Stopping Tamoxifen after only six months

pfulps

Diagnosed at 43 will be 45 soon, Lumpectomy, chemo, radiation and tamoxiphen stage 1b, grade 3.

I started taking Tamoxifen Jan 2015, just after chemo and radiation. My body couldn't handle it at the time; I couldn't get out of bed, I was so much pain. After a couple of months, I stopped it. Did a couple of months on Arimidex (with a shot to shut down my ovaries) and I was okay for a couple of months, but the pain began again. So, I waited... I started Tamoxifen again this past January, I thought I was going to be okay; taking Effexor along with it. I was so tired, the doctor doubled the effexor...I've progressively gotten worse side effects. I do have body aches but not the horrible joint pain I had last time. I can't get a good sleep and I'm so exhausted all the time. Now I'm constipated, I've got cataracts, my teeth grind so bad, I broke a molar. I'm horribly bruised up and down my legs, they just appear out of nowhere. The hot flashes aren't so bad but I still get them. I also can't lose weight, my hair stopped growing since I started again and it now sheds so bad, I'm afraid I'm going backward. I'm so tired all the time, I have cancelled most of my plans with friends at the last minute. I try to work myself up to being okay to join friends, but I just couldn't seem to. I go to work for a couple of hours, come home and take nap. Eat dinner and clean up and go back to bed. I'm either angry or sad, the moods just come on even while on the anti-depressant. The sex! my poor husband! I'm in so much pain all the time, and while I haven't had a period since I started chemo 2 years ago, I still get cramps. I got off the tamoxifen just a 5 days ago, and I feel like a new woman. I'm happy, I actually got up this morning and exercised! My husband loves this great mood I am in.

I feel like, if this is how I have to live for the next 5-10 years, I just don't think it's worth being on Tamoxifen.Is there anyone else that feels this way?

I'm sorry for the rant, I don't feel like I have anyone to talk with lately, as I don't want to put my husband through it all again.

katesmom97

Hi pfulps!

I am actually strongly considering stopping tamoxifen also. My side effects aren't quite as severe as yours, but bad enough to have had several discussions with my oncologist, who is supportive. I have been taking tamoxifen since March 2015, and if anything, I feel worse as time goes by. I was diagnosed with DCIS, stage 0, and had a unilateral mastectomy due to multiple affected areas. You know your body best, and only you can decide what's best for you. Hope you continue to feel better and more like your old self!

Katesmom97