Letrozole

Hi

I am having a hard time with letrozole. I have been on it 18 months but still depressed and  weepy some 6 months after radiotherapy ended. Also have gut problems for last seven months since start of radiotherapy though doctors say it is unrelated. I am drug sensitive and have autoimmune disease  so changing drug is difficult. I tried Anastrozole for a week but had headaches every day.

Anyone experienced these symptoms after being on Letrozole for a while. 

Thank you.

  • Hi 

    So Eliza8 sorry to hear how you are feeling whilst taking letrozole . It's nearly 3.30 am and I'm still awake which happens every night . I have been taking letrozole for 2.5 years . I have terrible hot flashes . Some days are worse than others . Yesterday and throughout the night they have been happening every 20 mins . About 2 minutes before each one I suddenly have a drastic dip in my mood and a sense of doom. It's a horrible feeling - I dread it happening . Sure enough it means the hot flash is coming . I sleep with a fan on my face each night . The sweats honestly are unbearable. I have mentioned this to my oncologist but I have already tried other drugs which made every joint ache - even the ones in my fingers and hot flashes too. I have noticed that this week I opened a different package / brand than usual . Honestly, I don't know if it's because of this but I feel I can't cope with the hot flashes and mood changes. I have terrible restless legs too . I just dread night time so much now . I'm lucky if I get a couple of hours sleep if that . I know I have to take the drug as it decreases my chances of cancer returning . Just don't know what to do with myself

  • Hello Saffie,

    I only started taking Letrozole about 3 weeks ago and I take it every other day. So far no hot flushes and no joint pain. If that happens I will stop it altogether. No idea if it will be effective on a half dose  but it's what I feel I can do. I have always been against taking hormones. Anyway giving this my best shot!  
     

    The sleepless nights (like tonight!) are an occasional thing for me anyway so I cannot blame Letrozole for that!! I take the branded Letrozole 'Femara'. Many people tell me it's the best one to take but GP's are very reluctant to prescribe it owing to the cost of it. The generic one is a few pounds. Femara is about £170 a month. A considerable difference. I have to pay for mine on a private prescription as where I live I cannot be prescribed it?  Outrageous really. 
     

    Anyway hope your experience of Letrozole improves soon. I am hoping I go on in the way I have started. I want to live of course but equally I want a quality life not one that's made hellish because of the treatment!!

     

    Keep me posted. Take care. 
    Kebbs 

  • Hi sorry to hear u are suffering  I've been on letrozole sincefebruary   butnow I'm getting bad pains in joint and muscles also my sweats are bad   did u find this on letrozole x

  • Yesterday I have started ( just yesterday in fact!) to have bad lower back pain. Never suffered with a bad back before. Not really sure if it IS the Letrozole but I feel it's likely. I also think I am getting a bit emotionally 'flat' but again I am not sure. It could just be about being a bit fed up with this covid world?!! 
     

    Sweats aren't really an issue for me. I get what I might describe as 'warm' at night but nothing more than that.That's probably because I am old!! 68 on Monday. It's bound to be more difficult if you are in your 50's I think. 
     

    Take care. Please let me know how you go on. 
     

    cheers 

    Kebbs x 

  • Hi thanks for reply  I am 66 this year I'm not sure what to do really  these side effects at min , how long have u been on letrozole x  anyway it's nice someone spent the time answering  me  happy birthday  for monday xxx

  • Hi Susanu!!

    I only started Letrozole 3 weeks ago! So a novice really although I was supposed to have started them in March! 

     

    I thought I wasn't getting sweats because of my age although that might be right I suppose. Hopefully yours will subside soon. 
     

    The back pain today has been excruciating. It may not be the Letrozole of course but I would take bets on it that it is. Anyway will give it 3 more weeks and then if no better I will take my chances. I want to live of course but living with constant pain isn't really much of winner for me. 
     

    Go well. Thank you re. Birthday wishes! Yes I will have a good day I am sure. 
    Stay in touch.

    Kebbs x 

  • Hi u stay in touch to  , have u had a masectomy   I had my right  breast off in march  that's healed well but now all these side effects  I've got to get my head round it  you take care, chat soon  night night x oh where abouts in country are u x

  • No I had a breast reduction on 1st November 2019 not a mastectomy. Then 15 sessions of radiotherapy. Completed that at the end of February. Now Letrozole supposedly for 5 years. We will see. Must say this hormone treatment is the hardest part for me. I think I am almost 'programmed' against it though!  

     

    I live in the Thames Valley. Where are you??

     

    Kebbs x 
     

     

  • I'm lucky didn't have anything  I had 2 lumps in my  breast so it had to come off    it's still not sunk in properly I dont think . I'm on letrozole same as u for 5 years , I'm in leicestershire, any way off Try to get some sleep  hope u can do the same be nice to chat again , so night night xx

  • So sorry to hear this - It sounds terrible for you. We all need night time to be a time of peace. I know what you mean sometimes I feel I cannot go on like this.