stopping tamoxifen

jcbeenthere

I recently read that bc is not caused by HRT in women who only took estrogen. This article was in the ACS news letter. I have been living in hell trying to endure the side effects of tamoxifen. My sweats are out of control..sometimes causing hours of delay in going somewhere. I have had to explain to many a stranger that it is medication which makes me pour sweat and get drenched while doing nothing. I have decided to take a break from it as I am beside myself with side effects. I too still lhave fatigue whick is a whole other change in lifestyle. I have put on lots of weight and can't stand to look at myself. I think things will be easier without that awful medicine. I gave it 2 yrs and will perhaps someday go back on something. I'm a 3 primary cancers survivor and frankly not feeling really gratefullness to be alive as I should be.

Lots of luck to all of you who are on the "tamoxifen highway"!!

LesleyH

Hi JC,

I am on tamoxifen and have been for 5 months. I have occassional hot flashes which don't bother me much. Sometimes I wake up at night with them. I have found that some things definitely make them worse and stress is the highest on the list. I have also found that some things make them easier and exercise tops the list. I have not had any weight gain, but I walk 5-8+ miles every day. The hot flashes are definitely worse when I walk less than 5 miles.

Best of luck.

Hugs.

Lesley

Susan956

I agree with Lesley that exercising does help the hot flashes and the weight gain. I gained about 15 pounds when I was in treatment, but with the Jenny Craig diet and exercise I have gotten my weight back under control and the hot flashes are better. I also take 1000 IU of Vitamin E. It seems to help the hot flashes as well. But you will have to give it a month to build up in your system. Have you asked your Doctor to see if you may can switch to Arimedex. It may be a little easier on side effects.

Sorry that you have haing such a hard time. Hope things will get much easier.

Take Care.... God Bless...

Susan

tlmac

I've been on arimidex for the last 3 years and it comes with it's own set of unpleasant side effects. The reality is our systems are all different. One person can take a drug with little adverse effect and another's entire life is changed by the misery. I agree with you that quality of life is terribly important. I also think it's something doctors may overlook. Miserable side effects compared to no side effects is an easy choice. Miserable side effects compared to a recurrance or, God forbid, stage IV disease isn't such an each choice. Please discuss this risk with your doctor before making such a major decision. Maybe he/she can offer an alternative.
terri

Future

Before you stop, have you talked with your doctor? There are some meds that can help with the sweats (sorry not the weight). Before I was switched to an aromatase I took effexor with tamoxifen so life became more terrible. Not knowing your history, hate to see you make that decision before you tried other options. Take care of yourself

opam

I have been on tamoxifen for 4 years now - one more to go! I take Effexor to help with the hot flashes - it seems to diminish the intensity for me - at least I can sleep through the night. I have gained about 50 pounds which my oncologist swears is menopause, not the tamoxifen. All I know is that I seem to be able to eat and eat and eat; not ever feeling really full. The scare of a recurrence was enough to keep me on the tamoxifen for the full 5 years. Don't know what I'll decide if my doc recommends an aromatase inhibitor after this! Check out all your options - my doc recommended effexor, vitamin E, and black cohosh for hot flashes. Just keep trying - something is bound to work for you! Good luck!

katcam

i have been taking tamoxifen for 1 1/2 years now. i too have terrible hot flashes and wake up every night so hot i can hardly stand it. then when i cool down, i freeze. i haven't slept all night more than a couple of times since i started the tamoxifen. so i don't know if the fatigue is the meds or the lack of sleep. it also pushed me into menopause. my onco said that maybe in a year he will switch me to something else as long as i am thru the menopause. exercise definitely helps. my onco said to try vitamin e, which also seems to help a little. he told me i shouldn't take the black cohosh - figures, that's what helped the most!! take care - don't stop without talking to the dr though, they may be able to help. God bless. :-)