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

Parents
  • 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 

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    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 

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    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

  • 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

  • Hello judpet. I'm so sorry you've had such side effects. I was lucky until maybe today when I have such a pain behind my eye I can hardly move it. Not sure if it is a side effect or something else.  As you say though, so long as the cancer is shrinking. My lumpectomy is early January. Were you told iyou might not have to have the operation if the tablets work? I wasn't told that. I would certainly consider not having the op if I thought there was a reasonable chance of just stayingon the tablets.   Thank you for your reply, best wishes

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    Hi Musiclady,

    I'm sorry to hear about the bother behind your eye. If this continues, please visit your optician. I wasn't aware of eye problems being a side-effect of Letrozole until I got them. I had 2 catarract operations, then a third as they had tried to correct an astygmatism, but were 25% out in the way they put the lens in. Two years after this I was in bother with my eyes again. I virtually lost the sight in one eye and was fast losing it in the other. I had to stop driving for almost a year.

    I then had laser operations on both eyes and, feel very humbled that I have got my sight back and, am able to drive again. If there is a problem with your eyesight, the sooner it is noticed, the better your chances of doing something about it. If your optician suspects anything untoward, they can refer you to the hospital.

    There are a number of different factors which come into play when considering whether or not to have surgery. I suspect that the doctors may not want to put Judpet through surgery at 80. Age, medical history, patient's general health, along with grade and type of cancer will all be considered before a decision is reached for any patient. I worried about surgery too, but it was the easiest part of my cancer journey throughout the past 10 years.

    I had a lumpectomy first. Then the following year, I had a double mastectomy. I took Tamoxifen first time around and then Letrozole for 6 years. I stopped taking this in July 2017.

    Please let us know how you get on with your eyes.

    Kind regards,

    Jolamine xx

  • Hello musiclady I have just been to see my consultant and he told me after examining me that the tumour had shrunk and was nearly gone and to stay on letrozole for now and go back in three months so thankfully won’t need an operation hope this is of some help to you kind regards

Reply Children
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    Hi Judpet,

    I just had to butt in to say how pleased I am to hear this. Did you mention your nausea when you saw your consultant?

    Kind regards,

    Jolamine xx

  • Yes I told him but he said best to keep on letrozole and not change it as it was doing it’s job and to go to my gp for something for the nausea he said it’s not a common side effect kind regards judpet 

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    Hi Judpet,

    Your consultant has a point, but please discuss your nausea with your GP.

    Kind regards,

    Jolamine xx

  • Hi can I ask you if you stop feeling sick for a few days while on letrozole and then starting feeling sick again do you know how long the side effects last and if they will get easier over time kind regards judpet x

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    Hi Judpet,

    Some people find that they do settle dpown after a while. Sadly I didn't and I still have a lot of joint problems now 2and a half years after I finished taking them. Have you tried different brands of Letrozole? Many can take one particular make, but not another.

    I had both knees replaced while I was taking it and I still feel constantly nauseous. Have a word with your breast care nurse and see what she suggests.

    Kind regards,

    Jolamine xx

  • Thank you for your prompt reply you say you feel constantly nauseas hasn’t that gone off over time and do you still manage to eat normal while you are feeling nauseas as I am finding it hard to eat properly judpet x

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    Hi Judpet,

    I put on a tremendous amount of weight when taking hormone therapy. I have since lost 5 stones and, find that I cannot eat nearly as much as I used to.

    However, I can eat small meals, although there are certain types of food that I cannot eat. This changes frequently, depending upon how nauseous I feel on any particular day.

    I am sorry to hear that you are finding it hard to eat properly. Have you tried eating smaller amounts, but more regularly?


    Kind regards,

    Jolamine xx

  • Hi Jolamine you say there are certain types of food you cannot eat could I ask you what the certain types of food are and why you cannot eat them also do you have any problems with getting a good nights sleep as I can’t seem to sleep for more than four hours on a night judpet 

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    Hi Judpet,

    No cucumber, crisps, cheese, baked potato, fried food, alcohol, pastry, smoked fish, roast beef, sardines, plus a host of other food, which changes according to how I feel at the time.

    You will possibly have noticed by the ridiculous time of some of my replies, that I am a night owl. I need to get up to the toilet every 2 hours and often am awake for quite a while before and after I go to the bathroom.

    Kind regards,

    Jolamine xx

  • Hi jolamine nice to speak to you you certainly are a night owl up at that time I have been awake since five feeling sick I was wondering if I need tablets for anxiety and depression as I worry about everything since been diagnosed with cancer I was wondering if you have been down that route also do you take tablets for nausea every day or just now and again judpet