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Thread: Tamoxifen - what are your experiences?

  1. #1
    Newbie New User
    Join Date
    Feb 2013

    Tamoxifen - what are your experiences?

    I know that Tamoxifen is typically perscribed for breast cancer. I will begin this drug shortly however, I have been battling stage 4 ovarian cancer. Mine is a rare form, only in about 2% of patients (stromel cell). They want to begin Tamoxifen upon completion of chemo (5th tomorrow - 1 more to go). I am writing this board to see what the common side effects of this drug will be. Not because I won't take it, just want to be prepared. I think my biggest question is, I lost my hair during chemo, will it grow back if using this drug? If not... I gotta get some wigs!

  2. #2
    You won't lose your hair; it'll grow back exactly when it would have as your body recovers from the previous chemo. Potential side effects of tamoxifen include hot flashes, nausea, fatigue, change in libido and weight, as well as risks, which include an increased risk of uterine cancer from approximately 3 in 1000 to 8 in 1000 patients, cataracts, and risk of developing venous blood clots. Here is some more info about tamoxifen, which includes links to patient information.

  3. #3
    Newbie New User
    Join Date
    May 2013
    Hi There,

    I've found tamoxifen to have very minor side effects. I've been on it for 7 weeks and initially had a lot of hot flushes which eased gradually (and significantly after I changed brands). I'm documenting my experience here: http://pinkandapple.wordpress.com/

    I wish you all the best with your journey, and hope your body deals with tamoxifen easily. It didn't take me long to get used to it. PA

  4. #4
    Newbie New User
    Join Date
    Jun 2013
    so does any one know more about side effects

  5. #5
    Newbie New User
    Join Date
    Jan 2018
    Tamoxifen has made me feel worse than any of my chemo treatments. Ovarian cancer stage 3. Last chemo July 2017 and cleared. Complete hysterectomy and two resections of my lower intestines. Went back to work in August for 3-4 hours a day. That was the best I could do before the fatigue set in. In November I experienced a complete setback. Leg pain returned making it difficult to walk. Terrible bowel issues and so tired all the time. Now I'm pretty much home bound and the depression is debilitating. These are common side effects from tamoxifen. I'm looking for alternatives as this is no quality of life!

  6. #6
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Thank you for your reply to this thread Slgwinsome however it is an old thread with members who have not been on here for years. I encourage you to start your own thread but I will be closing this one to prevent confusion.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!


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