    Kylez Member Posts: 3,761 Member
    #24
    dyaneb123 said:

    Hey Ayse
    I've been on Tamox
    Hey Ayse
    I've been on Tamox for a year now. I sweat like crazy in this heat which I never used to do
    but no joint pain. However I take meds for severe arthritis in my right knee so that may be curbing any joint pain I would would otherwise have from the Tamox.Good luck with it.
    Dee

    I am not on tamox as I fear
    I am not on tamox as I fear the side effects.
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #25
    side effects
    I am going to be the downer. DCIS in Jan 2009, tamoxifen started






    I am going to be the downer. I had DCIS and took tamoxifen for 7 months. Until the night I ended up in the hospital with a pulmonary embolism shower. Apparently, I'm s tough old broad because I am still alive. The only cause that could be the tamoxifen so I quit taking it. (The hospitalist was funny: "stop taking the drug that tried to kill me? Ya, I can do that.") 20 months later, no problems.

    So maybe I took the hit and everyone else has lower their percentage. Or not.

    Maureen

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