Not coping with taking my letrozole medication after breast

omg where do I begin had a lumpectomy 13/12/16 results 2 weeks later back in 10/1/17 for second operation again 2 weeks later back for results back in 7/2/17 for mastectomy all this was fine  it was like a rollercoaster didn't have time to think about myself only how my family would cope etc then a month on I started taking letrozole and bang I have never felt so unwell is this normal? Has anyone else experienced awful side effects from this tablet?

  • Hi, I have been taking letrozole for just over a year now. I didn't really have any side effects at first. The last few months my knees have become very stiff. Also during the night my knees seem to be burning which makes me very restless and unable to sleep. I am back to see the oncologist next month so I will ask what can I do about these aching and restless legs, if anything?

    The other thing is which I am not sure if connected is my toe nails are terrible, they haven't recovered from the chemotherapy.

    What affects are you feeling?

  • Hi Audrey thanks so much for replying I'm experiencing very swollen feet & hands a terrible metal taste in my mouth & very tired but unable to sleep properly & awful sweats

  • Hi, you are very welcome. I do get very hot during the night too. Have you mentioned it to your oncologist? 

    Not nice side effects at all, I don't know if there is any other options for us. I think I will be afraid to stop tablet.

    Do you have any problems with weight gain? I just can't loose any weight at all.

  • Hi ,I feel similar symptoms,I have been taking letrozole for 2 years and I have terrible pains in my bones ,night sweats , restless legs and last year my toes nails went brown , at work some days Iam exhausted by the afternoon ,i am afraid to change tablets as letrozole is supposed to be a good tablet .
  • Hi,

    I have been taking this medication since May 2017 and everything seemed o.k. until I eventually had a lump and some lymph nodes removed in November 2017 and then I noticed I was sweating excessively and my joints and muscles ached.  My doctor said it was the letrozole and then so did my oncologist, who offered me Tamoxifen as an alternative.   However having been told that letrozole was the best medicine for me I decided to persevere with it and my doctor prescribed an additional medicine to try to reduce the sweating...so far this has had no effect, but I shall give it another couple of weeks before I give that pill a miss.   I don't dare leaving letrozole off, but would love to, just to see if the pains in my joints and muscles go away and the sweating stops.   I am also very worried that the cancer will pop up in other parts of my body...I guess I read too much about it and perhaps should just get on with my life and consider myself lucky that they found it early?

  • I have been taking letrozole since July my neck and shoulders ache really bad all the time what would happen if I stopped taking these pills.

  • Hi Pat, 

    I'm sure you'll hear from the other members in this discussion soon but I just wanted to suggest you speak to your doctor before doing anything as they are in the best position to answer this question and any others that may be playing on your mind at the moment.

    It can also be dangerous to stop any medication suddenly and without letting anyone know, so do book in to see them when you can if you're really struggling.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hi,

    Have been on letrozole only a week now. was on exemestane, but found my sense of smell has completely gone. So the oncologist put me on Letrozole. 

    I feel so unwell with having to take these. Aches, tiredness and so fatiqued.

    Have gone through shingles as well which has lasted for about 9 weeks.

    I just wished I didn,t have to take letrozole or any other. I,m even sleeping through the day.

    I feel that I can,t go on another 4 years on these, and feeling like this

  • I was very interested to read your post on letrozole. I had a lumpectomy and 17 lymph nodes removed last July. I was put on letrozole and immediately my arthritis pain tripled. The pain in my legs and knees was unbelievable. I am on steroids to help with the pain from the letrozole. I feel sick and fatigued a lot of the time. The thought of another  3 1/2 years on these things depresses me a great deal.al

  • I also have severe pain in my joints sometimes so bad I could cry , I seen a consultant who was really nice he said only option was to come off letrozole which won’t happen, it’s so unfortunate to have tumour removed only to have joint pain I have been on letrozole for  41/2 years