Struggling with letrozole

Hi, after op chemo radiotherapy I’m now on letrozole for 10 yrs and I’m struggling.... ( breast cancer) I have usual menopausal side effects but the main ones for me are that I’ve developed peripheral neuropathy. The pain in my hand arms and feet actually makes my life hell.... I’m so tempted to say stuff the tablets and get myself to the way I felt before cancer or risk it returning..... my family and friends say to carry on as obviously they don’t want me to be ill again but ohhhhhhh I’m so tempted as I feel like *** ️ Sorry for language but that’s just how I feel. I work in a school my memory is shot I sweat and omg have I gained wait!!! I actually feel selfish moaning as I’m still here right but even as I type this my fingers hand and arms feel like their on fire... thanks for listening

  • Hi Gizzard

    know you’re not alone, there are a number of posts on here saying the same thing. I’m on tamoxifen and have similar, some days I feel I’ve aged 20 years. For me it’s the night sweats as I’m up during the night trying to cool myself down and haven’t had a full nights sleep in months. I used PREDICT and saw that I’m only getting 1% benefit from taking tamoxifen and do sometimes question why I continue to take them but I’ve lost to loved one to breast cancer in last 5 months so I’m going to keep at it as that 1% may make a difference to me living or dying. 

    I have been put on clonidine and it has lessoned the number and severity of hot flushes - have you raised this with your oncologist/GP?

  • Hi [@Gizzard40]‍, you are certainly not alone, and I think it is quite normal to wonder whether it is worth continuing. You have been through so much, but all of that passed, whilst this is ongoing. I have been on tamoxifen for a year now, and the joint pains are horrible. Most mornings I wake up stiff and sore, and the thought of getting up is almost too much effort. Not good since I'm working! I can't do some of the creative things I used to do because of my sore wrists and fingers, and even just going about normal day-to-day things hurts. I can hardly bear the thought of another 9 years!

    I agree with [@Magpiemaggie]‍  that it's worth raising with your oncologist or GP. They must be used to questions like this and may be able to help. My friend has had less side effects since she changed to a different brand of letrozole, so you might want to try that.

    It's not easy, is it? 

  • Hi

    i can so relate to some of what you saying. Been taking since January and side effects 

    hot and cold flushes night and day changes like the weather

    aches of the joints feel like I’m a cripple getting up in morning and if I sit down too long 

    I have asked consultant if they can change they said honest answer yes but all the others still have side effects 

    My family have been great but dam if hubby or daughter tells me to sit down one more time and not over do it you would think I’m a 90 year not 50

     

    i know we we should be all greatful but feel so frustrated thinking will I ever feel like me again and considering stopping tablets 

     

     

  • Hi , I’m 50 aswell and feel like I’ve aged 10 yrs  got docs appt Friday to ask for more painkillers and to see if I can change letrezole, but yes I was told by my oncologist that all have side effects. It’s hard makin the decision to stop as I’ve only been taking mine since December ‘18....... another 10 yrs of feeling like this??? Thanks for replying though at least I know I’m not moaning about nothing Lol xx

  • Hi all, I've been on amitriptyline for 15mths now breast cancer and omg the pain in my joints are soo bad, waiting for a oparation on my wrists as got carpel tunnel, trapped nerve in wrists, trapped nerve in spine, also in hip, put on two & hf stone which has caused more problems, also eyesight not too good, not lazy as still do my few cleaning jobs a week but takes much longer, came off tablets 4 wks ago but had to see oncologist Monday and daughter told her I had stopped taking them she wasn't happy but she not going through what I'm going through, she's put me on letrozole now but reading the comments about them are the same symptoms as amitriptyline, thinking twice whether to start taking them xx