Letrozole help

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Like so many of use before BC I was happily taking HRT and felt bloody marvellous!

Fast forward two years and I am taking letrozole, my cancer was large mulit-focal and whilst only a stage 2 after the mammoplasty they said if they'd have know how widespread it was they would have recommended a bilateral mastectomy. So the fear of them not getting it all, the radiotherapy missing a bit and a reoccurrence is huge and terrifying for me - as i am sure you will understand.

But I bloody hate what letrozole is doing to my body - I am a stone heavier, my muscle tone has gone, my legs covered in cellulite, my hair thinning, my skin dry, my bones ache, I can't sleep, I am anxious (but not taking it makes me even more worried!)I am bloated - my tummy swollen so I can't fit into my clothes and I look awful, I have an apron of fat. It really is horrid. I eat well and exercise, I walk 12-15,000 steps every day and swim but I have joined a gym, am getting a programme designed for me to help tone and shift the fat. I'm looking at diets but I'm tired because of the sleep disruption so every time I try I am like..god I need something sweet to keep me awake at work :-) 

This is a huge rant I know, but does anyone have any tips as to what else I can do to get my mo-jo and my body back - honestly I feel about 70. I can take collagen things can't I, I wish there was somewhere you could go to and them say well this is fine to take and helps...I miss my hormones so bady!! I know I'm so lucky in so many ways but I can't stand to look at myself.

Ohh yeah and bloody brain fog forgetfulness too...anyway enough grumbling :-) Any tips out there guys??? 

  • 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 

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

  • I understand how challenging it can be to deal with the side effects of medication. I also took letrozole, and I can say that using high-quality medication is crucial for achieving the best results. High-quality Letrozole can be purchased hereRegarding the side effects such as weight gain, skin and hair issues, sleep disturbances, and others, you might consider the following:

    Consult Your Doctor: Discuss your symptoms with your doctor, who might suggest additional methods to manage the side effects or consider alternative medications.

    Stress and Anxiety Management: Practices like meditation, yoga, or breathing exercises can help reduce stress and improve sleep quality.

    Diet and Supplements: Consulting with a dietitian to create a personalized nutrition plan might be beneficial. Collagen and other supplements can be helpful, but it's best to discuss these with your doctor.

    Physical Activity: Continue with your physical activities, but you might want to consult a trainer to design a workout plan tailored to your needs.

    Support and Feedback: Connecting with others who are going through similar experiences can provide emotional support and practical advice.

    You're not alone in this, and there are ways to improve your situation!