going off tamoxifen
 

hi - i have continued on tamoxifen even though my five years were up last april because my boyfriend was diagnosed with stage 4 cancer. i wanted any anti-cancer ammo i could get in my corner for myself because i strongly believe in stress = cancer. in may 2014 i came home from italy and got a clot in my leg from the flight and tamoxifen and i have been on coumadin ever since, with difficult regulating. i think if i went off tamoxifen, i would get to come off that too. i don't know how much good tamoxifen is doing me anyway, i had a total hysterectomy in august 2010 and am obviously post-menopausal (i couldn't take any of the AI's, bad reactions). have any of you gone off tamoxifen and lost weight? i used to have the best metabolism and i also exercise, but now i am getting yet another tamoxifen SE - water retention in my legs. i would rather try to prevent a recurrence in other ways at this point. de-stress by working out, various supplements like D and turmeric, etc. thank you!

Re: going off tamoxifen
 

I stopped Tamoxifen after I had my 5 years in the bag. My onc told me they were now recommending 10 years, but the benefit was so small and the side effects so miserable I just thought, "nuts to that! I'm done!" She was fine with my decision.

I feel loads better now. I sleep better and my joints, especially my knees, are like they were pre-cancer 8 years ago! My weight has not benefited unfortunately, but I am post-menopausal now and eat too much for my new metabolism.

Re: going off tamoxifen
 

I was on Tamoxifen for 3.5 years. I developed every single side effect. I had uterine polyps that would hemorrhage and sent me to the hospital for emergency surgery four times last year. And then a month after my last surgery I developed a blood clot. So my docs all agreed that since my ER was so low in my tumor that the benefit certainly did not out weigh the risks. They attempted Zoladex to then be put on Arimidex but I had a horrific reaction to shutting my ovaries down. So I'm now on nothing except Metformin because I'm on a trial. I feel a heck of a lot better. I am so happy I'm off of it. Instead I have embarked on a lifestyle change to reduce unnecessary estrogen abortion.

Re: going off tamoxifen
 

I too was on Tamoxifen up until August 2015 and suffered dreadful side effects so I choose to have a full hysterectomy and move to Arimidex. Fast forward to now where I have a blocked duct in my good breast and was suffering from terrible physical pain since August - found out it is all from Arimidex! Took myself off of it and feel 10x's better! I gained 40lbs after from treatment and could not lose any weight. I am now 8lbs down from stopping Arimidex and Tamoxifen, not sure if there is a correlation but I believe they do cause part of the problem with weight.

I'm not getting back on any drug, I refuse to live in pain so I am now focusing on a healthy diet and cutting back on sugar, red meat, and acid causing food/beverages. Time to take my life back from Cancer!!

Re: going off tamoxifen
 

I am coming up to my 5 yr mark this May, my Dr has been on the ropes as if I need to continue since I was Stage 1. She wants me to make the decision. I want to come off of it, I feel my weight gain is from it, I don't have any other side effects from it. But I feel comfortable stopping it.

Re: going off tamoxifen
 

thank you for your responses! i appreciate it. i left a message for my onco on friday but i still haven't heard back, but i still quit taking it on friday. i'm just waiting to hear if i can now quit coumadin, or when i can quit it. she felt the blood clot in my leg after the flight and trains from italy were both flight and tamoxifen related. i cannot take AI's, i had bad reactions to all of them. i just realized that my hot flashes have already decreased dramatically even when it is no longer -10 degrees out, so i am THRILLED. i was originally having more than 40 a day when i first started this rollercoaster. haven't dropped an ounce, but maybe i will.... i work out hard several days a week. thanks again. v