tamoxifen

teresa41
teresa41 Member Posts: 471
edited March 2014 in Breast Cancer #1
i went to my dr in november to start me on tamoxifen he wants me to start it jan 1, he said he wants me to enjoy the holidays before i start taking it . im just wondering if anyone that has taken it could share with me if there have been side affects from it i know everyone is different im a little worried. thank you ..teresa

Comments

  • tgf
    tgf Member Posts: 950 Member
    tamoxifen
    I started on it a little over a month ago and have had NO problems. I must admit that after reading some of the posts on this site I was a bit concerned and wasn't thrilled with the idea of taking it ... but my oncologist said I MUST take it. I was concerned about the hot flashes people talk about ... so I had the "brilliant" (?) idea that I'd take half the dose in the morning and half at night ... and I haven't had any REAL hot flashes. A few "warm" flashes ... but nothing I couldn't deal with. Didn't feel like ripping my clothes off and jumping in the freezer.

    My main concern with tamoxifen was that I'd read of recent research indicating that certain antidepressants should NOT be taken with tamoxifen ... and I had been taking 2 of the "no-no" antidepressants ... so my oncologist switched me to effexor. I was more afraid of changing antidepressants than I was of tamoxifen side effects ... so I switched the antidepressants about a month before I started tamoxifen in case I was going to have a problem with effexor. But ... effexor works fine ... and so far so good with tamoxifen.

    I think it's all like everything else ... we all have different bodies and different our diagnosis is different ... and the treatment is different and our bodies respond to the treatments differently. We may all be on the same road ... but some of us hit bumps and potholes that others might not. We just have to keep going ... and know that we are not on that road alone. We're all in this together.

    hugs.
    teena
  • crselby
    crselby Member Posts: 441
    side effects
    Hi Teresa,
    I have been on Tamoxifen for a month. Side effects? Of course there are side effects! Everything we put into our bodies affects us. Chemo, for example. Those women I read about going through chemo on this site are my heros. I don't think I could drip poison into my veins and stay sane.

    But here I am taking Tamoxifen. My medical oncologist said it would reduce the chance of recurrance from 14% to 8%, maybe more. (There are so many factors that affect this issue.) I don't like to take aspirin unless I have exhausted other possiblities. I didn't take vitamins before my cancer diagnosis, because it's just too easy to upset your body's natural balance of things that way. But here I am taking Tamoxifen.

    I rejected taking it, or any other hormone thereapy, at my first visit to the medical oncologist. He was very careful to not push me one way or the other, except that he wanted me to take it! (sarcasm) I told him the improvement of the recurrance odds was too small to risk the possible side effects, and off I went. Then, I did some more research. Probably the fact that my tumor cells were aggressively growing (grade 3, "bad boys" the surgeon said) made me reconsider.

    So here I am taking Tamoxifen. I can stop and throw the pills away anytime I want. Looking at taking these for five years seemed like too much of a commitment for me, but you don't have to. The studies researching the effectiveness of Tamoxifen were done, for the most part, for five years. That's how they came up with that number.

    Now that I'm one month into taking Tamoxifen, here are my side effects: the hot flashes that I have lived with since the quick onset of menopause 10 years ago when I was 47, are still here. Same strength, same frequency. My 'feminine areas' are a little drier now so I am using an approved moisturizer for that area daily. That's it so far. Blood clots could be down the road. Or uterine cancer. Or a new breast cancer. Apparently I grow really good ones on what ever estrogen I still produce. So it makes sense to reduce its effects even more. So here I am taking Tamoxifen.

    I hate losing any more qualities that make a woman alluringly feminine, but I think it's the better choice. Sigh. Hope this helps and doesn't scare you away. I wanted to be honest, not just supportive. The tough part is, everyone reacts differently, so what you read here, may not happen to you! Good luck, dearie.
  • helen e
    helen e Member Posts: 223
    tgf said:

    tamoxifen
    I started on it a little over a month ago and have had NO problems. I must admit that after reading some of the posts on this site I was a bit concerned and wasn't thrilled with the idea of taking it ... but my oncologist said I MUST take it. I was concerned about the hot flashes people talk about ... so I had the "brilliant" (?) idea that I'd take half the dose in the morning and half at night ... and I haven't had any REAL hot flashes. A few "warm" flashes ... but nothing I couldn't deal with. Didn't feel like ripping my clothes off and jumping in the freezer.

    My main concern with tamoxifen was that I'd read of recent research indicating that certain antidepressants should NOT be taken with tamoxifen ... and I had been taking 2 of the "no-no" antidepressants ... so my oncologist switched me to effexor. I was more afraid of changing antidepressants than I was of tamoxifen side effects ... so I switched the antidepressants about a month before I started tamoxifen in case I was going to have a problem with effexor. But ... effexor works fine ... and so far so good with tamoxifen.

    I think it's all like everything else ... we all have different bodies and different our diagnosis is different ... and the treatment is different and our bodies respond to the treatments differently. We may all be on the same road ... but some of us hit bumps and potholes that others might not. We just have to keep going ... and know that we are not on that road alone. We're all in this together.

    hugs.
    teena

    Teena
    Just a word of caution. I was taking effexor and know of abot 10 others who were alo. The docotr did not want me on it a long time because it is hard to get off of. You have to taper off it and believe me that was very hard. Took me 6 weeks to get off the second time I tried. I was mean and ugly (well more than I normally am) for the first four weeks and couldn't stand myself. I am now on Tamoxifen and Wellbutrin for depression. No side effects either. I was on Wellbutrin before I was diagnosed with bc. Hope you have a better experience than I did.
  • kimber10
    kimber10 Member Posts: 47
    crselby said:

    side effects
    Hi Teresa,
    I have been on Tamoxifen for a month. Side effects? Of course there are side effects! Everything we put into our bodies affects us. Chemo, for example. Those women I read about going through chemo on this site are my heros. I don't think I could drip poison into my veins and stay sane.

    But here I am taking Tamoxifen. My medical oncologist said it would reduce the chance of recurrance from 14% to 8%, maybe more. (There are so many factors that affect this issue.) I don't like to take aspirin unless I have exhausted other possiblities. I didn't take vitamins before my cancer diagnosis, because it's just too easy to upset your body's natural balance of things that way. But here I am taking Tamoxifen.

    I rejected taking it, or any other hormone thereapy, at my first visit to the medical oncologist. He was very careful to not push me one way or the other, except that he wanted me to take it! (sarcasm) I told him the improvement of the recurrance odds was too small to risk the possible side effects, and off I went. Then, I did some more research. Probably the fact that my tumor cells were aggressively growing (grade 3, "bad boys" the surgeon said) made me reconsider.

    So here I am taking Tamoxifen. I can stop and throw the pills away anytime I want. Looking at taking these for five years seemed like too much of a commitment for me, but you don't have to. The studies researching the effectiveness of Tamoxifen were done, for the most part, for five years. That's how they came up with that number.

    Now that I'm one month into taking Tamoxifen, here are my side effects: the hot flashes that I have lived with since the quick onset of menopause 10 years ago when I was 47, are still here. Same strength, same frequency. My 'feminine areas' are a little drier now so I am using an approved moisturizer for that area daily. That's it so far. Blood clots could be down the road. Or uterine cancer. Or a new breast cancer. Apparently I grow really good ones on what ever estrogen I still produce. So it makes sense to reduce its effects even more. So here I am taking Tamoxifen.

    I hate losing any more qualities that make a woman alluringly feminine, but I think it's the better choice. Sigh. Hope this helps and doesn't scare you away. I wanted to be honest, not just supportive. The tough part is, everyone reacts differently, so what you read here, may not happen to you! Good luck, dearie.

    Hey Teresa,
    Ive been on

    Hey Teresa,
    Ive been on tamoxifen for 3 months I haven't had any side effects to speak of I take mine 2 10mg at night right before I go to bed mainly because they do make me a little naseuted sp and headaches but nothing else to speak of, good luck
    Kim
  • Piggies
    Piggies Member Posts: 26
    No Problems Here
    I've been taking Tamoxifen a little over a year, since November 1, 2008. I had early Stage 1 Breast Cancer, lumpectomy, no chemo and six weeks radiation. I'm too young for menopause and was concerned about menopause like symptons such as hot flashes. From what I understand, if you have a hot flash you know it. I've had a few minor night sweats, some leg cramping and that's about it. No hot flashes. All in all, I'm not having any issues with it.

    I wish you well.
  • Ltalcott
    Ltalcott Member Posts: 119
    I started tamoxiphen on May
    I started tamoxiphen on May 1st of this year, and I'm not having any problems. The summer here in Texas was really hot, and I thought I might be hotter than normal. But nothing like what others describe as a hot flash. And now that it's cold here, I'm bundled up and cold, just like I have been every winter of my life.

    I went through a month or so when I was having trouble sleeping, but we had my daughter-in-law and grandson move in with us about that same time for a month visit. I was just back to work full-time for a couple of weeks, so while the visit was great, it was stressful. (not the tamoxiphen, huh?)

    I've had a two bouts with cacker sores, maybe 4-5 at the same time. I've never heard of that as a side effect, but I've never had more than one at a time, so I'm blaming it on the tamoxiphen. (Darn, I forgot to ask when I was in for a check up in November, out of mouth, out of mind!)

    I take 10mg am and 10 mg pm, which I've heard makes things go easier. (The doc I met with recently said I could take both at the same time, go figure.)

    Lisa
  • rainbow4
    rainbow4 Member Posts: 137
    tgf said:

    tamoxifen
    I started on it a little over a month ago and have had NO problems. I must admit that after reading some of the posts on this site I was a bit concerned and wasn't thrilled with the idea of taking it ... but my oncologist said I MUST take it. I was concerned about the hot flashes people talk about ... so I had the "brilliant" (?) idea that I'd take half the dose in the morning and half at night ... and I haven't had any REAL hot flashes. A few "warm" flashes ... but nothing I couldn't deal with. Didn't feel like ripping my clothes off and jumping in the freezer.

    My main concern with tamoxifen was that I'd read of recent research indicating that certain antidepressants should NOT be taken with tamoxifen ... and I had been taking 2 of the "no-no" antidepressants ... so my oncologist switched me to effexor. I was more afraid of changing antidepressants than I was of tamoxifen side effects ... so I switched the antidepressants about a month before I started tamoxifen in case I was going to have a problem with effexor. But ... effexor works fine ... and so far so good with tamoxifen.

    I think it's all like everything else ... we all have different bodies and different our diagnosis is different ... and the treatment is different and our bodies respond to the treatments differently. We may all be on the same road ... but some of us hit bumps and potholes that others might not. We just have to keep going ... and know that we are not on that road alone. We're all in this together.

    hugs.
    teena

    Effexor
    Teena and everyone else,
    I'm on Arimidex, but wanted to throw something into the mix here. My rad onc told me that effexor has an added effect of cutting down on the hot flashes (besides it's antidepressant purpose). He's suggested that I try it, but so far I haven't. Just wanted to add that to the discussion.
    rainbow4
  • KeriLee
    KeriLee Member Posts: 25
    tamoxifen and effexor
    I have been taking tamoxifen since April 2008 and besides the hot flashes, really no other side effects, the effexor does help with them though I still sleep with the fan on every night. I used to always be cold, not any more new internal heating system. Just dress in layers.

    Good Luck
    Keri
  • Taina
    Taina Member Posts: 166
    1 week on
    I started 5 days ago...
    The 1st day i took it before going to bed...
    big mistake, i couldn't sleep and got hot...
    next day i took it during the day since i wanted to sleep.
    get headaches, migraines, nausea, gets hot...
    i will see my oncologist in 3 wks...
    good luck....
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Taina said:

    1 week on
    I started 5 days ago...
    The 1st day i took it before going to bed...
    big mistake, i couldn't sleep and got hot...
    next day i took it during the day since i wanted to sleep.
    get headaches, migraines, nausea, gets hot...
    i will see my oncologist in 3 wks...
    good luck....

    Hi Teresa
    Just want to wish you good luck on tamox Teresa!

    Hugs, Diane ♥
  • jennytwist
    jennytwist Member Posts: 896
    DianeBC said:

    Hi Teresa
    Just want to wish you good luck on tamox Teresa!

    Hugs, Diane ♥

    No choice
    My Dr told me I HAD to take the tamoxifen. My story is similar to many of the other "sisters" I started the tam in late Sept. I was terrified after doing some research. And after alot of whining to my Dr about it he said I didn't have a choice if I wanted to prevent a recurrance. I, too had grade 3 tumors - . I had a breast removed, then chemo - no rads. I also started on the effexor about 2 weeks before beginning the tam. The chemo put me into menopause (I'm 55) & I'm not sure the hot flashes are from that or the tam. I asked the Dr and he said "one hot flash is the same an another" in other words I'm hot flashing from both - otherwise the tam. seems OK - I'm a little stiff when I'm sitting or lying down for too long. I worry about the s.e. but must trust I'm doing what I can, right now to keep bc from coming back.
    We all react differently - as my Dr said, "at least, give it a try" With no other options at this point for me, I'm trying - I'm determinded to do whatever I can!
    much love,
    Jenny
  • jnl
    jnl Member Posts: 3,869 Member

    No choice
    My Dr told me I HAD to take the tamoxifen. My story is similar to many of the other "sisters" I started the tam in late Sept. I was terrified after doing some research. And after alot of whining to my Dr about it he said I didn't have a choice if I wanted to prevent a recurrance. I, too had grade 3 tumors - . I had a breast removed, then chemo - no rads. I also started on the effexor about 2 weeks before beginning the tam. The chemo put me into menopause (I'm 55) & I'm not sure the hot flashes are from that or the tam. I asked the Dr and he said "one hot flash is the same an another" in other words I'm hot flashing from both - otherwise the tam. seems OK - I'm a little stiff when I'm sitting or lying down for too long. I worry about the s.e. but must trust I'm doing what I can, right now to keep bc from coming back.
    We all react differently - as my Dr said, "at least, give it a try" With no other options at this point for me, I'm trying - I'm determinded to do whatever I can!
    much love,
    Jenny

    Tamox
    I am still on the fence about tamoxifen. But, you can always start it and if you can't tolerate it for some reason, you could stop taking it. Good luck!

    Leeza