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 

  • I was on it for the first year then Consultant moved me onto Anastrozole & when I'd had enough of that after 3 yrs, kept coming off it, side effects that bad, was moved onto Tamoxifen & feeling a lot better on it, although different side effects which aren't as debilitating as the other drugs.

    It was the joint aches & stiffness with both Letrozole & Anastrozole that made me a cripple after 4 yrs.  After about 4 months off them, on Tamoxifen, one morning I walked downstairs normally & suddenly realised the stiffness had gone.

    If you're suffering ask to change.  I think the new one Exemestane seems better.

    Just read your post how Letrozole is working for you.  Fantastic news.

  • I asked if I could change to a different one today but consultant said side effects on them all are very similar and seeing as letrozole was doing the job best not to change it 

  • 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

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    Hi Judpet,

    I took anti-nausea tablets all the time when I was taking Letrozole and, now take them as and when I need them. I really do need them every day, but am trying to reduce the number of tablets I am taking, as I am taking far too many.

    I had terrible night sweats when I was taking Tamoxifen and, my breast care nurse suggested that some people benefit from a mild anti-depressant. I was reluctant to take these, but Clonidine didn't work for me, so I eventually succumbed. It made a tremendous difference and, I still use them (Venlafaxine). Most people with cancer are naturally depressed. Although I took this to reduce the sweats, this lifted my mood considerably.

    Have a word with one of your care team or your GP and, see what they suggest.

    Kind regards,

    Jolamine xx

Reply
  •  

    Hi Judpet,

    I took anti-nausea tablets all the time when I was taking Letrozole and, now take them as and when I need them. I really do need them every day, but am trying to reduce the number of tablets I am taking, as I am taking far too many.

    I had terrible night sweats when I was taking Tamoxifen and, my breast care nurse suggested that some people benefit from a mild anti-depressant. I was reluctant to take these, but Clonidine didn't work for me, so I eventually succumbed. It made a tremendous difference and, I still use them (Venlafaxine). Most people with cancer are naturally depressed. Although I took this to reduce the sweats, this lifted my mood considerably.

    Have a word with one of your care team or your GP and, see what they suggest.

    Kind regards,

    Jolamine xx

Children
  • Hi jolamine I have recently started taking citolopram an anti depreeant and now feel worse than I did before taking them and wished I hadn’t.startedon them do you know anyone who has experienced taking this tablet and how they felt kind regards jud pet

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    Hi Judpet,

    I do know people who have got on well with Citolopram, but also a few who haven't. There are other anti-depressants which might work better for you, so please get back to your care team to see about this. Also, be aware that you cannot just stop taking these tablets, you have to come off them gradually, or you will feel really awful.

    I am so sorry to hear that you are having this trouble and hope that you can get it settled soon. I take Venlafaxine and have had no problem with it over the past 9 years.

    Don't forget to let us know how you get on.

    Kind regards,

    Jolamine xx

  • Hi jolamine well tried citolopram couldnt cope with it so came off them was just wondering if when you were on letrozole did your side effects get worse over time or better I am thinking of changing to a different drug as I can’t cope with the sickness any more kind regards petjud

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    Hi Judpet,

    We all react differently to drugs. The side-effects were obvious pretty quickly with me, but remember that I had already been taking Tamoxifen for the previous year. Other side-effects didn't manifest themselves until I was about 3 years into taking Letrozole. At that stage I had to have both knees replaced and had 5 eye operations throughout the following 2 years.

    I am sorry to hear that the Citolopram didn't work for you. There are a number of different anti-depressants and, it's a case of finding one that works for you. You can also get an anti-nausea medication and a pain killer if needed. I hate taking tablets of any kind, but had to take all 3 types to get through the course.  Did you ask your care team about changing to another hormone therapy? It sounds as if this might be the best solution. Why not call your breast care nurse on Monday and discuss this?

    I hope that you find something that works for you.

    Kind regards,

    Jolamine xx

  • Hi jolamine well I’ve changed from letrozole to anastrozol and have been on them a week now and still having the same side effects nausea sweating I think they must all have the same side effects no difference just hoping the longer I am them will the side effects get less hope so as I have had enough seriously thinking of stopping them altogether and getting some quality of life back kind regards judpet 

  • You need to give them 6 weeks for it to get out of your system.  I gave it a month & thought there's no difference, but it took about 6 weeks to notice the difference.

  • Hi clairebr did you just stop taking them altogether without permission from the consultant or did he tell you to. stop taking them did you also have bad side effects from the tablets kind regards judpet

  • Hi clairebr think I might have misread your last post sorry did you mean you changed from letrozole to anastrazol and it took six weeks for the letrozole to get out of your system if so are you ok with anastrozol now kind regards judpet

  • Actually I moved from Letrozole after one year, after complaining about pains & aches, then onto anastrozole for 3 or 4 years (not any better) then moved onto Tamoxifen.  It was only after 6-8 weeks on Tamoxifen that I was able to move again.  I did keep stopping anastrozole myself for a month at a time but because I was doing this the consultant recommended moving me onto tamoxifen which I wasn't keen on because of side effects friends had, but I've definitely been better on Tamoxifen.  I was not going to carry on with anastrozole.  Quality of life was more important than being crippled.

  • Thank you for your prompt reply could I ask when you stopped taking them fora month did you feel any better also my main side effect is nausea did you have that as well I can’t seem to get rid of it kind regards petjud