Post Menopausal Women on Tamoxifen

Nancy618

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.

Georgia1

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.)

NotVeryBrave

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.

Nancy618

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.

NotVeryBrave

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.

Nancy618

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.

Nancy618

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.

NotVeryBrave

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

I hope everything turns out okay with your ultrasound!

Nancy618

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.

KCKCKT5

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

Nancy618

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.