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Letrozole

lise3103
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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

  • Offline in reply to Jolamine

    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 

  • Offline in reply to judpet

     

    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

  • Offline in reply to Snowdrops

     i’ve just started reading your comments today is the 18th of December 2019 I was just wondering how you are and did you go back on the medication and if you are what are you taking now I hope you are fine I hope you are okay x Gina 

  • Offline in reply to gina_46uk

    Hi Gina, 

    I am on new medication called Aromasin or EXEMESTANE and have few side effects, nothing like the pains on Letrozole. I have a new consultant, a woman, who was very concerned I was taking nothing.  I have been taking Aromasin for a good while now and it is much better. The muscle aches and leg pains are gone. I had a few hot flushes at first but not now. My new Doctor has seen me three times and now I'm dropping back to 6 monthly. It is worth persevering with telling your Drs you are unhappy. There are other treatments available and after suffering the chemotherapy etc quality of life is everything. I was 64 when I had my cancer, I've just celebrated my 69 birthday, I feel I am back on track and able to enjoy life. Yes I'm tired sometimes but I'm here, and about to become a grandmother for the first time.

    good luck, good health, it does get better. .

    sue

  • Offline in reply to Jolamine

    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

  • Offline in reply to judpet

     

    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

     

  • Offline in reply to ClaireBr

    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 

  • Offline in reply to Jolamine

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

  • Offline in reply to judpet

     

    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

  • Offline in reply to Musiclady

    Hello musiclady I am eighty years old and have been on letrozole six months I find the worst side effect is feeling nauseous and sometimes I have hot sweats but I am hoping the tablets will shrink the cancer so I don’t need an operation hope if you have had a lumpectomy you are feeling ok now let me know how you are doing kind regards judpet

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