Letrozole

Hi I’m new to this forum.  I have had breast cancer twice, 2nd time round was in the same breast.  Because of this I decided to go for a double mastectomy to avoid a “3rd” time.  First time round I was put into Tamoxifen for 5 years, apart from the common side effect of hot flushes & mega weight gain  I felt well on then.  However, I’m now on Letrozole, have been taking them for just over 12 months and am experiencing just about every single side effect listed and more.  Recently I have been getting excessive sweating, dull like growing pain in my left leg from hip to  knee, excessive fatigue and more recently bouts of Vertigo & Tinnitus which are so debilitating I keep having to take time off work.  I’m interested to find out  if anyone else is experiencing this on Letrozole?  I also have aching joints which I can cope with, excessive itchiness all over the body, mainly at nigh but I take antihistamines for that.

With all of this going on it’s making me feel like a complete hypercondriact... is anyone else experiencing all of this and how do you cope? 

I look forwards to your comments xx

  • Hi Viv, 

    My symptoms are definitely getting worse. I read in another chat that an antihistamine can help itching.

    All the best 

    Nora 

  • Hi All,

     I use Eurax cream for the itching and find that this helps.

    Kind Regards,

    Jolamine xx

  • Hi I had a lumpectomy in August and some lymph nodes taken ..Result was all clear ..Great news til they put me on Letrozole nothing but Diarrhea and Nausea every morning til noon.. plus recent blood test shows my Liver enymes are up higher than they ought to be. 

    I have spoken about it being Letrozole but doc just does more tests

     

    anyway I have decided to stop taking it today 

     

     

  •  

    Hi Recovery,

    Welcome to the forum. I am so sorry to hear about the trouble you are having with Letrozole. Have you been back to the breast clinic to discuss this with your care team, or are you just attending your GP? You do not say what age you are, or what type and grade your breast cancer is. All of these factors come into play when you start to have treatment and will influence the eventual outcome.

    There are a number of alternative options rather than stopping Letrozole so suddenly with no backup in place. If you had your lumpectomy in August, you have not been taking the Letrozole for very long. These symptoms often settle down when you've been taking it for a while. 

    If you haven't already contacted your breast care nurse, why not give her a call to discuss your symptoms. I have had 2 bouts of breast cancer. The first was 10 years ago and the second was 9 years ago. First time around I took Tamoxifen, but when I discovered another cancer in the same breast a year later, I went on to Letrozole and, took this for a further 6 years. I had a number of side-effects, but diarrhoea was not one of them, although the nausea certainly was. I found both my consultant and my breast care nurse very helpful and, hope that you will too.

    Do please let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi Jolamine I was put on Letrozole months before having lumpectomy ie March 6 months I have taken it..My end result after lumpectomy was it was grade 1 and all clear. My lymphs were cancer free which i told surgeon as had biospys but he still took 5 sentinel nodes to make sure. I have spoiken with oncologist about side effects and she does not seem interested tbh ..I thank you for your concern and would consider an alterantive but the ciprol Letrozole is worst than the illness in my opinon . but thank you very much 

  • Strange i get pain in the opposite side to the cancer ie my right shoulder really hurts if i reach out for anything so bone pain is an issue with Letrozole . I had left side breast cancer treatment yet my right shoulder hurts on Letrozole and many other things like nausea and diarrhea every morning . Told oncologist but she seems disinterested . told GP they seeking other tests ie have i got infections etc.. i know its Letrozole ..havent felt right on it for 6 months now so stopped it

  •  

    Hi Recovery,

    Have you tried different manufacturers of Letrozole? Some people find that this helps. Sometimes you really have to insist that your care team do something, as side-effects are so common that they sometimes tend to ignore them.

    Kind regards,

    Jolamine xx

  • I had bone and joint pains too with Letrozole, especially shoulders. I now take exemestine, also known as aromasin, and I am much better. 

    There are many alternatives to Letrozole so take it up with your consultant or breast care nurse. Go armed, do your research on here, show that your complaints are legitimate.good luck.

  • Hello , I’m new to this foru. I have been on letrozole now for 8 months. I have really bad knee  pain and stiffness. Is is unusual just to have it in one knee.   Sx

  •  

    Hi Snowdrops,

    I had a lot of bone and joint pains throughout my body too.

    I agree that there are a number of alternatives to Letrozole and, would certainly advise anyone to explore these options before stopping hormone therapy altogether.

    Kind regards,

    Jolamine xx