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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    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

  • Hi Nora I have also been on letrozole for six months and find the side effects are getting worse did you have an improvement in them or did you stop taking them altogether judpet

  • Hi Judy I too am experiencing so many side effects and thinking of stopping taking it how have you been since you stopped taking it does it take long before you feel normal kind regards judpet

  • I came off them for a month and didn't feel much better.  Since taking them again I feel ok.  I had some relief from joint pain by taking turmeric but that doesn't seem to be working anymore.  I suppose I will just plod on.

  • Hi all,

    My mother has been on Letrozole for 5 years, with some of the side affects others have reported (hot flushes), but still with a high quality of life. Before Christmas, after being put on Statins for the first time to lower chloestral, (which she only took for 10 days) all of a sudden she started to experience severe muscle pain, in her leg, shoulders and around her ribs. She is pretty much crippled now through the pain.

    Has anyone experienced similar, after being on the drug for so long to develop addittional side affects, or perphaps after combining medications?

    We have thought until this stage it was the statins that caused the problem, but after reading this post Im no longer so sure.

    many thanks

  • Best to consult the doctor. My husband had really bad leg pains after taking Statins and had to stop taking them after a week. It was listed as a possible side effect. As it's also a possible side effect of Letrozole it certainly confuses the situation for your poor Mum. 
     

  • 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