Who Here Is On Tamoxifen And How Are You Doing On It?

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survivorbc09
survivorbc09 Member Posts: 4,374 Member
edited March 2014 in Breast Cancer #1
Wondering how many here are on it and if you are experiencing any side effects. If so, what are they? And, will you continue with tamoxifen?

Thanks!

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  • jnl
    jnl Member Posts: 3,869 Member
    #2
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    Hi. I am not on it yet. I
    Hi. I am not on it yet. I am suppose to go on it eventually. But, my oncologist wants me to have the CYP2D6 test ( i think that is it ) first, to see if I metabolize it. If I don't, there is no sense in taking it.

    Leeza
  • tjhay
    tjhay Member Posts: 655
    #3
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    Tamoxifen
    I take tamoxifen, thanks to it I have been pushed in to menopause, and all of it lovely side effects. Seeing as most of the side effects are on the list of possible side effects. Yes I will continue to take the med. The fact that if could reduce the chance of the cancer coming back is worth the side effects.

    Tj
  • Ltalcott
    Ltalcott Member Posts: 119
    #4
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    no problems
    I've been taking tamoxifen since May 1st, with no real problems. Seems like I was warmer most of the summer than normal. Like, is-it-hot-in-here-or-is-it-just-me? but most of the time, someone would answer that it really was hot. (59 days over 100 degrees here this summer.)

    I seem to be getting canker sores more often, which I've never seen as a side effect, and I do have a headache when I wake up, maybe 3-4 times a week. But I had headaches BCC (that's Before Breast Cancer!), so while I could blame it on the tamoxifen, it wouldn't really be fair.

    I'm taking 10mg am and pm. Sounds like from others taking it twice a day makes it easier.

    Lisa
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #5
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    taking it
    I've been on it since April. I started with 20mg in the am but the hot flashes were really bothering me so I started breaking the tablet in half and take half in the am & half in the pm. Hot flashes are better and I have occasional leg cramps but it's really been OK. I did have the blood test that shows that I do metabolize it.

    Maureen
  • aurora2009
    aurora2009 Member Posts: 544 Member
    #6
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    Same for me
    I am supposed to go on it after I finish rad's. I'm very nervous about it. I asked my doctor if she could test me to see if I metabolize it, and she said no problem, so I'll go on Monaday to the lab for blood work. The only problem is that I have to check with the lab before they do it because my insurance may not cover it.

    I'm sure hope they do. So far all the side effects that I've heard of on here add up to:

    1. Hot Flashes
    2. Night Sweats
    3. Blood Clots
    4. Vaginal Discharge
    5. Leg Cramps
    6. Bone Aches and Pains
    7. Doubled Reoccurance Rate When Combined With The Wrong Anti-Depressants
    8. Uterine Cancer In Postmenopausal Women And After 5 Years Of Use
    9. Headaches

    I'm not looking forward to any of these, but if I do metabolize it and it prevents it from coming back, then I figure it's worth a try, maybe I'll get lucky and the side effects for me will be minimal.

    Take Care Surviver,
    I hope you get the answers you're looking for. I know I will following this thread as well.

    Aurora

    P.S. I'll keep updateing as I see more
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #7
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    tjhay said:

    Tamoxifen
    I take tamoxifen, thanks to it I have been pushed in to menopause, and all of it lovely side effects. Seeing as most of the side effects are on the list of possible side effects. Yes I will continue to take the med. The fact that if could reduce the chance of the cancer coming back is worth the side effects.

    Tj

    Question if you please...
    Tj,

    Am wondering... will you remain on tamoxifen if you have, indeed, started menopause? Does your body still produce estrogen... after menopause? Am just wondering. Let me know when you have the chance.

    Bella Luna
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #8
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    Bella Luna said:

    Question if you please...
    Tj,

    Am wondering... will you remain on tamoxifen if you have, indeed, started menopause? Does your body still produce estrogen... after menopause? Am just wondering. Let me know when you have the chance.

    Bella Luna

    From what I know....
    Bella Luna, to answer part of the question about producing estrogen.... your body produces estrogen from several sources. Your ovaries are the biggest producer, but next to that is your fat cells. Thats why they are always stressing to us to get exercise and maintain a healthy diet. So I am bumming because I just started the Tamoxifen but haven't lost the 10 pounds I gained from guitting smoking! Lord knows, I don't want extra fat cells! Arggg!! ♥ Pammy
  • shanjanei
    shanjanei Member Posts: 6
    #9
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    tamoxifen
    finished chemo 2-wks before my 30th birthday in march 2009. started tamoxifen in April 2009. So far I guess I'm okay I have alot of hot flashes at night, I am dizzy alot, I also forget things quickly but I was told that was from chemo, my hair has not fallen out anymore than what it did after starting chemo it's actually growing in very curly
  • HillBillyNana
    HillBillyNana Member Posts: 107
    #10
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    jnl said:

    Hi. I am not on it yet. I
    Hi. I am not on it yet. I am suppose to go on it eventually. But, my oncologist wants me to have the CYP2D6 test ( i think that is it ) first, to see if I metabolize it. If I don't, there is no sense in taking it.

    Leeza

    Metabilize Tamoxifen? Take Femara?
    I don't think I had a test to see if I metabolized the tamoxifen!! What good did it do me if I didn't metabolize it? My side effects were minimal - at least to me. I took it 5 years. I have had hot flashes the whole time. And I still have them after stopping the tamoxifen. I did notice about 2 years into it that i was losing hair but not enough for it to be noticeable. My hair came back curly and thick after chemo!! As for other side effects of tamoxifen, I don't think I had any. I am on a 6 month 'no drug' thing. Supposed to take Femara starting in Decemer. But I have just noticed how expensive it is. And I don't know if I need to take or not. ?????
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #11
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    HillBillyNana said:

    Metabilize Tamoxifen? Take Femara?
    I don't think I had a test to see if I metabolized the tamoxifen!! What good did it do me if I didn't metabolize it? My side effects were minimal - at least to me. I took it 5 years. I have had hot flashes the whole time. And I still have them after stopping the tamoxifen. I did notice about 2 years into it that i was losing hair but not enough for it to be noticeable. My hair came back curly and thick after chemo!! As for other side effects of tamoxifen, I don't think I had any. I am on a 6 month 'no drug' thing. Supposed to take Femara starting in Decemer. But I have just noticed how expensive it is. And I don't know if I need to take or not. ?????

    Testing is important for Tamox
    Having the test to see if you metabolize Tamoxifen is very important. Otherwise, you are taking a drug that is doing nothing for you and you are risking very serious, if not life threatening, side effects.

    Hugs, Diane ♥
  • HillBillyNana
    HillBillyNana Member Posts: 107
    #12
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    DianeBC said:

    Testing is important for Tamox
    Having the test to see if you metabolize Tamoxifen is very important. Otherwise, you are taking a drug that is doing nothing for you and you are risking very serious, if not life threatening, side effects.

    Hugs, Diane ♥

    I wish I had come here 5 years ago
    Thanks for the info. I am going to ask just for the heck of it if I had a test before taking the Tamoxifen.
  • Piggies
    Piggies Member Posts: 26
    #13
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    No Side Effects Here
    I've been taking Tamoxifen for almost one year (November 1st). I had a lumpectomy and six weeks radiation, NO CHEMO for early stage one Breast Cancer. I'm too young for menopause and was concerned about being thrown into menopause early. Luckily, my period has never been so regular. I can't complain. I've had some night sweats and a few leg cramps. No hot flashes and from what I'm told when you have a hot flash you know it.

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