letrozole and side effects

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Hi 

Once again went to bed at midnight and now 2am and I'm wide awake.

Since taking letrozole I've had a miserable time got sweats,headaches that feel like I'm being kicked in the head by a horse,aching bones, nausea and now a mouth full of ulcers. This is torture my moods are up and down and I'm afraid I'll have no friends left by the end of the 10 years in going it be taking this damn tablet...I'm living on painkillers and never felt so miserable in my life.

If one more person tells me to get over it I think I'll scream.

My oncologist has been my rock and he said taking tablets is a must and to tell people how I feel but they don't get it they think that now cancer is gone I should be back to normal but it don't work like that 

Is any one else suffering and any advice which doesn't include cheer up would be great.

Thanks for taking time to read the ramblings of a few up old woman(63) feeling like 83.....

  • Hi  Geordie1619. I'm also taking Leterazol have been for 5 years... 5 more to go i didn't even link my abnormal sleeping pattern to Leterazol but reading your post I think I'm having the same problem I  also suffer regularly from mouth ulcers and had put that down to my bad eating habits bit it sounds like its a Leterazol thing.. 

    It's miserable isn't it Confused I tell myself its worth all the side affects as its keeping me alive.

    I take amitryptaline at night to help with sleep and it really helps. Have a chat with your GP. 

    Wishing you well Hazel x

  • Hi Geordie1619, Snap ! I was asleep by midnight, woke up c 2 am and am now wide awake. 

    Have you tried taking a different brand of Letrozole ? Or a different aromatase inhibitor ? 

    I started off on Letrozole (Accord). Was fine for six months, but then developed muscle and joint pain. I was switched to Exemestane. After ten months, my muscles and joints are mostly okay, but I have difficulty getting back to sleep. 

    I think everyone on this forum knows we don't "go back to normal" as soon as treatment ends. In our case, we are now on drugs which change our lives. I'm only 60, but I'm a grumpy old woman Smiley 

  • Hi 

    I am now going into my third year of taking Letrozole so just under 8 to go! 

    I found a brand that is slightly better and am trying desperately to stick with it. Apparently there are 18 brands. I am sure there may be one better than this one but I am reluctant to change as one time I did for two months I had a frozen shoulder which needed hospital treatment and tendonitis in my wrist. I know it's the same drug but it's the fillers, colours and preservatives which are different and can cause bad side effects. It is a pain trying to stick with the same brand my GP states it on my prescription but sometimes I have to ring round different pharmacies to see who has it in stock. We are all different and it's not one size fits all.

    The lady who has changed to exmestemeane I was told it has steroids in it and steroids and sleep not always a good match .

    Good luck ladies like you say I am 69 but feel 80 but better than the alternative!

    Heart️

  • Thank you, Janemb. I'd forgotten Exemestane has steroids in it. That makes sense.  

  • Well said everyone! I’m on Anastrozole, sixth year out of seven. On the one hand I really can’t wait to stop popping the pills, on the other hand I’m going to be scared that I’ve lost that safety net, even though I’m well aware that it only reduces the risk of recurrence, no guarantees in this game! 
    Just thought I’d mention that a friend at my exercise class (we’ve all had cancer) told me that her oncologist said during a discussion about her many side effects (from Anastrozole) well you do realise that you’ll feel 10 years older while you’re on them…. At least he was honest! I definitely feel like I’m ‘older’ (65, started on the tabs at 59), even though I’m much fitter in many ways than I was pre diagnosis. But always tired, often aching, hot flushes worse than during my ‘real’ menopause, sleeping and digestive issues. 
    Gems of wisdom? Not sure I have any! Mainly I’ve learned to say no to things I really don’t want to do, and see a lot less of particular friends, especially in groups as I prefer one or just a few at a time. If they drain you more than they sustain you, avoid them! Walking is my main sanity saver, often accompanied by a cafe visit. I think I’m quite boring these days but I really don’t care. Love and hugs, HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • I was just thinking…… I might start only doing things that make me happy!! Which includes starting to only see the people that make me happy!!

    I know you can’t always control that - but I’m determined to start getting a bit more selfish!! Reckon we deserve that!