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

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  • glad I read this. I have been on anastrozole 3 years and complained of joint pain. Was given a month rest then put on letrozole. Oh my god been on it a month and I just want to lie down and die cannot take this pain any longer day and night. Constant headache shoulders hips knees feet hands. And I have a good pain threshold. Not taking it again 

  • Update my Doc took new blood test after I stopped taliking Letrozole. My liver enzymes had risen whilst on it, they went back to normal once I stopped taking it! . No more Letorzole for me, still have bone pain 

  • Thank you for your help wonder if you could tell me how soon after taking letrozole do you see a consultant and what to expect when your do do you have another scan or what

  • Some on here have said "if it gets rid of the cancer".  My understanding of these drugs (Letrozole, Anastrozole, Tamoxifen, etc) is that they are hormone therapy, ie., the opposite of HRT.  They suppress oestrogen (Tamoxifen lets a bit through to the bones/joints, hence why I'm feeling better on it), which in my case, fed the cancer.  They're also meant to bind up any stray cancer cells so that our own immune systems can deal with them.
    I know some people are prescribed them to shrink a tumour before surgery too.  I would think most of us have been down the route of surgery, radiotherapy and/or chemo and then these hormone therapy drugs.  My understanding is the drugs don't get rid of the cancer, they inhibit ideal conditions for cancer to develop.

    Judpet, if you've been put on Letrozole & don't know what happens next, I'd get in touch with your breast care nurse or consultant to find out.  I'm wondering if your age has made it more appropriate not to have other treatment, in which case, if you're suffering on Letrozole, you have to consider your quality of life & perhaps get moved onto something better or stop it altogether.  One thing I do know is, the side effects didn't improve with time, they got worse, in my case.

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    Hi Judpet,

    I suspect that my experience may be different from the norm, as I had already been taking Tamoxifen for a year before I started on Letrozole.  I started it immediately after my double mastectomy and saw the surgeon a week after surgery and then 3 months later. After that it was 6 months and now I am reviewed annually. If however, you have been left and are not happy with the Letrozole, that is what your breast care nurse is there for. Give her a phone. Chances are that she will give you an appointment to see the oncologist again.

    I hope that she can do something to help you out. Please let us know how you get on.

    Kind regards,

    Jolamine xx

  • Thank you for your help I have been in touch with the.breast care nurse anc have got an appointment for 23december could I ask you if the letrozole does the job it’s supposed to do and actually shrinks the cancer w hen you go for your annual review do you have to have an ultra sound every time 

  •  

    Hi Judpet,

    You'll feel happier to have an appointment now. This gives you time to draw up a ist of questions, or anything that you want to have clarified.

    Letrozole should shrink the cancer before surgery. The cancer should be away after surgery and Letrozole should prevent it from coming back. How well it works all depends upon what type and stage the cancer is, as well as the age and general health of the person involved. I used to have an ultra sound each time I attended for review. Now it is only a physical examination, but I have always had an ultrasound any time that I suspected something was amiss.

    Kind regards,

    Jolamine xx

  • Hi Jolene was just wondering while you were taking letrozole tablets if you felt nauseas at all and if so for how long did it last did you have any other side effects too I have found I can’t sleep properly now and always feel sick in the mornings what was your experience of letrozole tablets kind regards judpet x

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    Hi Judpet,

    Yes, I have been nauseous with both Tamoxifen and Letrozole. I stopped taking Letrozole in July 2017, but still have this problem. I now take anti-nausea tablets instead. I had a host of side-effects which are well publicised in previous posts on this site.

    Kind regards,
    Jolamine xx

     

  • Hiya claireBr in your post dated 15 December you said the side effects from letrozole tablets didn’t improve with time they got.worse are you still having bad side effects now or have they got a bit easier for you and which side effects do you have 

  • Could you tell me what is the name of your anti nausea tablets and do they stop you feeling sick thankyou 

  •  

    Hi Judpet,

    I have tried a few, but the best for me so far is Ondansetron. I would say that they reduce the nausea, rather than stopping it.

    Kind regards,

    Jolamine xx

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