letrozole and side effects

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  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  

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!

️

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

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!

Just to add

i spoke to my surgeon about the night sweats and not sleeping (waking at 3am)

he suggested

sage tincture

cbt

exercise

cold bedroom

makes no difference what time you take it apparently 

there are a couple of meds he suggested if those things don’t work. Happy to put on here if anyone needs. 

i have started the sage and also started reflexology and also started to let stuff OUT a bit more (helped by the fact that the latter plus the letrozole makes my highly emotional!). I do think this has all helped a bit 

That’s a useful list! I love reflexology, maybe I’ll book a couple of sessions. And it’s reminded me that way back in early 2020, a year after my radiotherapy, I went to the Maggie’s centre in Addenbrookes, to ask about counselling as I was feeling so anxious. I didn’t get it as there was such a long waiting list, but I did start a 6 week course of ear acupuncture there. I found it helped with the hot flushes and with sleep - I was still waking but didn’t feel so anxious when I did. And I met a lovely group of fellow hormone pill poppers, 2 of whom are still good friends. So that could be something to look into too. Xx

I knew there was something else he’d said!!

acupuncture!!!!!

Oh my goodness I’m sorry but hallelujah I have some one the same I’ve just joined the group out of frustration and your post mirrors everything I’m feeling right now yes I’m told it will pass but it hard when everyday there is something I was told I have to take it the same as yourself