New to tamoxifen

Jrachelle
Jrachelle Member Posts: 8
edited March 2018 in High Risk for Breast Cancer

I am high risk based on family history and ALH. Gail score 41%.It took me a really long time to start tamoxifen. I was terrified, read way too much. Had to start effexor a month before and now it's been 2 weeks on tamoxifen. I feel no side effects. Now I'm worried I am one of the non metabolizers! I am making myself nuts. I know effexor helps with side effects, so maybe that's it. The only thing I really notice is that I'm chilled and shivery a lot. Do side effects take a long time to start? Maybe I am lucky!

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited February 2015

    Hi,

    My side effects were muscle pains. And hot flashes and night sweats. I had hot flashes during my last two chemo sessions so I don't know when they started because of tamoxifen. The muscle pain started about a week or so after starting tamoxifen. 

    Keep in mind that not everyone has side effects. 

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

    Good for you for being proactive. The main SE of Tamoxifen is hot flashes and Effexor does a great job of lessening those. I don't think the presence of SE or not means anything re: effectiveness. I have taken a thyroid pill everyday for about ten years, now when I take my tamoxifen I put it in the same category and move along with my day. Best of luck!

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  • Lotusconnie
    Lotusconnie Member Posts: 101
    edited February 2015

    Jrachelle, do you mind if I ask you about your age? I am 36 and I have widespread ADH. My MO wants me to wait till I am 40 or 45 to start tamoxifen. And have screening imaging tests.

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited February 2015

    Hi Everyone -

    I am new to Tamoxifen, started it on 1/22/15. By that time, I had already been on the Effexor for a while, after tapering off the Zoloft. I understand that the Effexor is supposed to help lessen the "hot flashes" if that is the case - do you not have them, or are they more like "warm flashes"?


    MarieBernice6234


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  • AlwaysSunny79
    AlwaysSunny79 Member Posts: 65
    edited April 2015

    Hi, I'm 35 and I just started Tamoxifen today for prevention. I had a full hysterectomy in 2010 after genetic tests showed I am BRCA1+. I have had hot flashes and night sweats and mood swings since shortly after my hysterectomy and they are at times horrific. I started Effexor 2 months ago and haven't noticed the hot flashes, night sweats or mood swings as much. It's too early for me to say anything about SE's but I will be following this thread to add my input at a later date. Thank you for starting this thread as I had questions about this!

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  • fluffycats
    fluffycats Member Posts: 35
    edited April 2015

    The chilled shivery feeling is one of the side effects i have had since the beginning with tamox. Warm flushes are occurring more often now that I passed the 3 month mark. I wake up every morning with damp hair--that started after a couple weeks on tamox.

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  • AlwaysSunny79
    AlwaysSunny79 Member Posts: 65
    edited April 2015

    Hi, I am at 4 days on tamox and started to feel nauseous after the 2nd day. I take it in the morning and as long as I have crackers or something light with it then I don't have the nausea. So far, I am doing well with it and don't feel anymore tired than I normally do. I have become more active but I think that's more due to my recent scare. I also take effexor and have read on here that it may help with the extra hot flashes as a SE. I already get hot flashes from menopause but the effexor has been staving those off considerably. So far, so good

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  • AlwaysSunny79
    AlwaysSunny79 Member Posts: 65
    edited May 2015

    I have now been on Tamoxifen for 3 weeks and I no longer get nauseous but I have noticed some joint pain and bruising. The joint pain isn't bad enough for me to take anything stronger than 2 advil and that's maybe only twice a week. The bruising just started this week and looks like round bluish purple quarter sized bruises but I haven't been injured in any way that I know of. I am still doing well IMO and will continue taking it and the low dose aspirin.

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited May 2015

    I've been on Tamoxifen for about 2 weeks now. Feel a bit funny in the head sometimes and nearly fainted at work the other day but I can live with that. However I have been having really strange feelings like I'm getting a really bad period. Haven't had one of those for over a year now as was on Femara and Zoladex injections. I'm 54 and if I start getting my periods again I will really lose the plot. Does anyone know if Tamoxifen can bring about periods again after a long absence. I am also having hot flushes which is weird as I'm not in menopause?

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  • njdolfan
    njdolfan Member Posts: 1
    edited May 2015

    Hi I am a newbie to Tamoxifen, today is my first dose. I have a really big question for any who may know\: I have AVASCULAR NECROSIS or sometimes known as OSTEO NECROSIS and wonder if Tamoxifen could speed up the death of my joint bones? Also, is there a good time to take this med?


    Thanks for any and all to respond.


    GOD BLESS ALL.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2015

    Hello njdolfan, and welcome to Breastcancer.org.

    Did you discuss this with your medical oncologist? Or perhaps with your doctor who manages your avascular necrosis? It is a good question.

    Taken from this page: http://www.breastcancer.org/treatment/hormonal/ser.. (but not necessary relating to necrosis).

    Tamoxifen offers other health benefits that aren't related to treating cancer. Because it's a SERM, it selectively either blocks or activates estrogen's action on specific cells. While tamoxifen blocks estrogen's action on breast cells, it activates estrogen's action in bone and liver cells. So tamoxifen can:

    • help stop bone loss after menopause
    • lower cholesterol levels
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  • AlwaysSunny79
    AlwaysSunny79 Member Posts: 65
    edited March 2018

    I took tamoxifen from April 2015 to August 2015. I didn't have any issues other than bruising and joint pain. I had a stroke August 28th 2015 and just 2 weeks ago found out that the tamoxifen was the cause. I'm not doing anything about it. Just happy I know the cause now.

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  • Egads007
    Egads007 Member Posts: 1,603
    edited March 2018

    I’ve been on it for 4 years. I started feeling as if my feet were beaten with a baseball bat upon waking just 5 days after taking the first pill. Horrific leg spasms bad enough to wake me up in the middle of the night. I literally stumbled out of bed. Hot flashes 2 weeks in...anytime, anywhere, all day long, soaking wet. Uterine polys about a month in which led to a d&c at the 9 month point. Fast forward to the 1 year point and I joined a gym...started with a trainer and never looked back. I lift weights and combine it with cardio, haven’t felt this good in 20 years! Strangely enough over a short period of training time ALL the foot aches and leg pain are GONE. No gyno problems ever returned. Hot flashes are down to twice a day...right after showering or applying makeup (of course couldn’t be at a convenient time lol). I’m convinced that exercise is the key to minimizing Tamoxifen side effects. If I take a break from the gym for more than 2 weeks most of the side effects come creeping back I can’t recommend starting any type of exercise program enough...definitely worth a try!

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  • Paco
    Paco Member Posts: 208
    edited March 2018

    Egads,

    This is such good news about the exercise! I spoke with a (younger) coworker yesterday who was warning me against tamoxifen, saying it made her feel 100'years old. I don't believe she gets much exercise so I might suggest we do something together. I exercise regularly. Hopefully I can sidestep the SEs as a result.


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  • Egads007
    Egads007 Member Posts: 1,603
    edited March 2018

    Hi Paco,

    A workout buddy is a great idea! It’ll help keep her in track....within a few weeks she just may be feeling better...and only 75 years old lol!

    While you may not side step all the SEs I think it’s worth a shot....keep us posted on your progress please! Cheers and all the best for an easy time with good ol’ tamoxifen!

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  • AlwaysSunny79
    AlwaysSunny79 Member Posts: 65
    edited March 2018

    That makes a lot of sense to me about exercise. I wasn't really exercising, but I was walking a lot and it felt good to get outta my head and walk away the negative SE's.

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