stopping tamoxifen

jcbeenthere
jcbeenthere Member Posts: 19
edited March 2014 in Breast Cancer #1
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"!!

Comments

  • LesleyH
    LesleyH Member Posts: 370
    #2
    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
    Susan956 Member Posts: 510
    #3
    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
    tlmac Member Posts: 272 Member
    #4
    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
    Future Member Posts: 133 Member
    #5
    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
    opam Member Posts: 9
    #6
    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
    katcam Member Posts: 83
    #7
    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. :-)

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