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Feeling "blue" on tamoxifen

laurie123 Member Posts: 30
edited March 23 in Day to day
Hello there, has anyone else felt flat, down in the dumps after starting tamoxifen?  I have been on the little white pill 20mg for 2 months now, and my anxiety levels are also quite high, but I do have upcoming scans and alot of worries still.
Any pearls of wisdom for helping to overcome my flatness?  I exercise daily, trying to eat as healthy as I can. In all honesty I do miss a little bit of alcohol to help me relax!!
Thanks ladies


  • Christabel03
    Christabel03 Member Posts: 79
    @laurie123 yesssss meeeee! I find it is so hard to tell whether it is Tamoxifen, or normal stress etc but I know that since I started Tamoxifen in October last year my anxiety has gone through the roof and I do feel quite depressed I guess at times. You have described it perfectly feeling flat, I find some days I am just so flat and others I can be quite ok and then some others just no good at all. 
    I am actually just about to start some counselling as I think dealing with the "cut free" feeling after finishing treatment has not been easy for me and then factoring in how Tamoxifen is making me feel I just felt like it was time to offload. 
    There was a suggestion in a previous post of taking half a tablet morning and half at night which I haven't tried but I take mine at night regardless. It could be worth talking to your Onc about as they can change brands etc if it all gets too much. 
    Sounds like you are doing everything you can, exercising is great I find that helps too. I will be mentioning how I am feeling to my Onc next week when I see her to see what her suggestions are. It is miserable to think that something we have to take for so long makes us feel so lousy. 
    I wish I had pearls of wisdom for you, but maybe it will help just to know you are not alone :)
  • laurie123
    laurie123 Member Posts: 30
    edited February 17
    Hi @Christabel03 thank you so much for your reply.  I really appreciate you taking the time.  It is so nice to feel I am not alone...I am getting teary as I type this....some days I really do feel all alone, so it really helps tremendously and means so much to me.  I too am up and down like a yoyo.  I know I have anxiety that i would have had anyway, but I am sure this tamoxifen is messing with me more so.  I feel I am constantly PMS, except it never goes away.  I am a joy to live with some days haha!!!  I hope all goes well at your Onc appointment, please let me know if she has any suggestions.  I don't see mine until end of April, which will be my first follow up since T, so counting down.
    Thank you again, I hope you have a good day today xxx
  • Afraser
    Afraser Member Posts: 4,190

    Just a thought but anxiety can have similar effects and it may be worth discussing this too. I am still on Letrozole (10 years done in May!) and it hasn’t caused any depression or anxiety but reaction to having cancer (diagnosis, surgery, chemo or other treatment) can take a while to kick in. The prospect of medication for years may be a trigger. It may well be a reaction to Tamoxifen, but possibly a delayed reaction to
    the whole damn thing. Take care. 
  • laurie123
    laurie123 Member Posts: 30
    edited February 17
    Very true, wise words @Afraser.  I do believe that it all has just hit me, after christmas when my radiation ceased and the new year kicked in, and I am facing the prospect of my next scans (1st scans post diagnosis).  I could very well be feeling like this without the tamoxifen. 
    I am starting to feel like I may need something more, my GP wanted me to talk to a counsellor before starting me on any medication, which I have done (Cancer Council have been amazing), but I think I may need something more to get me through this stage of life.  I've never taken antidepressants before but I've never had cancer either. I think my poor hubby and kids thought I'd be through it all, and on the other side, I feel like I am letting them down in that sense, as my journey is only really just beginning...
  • Afraser
    Afraser Member Posts: 4,190
    Your GP may be on the money. I didn’t have anxiety but a number of potentially long lasting side effects (all still with me ten years on but very manageable) left me wondering quite who I was. A good counsellor (ie one who can connect with you as a person not just a patient) is a very good thing indeed. I didn’t see mine for very long but her ability to enable me to investigate what was really bugging me (and it wasn’t so much cancer as the reality of ageing and ultimately death) was and still is immensely helpful. For many people, cancer is the first forceful reminder of your mortality. It can be difficult. The inevitability of one’s mortality (none of us is here for ever!) doesn’t mean it’s easy to grasp
    or accept. For me, greater acceptance meant taking on a new job, a new challenge (at 68), it served to remind me that life is for living! 
  • Cath62
    Cath62 Member Posts: 1,130
    Hi @laurie123, I agree with comments above. I was in tamoxifen for 18 months post chemo and radium. I did get counselling during treatment. Tamoxifen surprised me with the side effects of fatigue, breathless and feeling flat. I would talk to your oncologist about it. However for me the fatigue and breathlessness got out of control and also impacted my mood. My oncologist gave me a 6 wk break and started me on Letrozole. Omg what a difference. It isn't perfect as I have some bone issues but switching for me has been a winner. I think the key here is talking to your gp and or oncologist and perhaps talking to a counsellor too. Keep advocating for yourself to get well. Best wishes 
  • Christabel03
    Christabel03 Member Posts: 79
    @laurie123 you are so welcome, it is so hard to navigate everything that comes with cancer and everyone here has some really valid points and good ideas. I will let you know what my Onc says next week as this is my first visit as well post treatment. I have read quite a few peoples posts on here that say they switched off Tamoxifen and it was a noticeable difference, so it could really be worth a discussion. Anything to not feel so flat and teary all the time! 
    Hang in there xxx
  • arpie
    arpie Member Posts: 7,003
    Hi @laurie123 & @Christabel03 .... Tamoxifen is the only AI that I HAVEN'T tried!!!   

    I started on Letrozole nearly 5 years ago & only lasted 6 weeks (extreme aches & pains) ..... then Exemestane for 6 months & been on Anastrozole for 4 years now .... and going much better.   I am even considering continuing for another 5 years (after discussing it with my onc at my next appt.)

    Have a chat with your Onc & see if you might be able to try one of the others ... there is no harm in 'trying'. 

    Good luck xx

  • TonyaM
    TonyaM Member Posts: 2,818
    Hi @laurie123, it’s not you,it’s Tamoxifen. Hot flushes,sleepless nights and low mood- the only thing that got me through was a VERY low dose antidepressant called Endep 10mg. It didn’t give me any side effects and took the edge off all of the above symptoms. Unfortunately these anti hormone drugs are a necessary cruelty.You’d think we’d been through enough.Talk to your oncologist because you shouldn’t have to suffer.
  • laurie123
    laurie123 Member Posts: 30
    edited February 18
    You nailed it re the mortality @Afraser - it really hit me in the face and my husband tries to understand, but I don't think you do get it until you are there.  It has levelled me, and I am running scared.  The confident, fun-loving lady has left the building and I feel very fragile and uncertain.  
    Thank you so much everyone for your replies and advice, it means more than I can put into words. @TonyaM thank you I will bring it up with my Oncologist.  
    My husband and kids deserve me back again, after all we have been through together as a family, I feel a let down to myself and to them and I see a little window of light and a snippet of my old self (like immediately after exercising with the endorphin rush), but then it's gone and my flatness returns. Saturday morning a chance to relax and I was a crabby, flat, emotional mess.  
    Thank you all so much once again. I have another counselling session with Cancer Council next week too.
    Thank you ladies xx
  • Christabel03
    Christabel03 Member Posts: 79
    @laurie123 if you are interested my appointment with my onc was interesting. She has said I have to stop Tamoxifen for three weeks to see if the erratic behaviour and tears etc get any less. As I am suffering insomnia as well she thinks perhaps its the tablets plus that making my anxiety and tears and flat feeling all feel worse. She also said of course menopause could also be a huge part. So we are I guess doing a process of elimination to see what is causing what because I just feel a huge hot mess and have no idea what is causing what, I only know how I feel most days. I panicked in the first instance at stopping the tablets but it is only three weeks. She then said I may start back on half only. 
    The only other thing mentioned was perhaps to take a mild antidepressant to counter act the Tamoxifen but at this point I politely declined. 
    I hope you have been feeling better xx
  • lamberly
    lamberly Member Posts: 2
    Hi @laurie123, I have been on tamoxifen for about 3 months and experiencing the same. I've had anxiety for years but on tamoxifen, I find my daily anxiety baseline is higher. I definitely have days of feeling flat and down which is quite unlike me. I had a lot of side effects from the meds.. a constant ringing in my ears is another one! A hearing test is next on my list to book in. 
    I'm exercising every day too, I'm not sure if that helps with my mood as much but if definitely helps keep the fatigue at bay. 

  • arpie
    arpie Member Posts: 7,003
    Hi @lamberly - welcome to the blog!!!  If you go to this thread, there is a bunch of stuff for you to check out - even funny stuff (we all need a laugh!) Also bits if you have furkids, are into art & craft, fishing & a bunch of other things .....  including 'tick sheets' to fill in before you see your health professionals next time.

    I have massive tinnitus/ear ringing & it is a real pain.  I actually use a 'squishy' ear plug in my left ear & it sort of halves the 'canaries' so I have a better chance of sleeping, at least!  I also take a bit of 'magic oil' too and that definitely helps too!  My hearing tests indicate there is nothing wrong, even tho I know that one ear is much 'better' than the other!  grrr

    I am not on Tamoxifen tho, so can't blame IT! Ay yi yi!

    Take care - if you feel 'too blue'  make sure you ring our help line on 1800 500 258 or contact your breast care nurse to arrange an appt with a counsellor or Psych so they can give you 'coping mechanisms' xx
  • laurie123
    laurie123 Member Posts: 30
    Thanks ladies for your replies - extremely appreciated.
    @Christabel03 thank you for the updated, I hope the 3 weeks goes well for you.  Will be interesting to see how you feel on your T break.  If you can, please update, it may be something I need to also look into trialling xx
    @lamberly sorry to hear you are also struggling with anxiety.  I too am a born worrier, but this is next level. With my 1st upcoming scans, I am not sure I am strong enough to face. Insomnia is kicking in with me too, although I exercise daily.  The struggle is real hey. Big hugs to you also xx
    I had another counselling session with cancer council, when she asked me a series of questions it made it cement in a little more when I answered how often do you feel down the past 2 weeks, the answer is daily.  and losing joy in things I used to enjoy.  Not all day every day, but definitely daily.  I want to be ok and I know I will never be my old self, but I want to feel a little joy each day, I don't quite know how to put it into words,  I really do think I may need some extra help more than I can achieve on my own through my own measures, I am meeting with my onc this week to discuss and see what his thoughts are. 
    Thanks ladies, have a great weekend :-)
  • iserbrown
    iserbrown Member Posts: 5,375