Letrozole help

Hi ThereShels, I too have been on letrozole for over 2years; have ached constantly all over, bones and joints, and am in no doubt that I have cognitive impairment amongst other things. A different doc has suggested stopping the letrozole for 6wks to see if pain recedes and with the proposition of an equivalent drug. I'm over 3 weeks off it but aches and pains continue. Activity and distraction help, I wish I had a solution but I can only offer solidarity! Xx

Letrozole didn’t suit me, I got an immediate intense headache & my BP rose, so after 5 days it was stopped. I was given a months break & then started on Exemestane which I’ve tolerated better. I have put a bit of weight on but only about 3 lbs & to be honest, thecrisps & chocolate might have something to do with that. Occasional aches, but again I have Rh arthritis so it could be that. On the whole, I feel ok. Maybe it’s because you have taken more of a hit, coming off HRT straight to no hormones. Might be an idea to have a word with your breast team to see if they could advise a change.

Hi ThereShels, sorry to hear about your troubles. This cancer thing isn't much fun, is it ? 

I echo what Jennand says. Perhaps Letrozole has affected you worse than some people, because you went onto it straight from HRT. Or you could just be unlucky. In any event, great idea to talk to your breast care nurse, and the Macmillan support line. Do you have a Maggie's Centre near you ? They're also very helpful.

You have some (limited) options - including trying a different Aromatase Inhibitor. 

I also struggled with Letrozole. I didn't gain weight, but after about 5 months I gained stiff joints and sore muscles. I had started to run as a way of keeping fit and active, using the NHS Couch to 5k app. I managed to run two 5 ks ! Furthest I've ever run in my life. Was very pleased with myself. And thought I would be fine with Letrozole, having had no side effects.  

But then it all fell apart. 

I spoke to a breast care nurse, because I didn't just want to stop. Thankfully, she gave me a two-month holiday. The aches and pains disappeared rapidly, so we agreed Letrozole was the problem. 

She switched me to Exemestane. I've been on it for 5 months now. So far, so good - although it might be making me feel a bit tired. Don't know, because that could be caused by my atrial fibrillation and atrial flutter. 

I think Exemestane is twice as expensive as Letrozole, so they tend to start us on that. But my breast care nurse was very sympathetic when I told her my problems with it. She said I mustn't suffer in silence: we must find a solution. 

I hope we have, and I hope you do, too. 

I also have brain fog. Luckily, I'm retired, so it doesn't matter very much. But it is frustrating. I haven't found a solution, so I try to "go with the flow" and not beat myself up about it. I've also warned my friends and family, so they know what to expect. 

Wishing you all the best xxx 

Thanks lovely knowing others feel the same helps so your solidarity is appreciated xx

Thanks so much for your kind words, it’s so rubbish isn’t it we have to take them but boy it’s not pleasant! Im just back from the gym so hope that will help, the hot flushes at work today were manageable and I’m so grateful we have this to prevent reoccurrence xx

Hi there, this isn’t very helpful, but I feel exactly the same. I’m not doing the exercise I was doing as I’m not signed off by the physio yet following surgery but have been in the lettozole for 6 months now. Put on it pre ops while working out what was wrong with me. Starting chemo in 2 weeks, and stopping thelettozole  will be great! 
the BC nurses did suggest anotriptoline to help with the insomnia and it has helped a little. Sorry to not help further but I feel your pain! 

It’s so rubbish isn’t it - I look like Im

pregnant my tummy is so bloated. Good luck with the chemo lovely xx

Hi there, what a nightmare, sorry to hear you're having such troubles. It's the way of it, treatment fixes one problem and starts another.   I wondered if you have tried any different brands of letrozole?  I've read on here from many people that the “fillers” used in different brands can have a significant difference to side effects (seems weird to me I must admit) so maybe switch brands and try that. The original is Femara, though also the most expensive.  Best wishes 

Thanks lovely maybe I’ll ask for those next time!

Letrozole can be really tough on the body, and your frustration is totally valid. I know it can feel like your body has completely changed, and it’s hard when it feels like no matter what you do, the side effects are still taking a toll. But in any case, it is necessary to use only high-quality Letrozole for the best effect and minimize side effects.

It’s great that you’re staying active with walking, swimming, and hitting the gym—that's already a huge step in the right direction! Strength training might help a bit with the muscle tone and metabolism, but I totally get that the exhaustion from poor sleep makes it so much harder to keep going. Have you spoken with your doctor about possibly addressing the sleep issues or anxiety separately? Sometimes just getting better rest can make a huge difference in how we feel overall.

Collagen supplements could help with skin and maybe even hair thinning, and they're generally safe, but I would definitely check with your oncologist first, just to be sure it's okay for you. It’s also worth asking about support groups or nutritionists who specialize in cancer recovery—they might offer more personalized advice. Don’t be too hard on yourself, you're doing so much already, and it's okay to lean on others for support during this time.