letrozole

Hi I am new to this forum, I was diagnosed with breast cancer May 2019.  Had lumpectomy June 2019 followed by 15 radiotherapy treatments.  I am now taking Letrozole.  I have always been an active person but since starting on letrozole I am constantly tired.  If I sit in a chair to watch a tv programme or read I just fall asleep!  I have a bakers cyst and my ankles, knees shoulders arms ache.  I am so hot in bed it is unbearable on times.  I also seem to have developed tinnitis.  I was dealing with a trapped nerve in my lower back previous to my breast cancer diagnosis and that seems to have got worse.  I have also put on a lot of weight and have low mood swings.  I was told as my cancer was hormone related I would need to take Letrozole for 5 years maybe longer.  Having read up on it it appears it is an oral chemo drug.  My poor hubby is losing patience with me as he seems to think I have had the operation etc and I should be myself again.  Am I the only one or are these adverse symptoms of Letrozole?

 

  • Hi there ...

    Your deff not alone ... it's a subject that comes up a lot on here ... I had my masectomy in 2017 .. and was put on a drug much like letrozole... was told a milder one we to my arthritis... 

    I did it for 2 years , till l had no life ... could hardly move ... emotional rollercoaster... so I asked what benifit it would give me, as like you, mine was hormone related ... 

    I was told staying on it, would give me roughly 3 to 5 percent better chance of none reacurance... I weighed up all the side effects and realised I maybe one of the lucky 3/5%  .. but the thought of 3 more years in that much pain ... for me was a no brainer ... I'm sure there's lots that want to keep taking it, who can live with any side effects... and I think it's everyone's choice that only they can make .. 

    Personally I came off them very slowly .. and slowly those effects wore off ... I still have my arthritis pain ... but I can cope with that .. for me it was the right decision... so I'd say, do your homework.. ask your oncology team the percentage and weigh up all the pros and cons ... because whatever you decide has to be right for you .. if only we had a crystal ball ... Chrissie.....

  • Thank you so much for replying, I feel a little better knowing I am not on my own.  I will as you suggest speak to my oncologist and the nursing staff.  My cancer was stage 1 cancer and it hadn't spread to my lymph nodes.  It is difficult to take everything in when you are still reeling from the diagnosis.

  • Hi there I am in a very similar situation.to you, diagnosed around the same time and had lumpectomy and 15 radiotherapy sessions. Was started on Anastrazole in September 2019, initially ok. Then started having very bad joint pains around Jan/Feb 2020. Have now changed to Letrozole two months ago and the joint pain, clicking and discomfort is much worse now. Had my one year check with the Consultant recently who advised not to stop taking the medication and to take it for the full five years. I find that if I can keep active my joints are not as bad but as soon as I rest in a chair I stiffen up. Also finding my legs ache really badly in bed at night.

    It's pretty miserable really. Have never suffered with joint pains before this. Having a cortisone injection into my worst knee this week but not sure if that will help.

    just wanted to say you're not alone and willing to chat any time if you like.

    Best wishes Mary 

  • Hi Mary, thank you for replying.  It does help seeing others are having the same problems and it isn't just me.  My husband's aunt was diagnosed in 2005 and she said she stopped taking the medication as apart from the aches and pains it caused it made her put on weight.   She is still okay after15 years.  I am going to speak with the dr.  It is so debilitating.  I am in pain standing, walking or sitting and unable to sleep in bed as I get so hot and uncomfortable.  Thank you once again.