Post Menopausal Women on Tamoxifen

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Nancy618
Nancy618 Member Posts: 374
edited October 2018 in Hormonal Therapy - Before, During, and After

After cycling through all the AIs over a period of 15 months, I agreed to give Tamoxifen a try. I had suffered so much with bone and muscle pain, dryness, depression among other things on letrozole, anastrozole and exemestane. I was ready to just quit all rx because taking them only increases my survival rate by 2% over 10 years.

I started on the Tamoxifen only 5 days ago. Everything was going well. Until this evening, when I went to the bathroom, and I had a dark yellow discharge in my panties. I am also having what feels like very mild menstrual cramps. Has anyone else experienced discharge? It does not appear to be bloody.

I was also disturbed by how foggy I felt today after having a good night's sleep. Even remembering names was difficult today.

The MO nurse said to give it a couple of weeks to a month before deciding if I was having any side effects that I couldn't tolerate. NOBODY ever mentioned vaginal discharge except to report vaginal bleeding immediately.

Just look for others' experiences....post menopausal women who are taking tamoxifen only, please.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited September 2018

    Hi Nancy. I had discharge for about three weeks then it stopped. Then had leg cramps, then they stopped. So since Tamoxifen can both prevent a cancer recurrence and strengthen bones, my advice would be to stay on it for four months then see where you are. Best of luck. (I'm 60 and post menopausal.)

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2018

    I'm still in the gray area for menopausal status - chemo stopped my periods. But I had LOTS of vaginal discharge while on Tamoxifen. I had to use liners or change underwear and felt kind of gross a lot.

    I also had lots of problems with concentrating and keeping thoughts in my head long enough to act on them. I had terrible leg cramps (also in my abdomen and neck on occasion) so that my sleep was always disrupted and I began to get depressed.

    I stayed on the Tamoxifen for 3 months without improvement despite trying lots of things. I've considered trying again with taking a smaller dose - just haven't gotten my courage up yet. I also had some bumps in the road with a thickened uterine lining and one period after 18 months without any.


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  • Nancy618
    Nancy618 Member Posts: 374
    edited September 2018

    Thank you Georgia and NotVeryBrave for your insights.

    I sure hope I don't get leg cramps. I had them so bad with the other AIs, particularly letrozole. I was off letrozole for 5 weeks before they went away.

    I'm not digging this discharge. Especially after having been so dry for over a year. But these cramps are really disturbing me. Needless to say I haven't had menstrual cramps in MANY years.

    I sure wish there would be one of these pills that didn't have side effects. I also wish I could be convinced that the decrease in quality of life is worth it.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2018

    Have you spoken with your MO about what your recurrence risk is? I know that these hormonal therapies decrease that residual risk by 40-50% - so quite a bit. But ... if your risk is very low and you're okay with that ... QOL is important, too.


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  • Nancy618
    Nancy618 Member Posts: 374
    edited September 2018

    I have only used the calculator for survival rate. Have not seen one for recurrence. Mine was a little over a year more with medication. Again, survival, not recurrence.

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  • Nancy618
    Nancy618 Member Posts: 374
    edited September 2018

    Just an FYI... Pelvic pain and vaginal discharge are NOT normal on tamoxifen. My doctor told me to stop the tamoxifen and is ordering a pelvic ultrasound. Unfortunately, I'm out of town for 2 weeks, so it's going to be scheduled when I get back.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2018

    I don't know that they are "normal" but they are certainly reported frequently.

    I hope everything turns out okay with your ultrasound!



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  • Nancy618
    Nancy618 Member Posts: 374
    edited September 2018

    Thank you NotVeryBrave... I guess I'm a little ticked that I wasn't told it was a possibile side effect and that I was told to try the tamoxifen for a couple weeks before calling with any questions.

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  • KCKCKT5
    KCKCKT5 Member Posts: 16
    edited October 2018

    Any Updates? I've been on Letrozole and headaches, joint paint. Doc suggested Tamoxifen. Any thoughts on if better.



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  • Nancy618
    Nancy618 Member Posts: 374
    edited October 2018

    I am waiting on my ultrasound I'm scheduled for next Tuesday. I doubt I'll try tamoxifen again unless they can definitively tell me my pain and discharge are not related. Find it odd that it started 4 days after starting tamoxifen. But after a week off of it, I still have a twinge of pain and a bit of discharge. Hope I get some answers.

    I think I had the fewest SEs from letrozole, but they all had them. Had the worst and more numerous on anastrozole.

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