Anyone not have a problem taking Tamoxifen

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Hello everyone,

I had a BMX with DIEP recon in early December.  My oncotype score was 11 and my recurrence rate is 8%.  I had a mix of DCIS and a .7 ILC tumor, no node involvement. I know my oncologist will want to put me on Tamoxifen.  Doctors all say its well tolerated, but we all hear horror stories. Is there anyone who has taken Tamoxifen without any problems?  Do you have any advice?  I also take 100 mg of levothyroxine for my underactive thyroid. 

Thanks in advance!  Be well!

Erica

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Comments

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited December 2014

    I had no problem at all with Tamoxifen. Wouldn't have even known I was taking anything.

    Edit: my friends also took Tamoxifen with no side effects.

  • Manu14
    Manu14 Member Posts: 153
    edited December 2014

    I've had some bad nighttime leg cramps until I started taking magnesium supplements, but that has pretty much been it. A friend of mine took it for 5 years and her only complaint was a few extra hot flashes the first year. So there certainly are women out there who have found taking it very manageable.

  • MrsDarcy
    MrsDarcy Member Posts: 162
    edited December 2014

    No problems to report now ! Had a few issues with "staying" asleep when I first started and the occasional "warm flush". Now - nothing. Not everyone has SEs .. although I admit I was petrified as well to start but doing fine :) I am also pre-meno so sometimes what I might attribute to Tamox could be tell-tale signs of menopause trying to sneak up on me ;)

    Good luck !!

  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited December 2014

    I took it for two periods of five years. Apart from some night sweats it was fine. To be honest I think this is the case for most people who take it. It's only those that have problems that seem to post on the forums. I would take it again in a heartbeat but my oncologist thinks My Cancer is now resistant to it.

  • NineTwelve
    NineTwelve Member Posts: 569
    edited December 2014

    Tamox is kicking ass on my tumors, so I'd take it even if the side effects bothered me. But so far, it's just some warm flashes and a little trouble sleeping. Oh, and an intermittent discharge (sorry, but I have to make a full disclosure) that seems odorless and can be managed with panty shields.

    But I am over 50. I wonder if the women having trouble with it are the younger ones, mostly? Their hormone levels would be higher to start with, and they might have the bigger adjustment to make.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2014

    I'm not taking it but have a co-worker, 43 at dx., who has been taking it for 3 years. She has NO problems with it at all. She actually likes it because she's always been cold and finds she isn't quite as much so since starting tamox.

    Good luck with the rest of your treatment!

  • badger
    badger Member Posts: 34,614
    edited December 2014

    hi Erica, I was 50 and in peri-menopause when dx.  Been on tamox 4.5 years now, with few side effects.  Hot flashes, yes, but those started when chemo kicked my ovaries' butts and sent me into full menopause.  They were bad at first, and I had night sweats to the point where I would keep a stack of t-shirts next to the bed so I could whip off the wet one and put on a dry one.  They've tapered off but I still keep the house cool and carry a folding hand fan everywhere. 

    The worst SE is wicked foot & leg cramps, especially at night.  Luckily, the bar of soap trick works for me.  I heard about it on The People's Pharmacy, a program on public radio.  There are several links if you google.

    I also take levothyroxine, 0.125 mg daily.  Feel free to PM me for more info.  Good luck!  ♥

  • sundermom
    sundermom Member Posts: 463
    edited December 2014

    I have taken Tamoxifen for 3.5 years and had no issues at all. In fact, I happily take my pill every night and am thankful we have such a great weapon in the arsenal. I'm told I'll be taking it for 10 years. My gma (a 20 year survivor) took it for 15 years before deciding it was no longer necessary when she turned 90. Lol

  • annika12
    annika12 Member Posts: 433
    edited December 2014

    I have no issues !!!! Just found out today my thickening of the endometrial wall is more age and chemo then tamoxifen use !!! I had a few se as my body adjusted to it !!!!

  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited December 2014


    I have only been taking it for 6 weeks but seriously, I haven't felt a thing.  I occasionally have hot flashes at night but I was having them anyway, so I'm not even sure they're due to the tamoxifen.  I feel like that little pill is the weapon I have against the cancer so I'm happy to take it every night.  I didn't even want to know what the potential SEs were going to be because I might imagine them. 

  • Annette47
    Annette47 Member Posts: 957
    edited December 2014

    It will be 2 years in April for me and so far so good. I have had some mild side effects (occasional hot flashes, occasional leg cramps which magnesium helps, and my hair isn't as thick as it once was) but aside from the anti-cancer benefits, it has also helped dramatically with some of the peri-menopausal symptoms I had been having (short, heavy cycles, painful fibrocystic breasts which would swell and start hurting mid-cycle and stay that way until after my period). All in all, I much prefer how I feel while taking it than how I felt before starting it!

  • edukes1002
    edukes1002 Member Posts: 47
    edited December 2014

    This is really encouraging.  Thank you ladies.  I am willing to do it, but I just don't want to feel awful for the next 5 years and all you read about is the problems.  I know there is risk with every lousy choice we make, but I would like to hear some encouragement too. 

  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited December 2014

    I also took tamoxifin for 5 years, - no side effects.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited December 2014

    It's good to hear some positive experiences with Tamoxifen. Seems all I've heard is horror stories.

  • GG27
    GG27 Member Posts: 2,128
    edited December 2014

    I took it for 2 years with no problems, then I was given a different brand & had nothing but pain & terrible hot flashes, dry mouth etc, that went on for about 3 months til we figured out that it was the Tamoxifen & I went on another brand for 3 years & had no problems again until it stopped working for me. Should be very well tolerated, but if it's not, just try a different brand. It's quite often the fillers that you have problems with, not the actual drug. GG

  • CAS4
    CAS4 Member Posts: 54
    edited December 2014

    as one anxious about starting tamoxifen in two weeks I greatly appreciate all of YALL putting in your positive experiences! Thank you!

  • juneping
    juneping Member Posts: 1,594
    edited December 2014

    I have been on tamxo for 10 months so far very mild SE at the beginning.

    A lot of vivid dreams and hard to stay asleep. But they went away. Recently have been having some warm to hot flashes in my sleep. Just had a sonogram of the e wall and it came back normal.

    My MO told me the first two to three months determines how well you body adjust to the med. And exercise helps to subsides the SE. I had some joint pain at my knees and now they are better.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2014

    I saw my internist(pcp) last week. She tells me that she has 30 patients on Tamoxifen. None of the others are having SEs like I have. I've completed just over 3 years & trying to hang in there. maybe you'll be one of the lucky 29 & have no problems. It's certainly worth a try!

  • Scotty
    Scotty Member Posts: 18
    edited December 2014

    I was on it for 3 years with no problems. It doesn't work for everyone though. Read up on light at night and tamoxifen resistance.

  • Daninayd
    Daninayd Member Posts: 58
    edited December 2014


    I have been taking Tamoxifen for 1.5 years. I did not have any issues. The positive thing is that after having an adult acne all my life my skin is finally perfectly clear.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015

    I've been taking it just under two years, but I do have Corale's endometrial issues, and I was having major joint pain and swelling. For the past month I've been doing the bar of soap thing, started a glucosamine chondroitin supplement, and started my new prescription of Tamox and they switched me from Watson brand, to Mylan. I have no idea what worked but as of now my joints are great and I am pain free for the first time in many months. Woo Hoo!

  • Loral
    Loral Member Posts: 932
    edited January 2015

    What brand of Tamoxifen caused the most joint pain. I've been on it for 2 years and the brand I take is TEVA. Is there a better one?, I do have leg and knee joint pain, also terrible cramping.

  • Lojo
    Lojo Member Posts: 303
    edited January 2015


    I've been on for a year with really no side effects. A few warm flushes at the beginning (mostly in feet/legs) but not now. My periods are further apart now, which I view as a positive! But that could be age, too. My doc also said she had no SEs either (a similar dx and treatment to me). I

  • edukes1002
    edukes1002 Member Posts: 47
    edited January 2015

    Thanks everyone for your input.  I just purchased a few vitamins that one of my cousins said helped her side effects.  Vitamin E and Vitamin B6 if anyone is curious.  I also purchased Fish Oil Supplements (for dry skin).  I see my oncologist Friday and will bring all of this to show her and make sure its ok before I start.  Then its off to a nice dinner with my husband before I down the 1st pill on Saturday.  A friend of my family's is a former oncologist and says Tamoxifen is well tolerated and I should go for it without hesitation.  I realize that the people who are most likely to reach out for help are those who are embarking on this journey (like me) and those who have trouble.  Its nice to hear that things can also be ok. 

    Thank you for your feedback! 

    Erica

  • edukes1002
    edukes1002 Member Posts: 47
    edited January 2015


    OK ladies!  I picked up my first bottle.  They gave me the Watson Brand.  I'll start tomorrow....pinch my nose and hope for the best!

  • Carynbrit
    Carynbrit Member Posts: 51
    edited January 2015

    Good Luck Edukes!


    Well. Iim glad I found this thread too.. Iive been hauling myself through the other threats..and was really pleased to see the ' doing okay' posts in here! I'm due to start sometime soon... finishing up rads first then on with it. Would still ike the numbers (precentages) on benefits to me from the dr (using score) ..but this threads helped to take the sheer fear out of it.

    Interesting on the different brands.....



  • Runnergirl36
    Runnergirl36 Member Posts: 16
    edited January 2015

    Hello All,

    I started my first bottle last Monday 1/5/2015. So far so good! I heard a lot of horror stories. Most everyone i know that had to take a replacement had to take Armidex because they were older. One person i know that was younger who took Tamoxifen was taking it for over 2 years when her hair started thinning really bad. I wish you all good luck and keep me posted how you are doing.!

  • Traveltext
    Traveltext Member Posts: 2,089
    edited January 2015

    Good news from a guy. No SEs after three months on Tamox.

  • SuC
    SuC Member Posts: 55
    edited January 2015

    been on it for 18 months. Some hot flushes (think that may also be my age) but otherwise no problems

  • CAS4
    CAS4 Member Posts: 54
    edited January 2015

    I am starting Tamoxifentoday!

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