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Letrozole Side Effects

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Re: Letrozole Side Effects

Hi Lesley,

thanks for your reply and I'm about to start the drug and I've asked for Accord brand, so I'm going to give it a go and see how I go. I do walk alot with my dog each day and have lost 2stone since 2016 and become fitter generally, so I'm hopeful that it won't feel too bad after a few months. 

The predict calculator is useful and shows pros and cons of taking it in percentages...difficult to judge as we are all so individual.

I wish you all who added their thoughts good health

Lin

 

 

 

 

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Re: Letrozole Side Effects

Hi ladies I am on my fourth year of letrozole I must admit I struggled at first on the cipla brand but then changed to accord brand which I've been fine with yes I am stiff some days but could be my age we all get joint pain of some description even without these tablets my doctor stipulated accord brand on my prescription and I must admit my local pharmacy have been brilliant one thing I must say ladies is have your cholesterol checked whilst you are taking it I have mine done every year it can have a tendency to raise it mine jumped up a bit so I started taking benecol and it dropped currently 4.8 which is fine it does say on the leaflet enclosed about cholesterol my doctor said no problem we will do every year hope this helps lots of love Judi xxx

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Re: Letrozole Side Effects

Thanks for the encouragement. 

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Re: Letrozole Side Effects

Hi,

It may be the case that people with bad SE from Letrozole might post more, giving the impression that most people might expect to feel awful on Letrozole. I’m 56 and been taking Letrozole for just over a year. At first I had several hot flushes a day and felt like an elderly person, very stiff and aches with painful knees. I was prescribed Naproxen for a while to take at night to help with knee pain and stiffness when I first woke up.

But after 3 months things slowly improved. I still feel stiff when I first wake up and after I’ve been sitting down for a while. But I no longer have any pain. I do have to deal with symptoms of vaginal dryness due to the lack of oestrogen - that is my worst symptom. But through trial and error and trying different vaginal moisturisers etc things are much better. Apart from that I feel fine. I don’t have hot flushes or night sweats and don’t have trouble sleeping. I haven’t so far experienced Hair thinning or insomnia. I’m a little less bendy so would probably find yoga a bit tricky but I walk my boisterous dog for an hour every day in the park. I walk quickly and always feel more energised when I get back. I too put on weight during chemo, due to a combination of steroids and eating to feel better I put on 2 stone. But in the 2 years since active treatment ended I’ve lost 1.5 stone by joining Weight Watchers with a friend (much better doing it with a friend). It’s been a slow weight loss with ups and downs, and I’ve got a way to go as I was overweight before the chemo! It is difficult but I just wanted to say that if you are reading this and you’ve been prescribed Letrozole, it may not be as bad as you think, you may only have a few of the side effects associated with Letrozole and they may only be mild. And that for some people it is possible to lose weight while on Letrozole with the right support. I realise I’m really lucky that my side effects eased up and that I feel really good most of the time.

Baz x

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Re: Letrozole Side Effects

Hi Dusty

 

i am a couple of years older than you and have been on Letrozole since August last. I do have the odd pain in the back of one leg but no other noticeable side effects. I have been told things get better after a few months when you get more used to the drug. If it stops a recurrence of the cancer I will erseverel I hope you make the right decisions and feel better slowly. All the best. Lesley 

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Re: Letrozole Side Effects

Hi there,

Like you, I had lwe, sn biopsy (clear) and saw Oncologt Dr last week who advised me to take Letrozole...like you, I'm wondering if it's worth it?! I'm 59yrs old and don't want to take a drug that may make me feel o ill?

Have any one got thoughts on this??

 

Lin 

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Re: Letrozole Side Effects

Hi Alibobs

I had same as you. Have been on letrozole since last November. Have had lots of night sweats but they are getting less. Just lately my legs seem tired now and again, but I am 72. I see oncologist on 22feb ,am expecting 15 sessions of radiotherapy. I personally don't think these effects that bad.

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Re: Letrozole Side Effects

Hi ladies
I myself have been on letrozole since end of July I also have the aches and pains on a morning in my legs but I'm also suffering from neuropathic lymphadema in both my affected arm and breast which is very painful I also would love to lose some weight as put nearly two stone on while recovering from surgery and chemo and finding it hard to lose also restricted to what exercise can do would appreciate any advice from anyone
Thanks luv gail xxxx
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Re: Letrozole Side Effects

Hello everyone!

I have some doubts about Letrozole and gain weight, i hope you can help me! I gained a stone after indulging myself during first 3 months of chemo (red one) with full sedentary life and good food! and on the second part a milder chemo allowed me to start loosing weight with diet and regular exercise. I worked really hard because i had read that it would be harder to loose weight once i started on Letrozole, once my chemo and radio was done. So i lost the stone, and actually i am doing medium effort exercise everyday, at least an hour ( i swim, i go to the gym or hike, on alternante days) i am trying to follow a healthy, not too restrictive diet,  and i  havent gained weight again in 3 months. I am really worried about weight beacuse my oncholosgist has emphasized greatly on avoiding gaining weight as part of treatment. I just started on letrozole, two days ago, and i want to know if i will keep my weight if i continue with my healthy diet and exercise, or if i need to diet and exercise more. Good vibes to you all fighters! 

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Re: Letrozole Side Effects

Whatever works has to be worth a shot! 

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Re: Letrozole Side Effects

Ooooo might give that a go!!
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Re: Letrozole Side Effects

Happiboobs

You are not mad. .there is a lot of media hype about this on the feet ..it's more successful in children but definitely better than swigging cough medicine ..
I don't think there is much difference between vapour rub and deep heat / tiger balm so hence the less aches ..but if it works. .keep doing it !!
I don't mind the smell so can live with the aroma in my bedroom. Xx
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Re: Letrozole Side Effects

Wow! Got to be worth a shot as an experiment! No matter how "daft" some things sound (who would have thought mould in a petri dish would have resulted in life-saving peniccillin for example.) I'd be up for trying it if nothing to lose. Wonder if it is the warmth generated by the (rhyhms with tricks) vapour rub, a bit like the heat rub for bad backs? You could be on to something! xx

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Re: Letrozole Side Effects

Hi all.

just wanted to report something that seems a bit daft but hey ho here goes. I have had a bad cold, probably chest infection for the last two weeks. I didn’t go to the gp ‘cos hoped it would go without antibiotics although probably needed them . I am on the mend now but heard three or four days ago about a famous decongestant vapour rub.....if you put it on the soles of your feet at bedtime , then socks to protect your bedding it helps stop a cough. Well I realise that you shouldn’t stop a productive cough but I need my sleep! Well it was amazing and worked , I have slept all night since. Right here is the strange bit.... I have just realised that my joint stiffness in the mornings from the Letrozole has hugely eased. So what do I do now? Do I continue to use it. So I thought I’d put it out to you ladies to see what you think. Please accept that I am not totally daft but it does seem a bit strange on both counts with stopping the cough and the joint pain/ stiffness. 

All the best to everybody.

xx

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Re: Letrozole Side Effects

Yes - it is confusing and having to make decisions without really understanding the ins and outs makes it all so difficult. I do hope, Surreyhillsgirl, that I haven't sown doubt in anyone's mind - that was certainly not my intention. I was simply suggesting that Ali should give herself time, get informed as much as possible and look after herself while she discusses her pathology with her oncologist and makes up her mind.

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Re: Letrozole Side Effects

 

Hello  girls

 

I’m finding this all so confusing and it seems each consultant is giving different advice. It’s hard to know which is the right way forward.

 

My consultant said emphatically she’d  have no qualms in me stopping Letrazole, as my tumour, found after my mastectomy was so small and no nodes were affected, thus she put me down as very low risk. Obviously with annual mammograms. I have to say I feel almost normal again, apart from my headaches which continue to blight me!

 

I suppose we all go by what we are told. However initially I was told to do Letrazole for five years after my surgery!...?

love to you all xxx

 

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Re: Letrozole Side Effects

Hi Alibobs

I understand your concern re hormone therapy (and I felt the same before starting the hormone therapy too, as I'd read too much on here) but I can only endorse what Ann has said - it is mainly people who  are having problems that post on here, with fewer posts from people like us who are not having any problems. I have been on Anastrozole since February this year and to be honest if anything i am fitter than i was before diagnosis, due to working on losing 2 stone since January and increasing the exercise. Also some modifications to diet - lots of green leafy veg etc -to keep the bones good.

This means that my existing arthritis in hips - I'm 65 - is no more painful than it was when i was heavier and not on the tablet. Haven't had night sweats or hot flushes either, probably due to being post- menopausal and therefore not likely to have been much oestrogen in me anyway. The first brand i was prescribed - Accord - has suited me very well so I have got the pharmacist to ensure I get that brand each time, but other people swear by different brands, so it is a bit experimental to begin with. As you are already fit and active - probably more active than I was to begin with -Smiley Happy then give it a go and see how you get on. Everyone is different. All the best. xxx

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Re: Letrozole Side Effects

Hi thank you all for your help. Yes surreyhillsgirl my cancer was very small. Early stage but ER+ which is why I'm being prescribed letrozole. It's preventative measure as my margins were clear and there is no node involvement. I am also going to have 15 radiotherapy sessions. I do hope I don't have bad side effects, guess I will just have to test the waters. I hope you are all well. 💞
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Re: Letrozole Side Effects

Hi dancingpip, I just feel I have to reply to your querying why someone has been prescribed Letrozole which is going to sow seeds of doubt as to whether her Doctors know what they are doing. They know her diagnosis, you don’t. Her tumour may have tested ER & PR positive for which she needs an aromatase inhibitor to reduce the chances of it returning. I’m all for researching and reading up - I persuaded my Oncologist to give me a weeks breast boost added on to my radiotherapy although I’m over the age limit. I just think we have to encourage people to work with and trust the experts.
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Re: Letrozole Side Effects

Hi Ali - Yes, definitely eat heathily and remember that if you are prescribed Adcal you will need to up your magnesium intake. Magnesium is required for calcium absorption. Without enough magnesium,calcium can collect in the soft tissues and cause a type of arthritis. Oh it's all so complicated!  Meanwhile -  keep exercising.   Hugs, Pip

 

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Re: Letrozole Side Effects

Hi Alibobs, 

Everyone’s response to Letrozole is individual and you probably read more of the negative side effects here so people can support one another. I’ve been on Letrozole for three and a half months and only started feeling side effects after about 6 weeks. On the advice of my breast care nurse I have been having a free course of acupuncture at my hospital’s Macmillan centre and after the first one I felt an immediate improvement in reducing night sweats and hot flushes. My breast care nurse said side effects seem to peek at about 3 months and then tail off. My surgeon said reflexology has worked for some of her patients. As a nurse of 40 years myself it’s good to see other health professionals recognising the role complementary therapies have to play alongside conventional treatments. I’ve increased the amount of exercise I do and eat healthily, but it’s important to eat some dairy products to get enough calcium in your diet as Letrozole can cause bone thinning. I choose the lower fat versions. Hope this helps x

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Re: Letrozole Side Effects

Hi Ali  - Pleased to hear your surgery and lymph nodes were good. So, if you are all clear, then why are you being prescribed Letrozole? Belt and braces job? Have you run your pathology through the predict tool? http://www.predict.nhs.uk/predict_v2.0.html Have you been given any advice about lifestyle / dietary changes or exercise? Take some time to make a decision; you are at a 'battered' stage and may need to have some space before moving to the next step. Read everything you can in books and on-line so that you can make an informed choice about whether you want, need or should take Letrozole. Then talk it all through with your oncologist.  Also they, or your doctor, will always help to find a brand that suits you.    All the best Pip

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Re: Letrozole Side Effects

Hi Ali,
There are many of us who are fine on hormone therapy, or al least find any side effects manageable, so this would not tend to be reported here, as understandably, those with issues will post.
I’m on tamoxifen & I remember feeling apprehensive before starting it, especially after reading experiences here, as it turns out, it’s been ok.
See how you go, if you have side effect issues, then deal with it then.
Wishing you well with it.
ann x
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Re: Letrozole Side Effects

So I have got through surgery WLE and lymph nodes x 2 removed. All clear!! My surgeon is sending script to gp for letrozole as I am post menopausal. Reading the thread here I am starting to get worried! Is there anyone out there who is actually ok on letrozole? I am fit and very active and now scared that my quality of life is going to be affected
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Re: Letrozole Side Effects

Hi Nannyannie Im just pulllinground after coming off the Letrozole. took me longer than six wks to start feeling better. Just started feeling much better the last couple of days Ipick up my prescription for Extemestane on saturday and start taking it then . they have said it will take about 6wks for me to get it into my system so wont know till then how it will effect me I guess. Pleas keep in touch and let me know howyour getting on. Glad you have been ok so far xxx

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Re: Letrozole Side Effects

Hi - thanks for the advice and encouragement. Sorry it took so long to reply - still finding my way round the site! I do feel a bit better and not so sluggish in the mornings - still overall tired and do have aches and pains. I will certainly check out brands and do some more research. It's such a help to know others hav3 gone through it all too. All the best. 

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Re: Letrozole Side Effects

Thanks for that - it's such a help to read how other ladies are coping. I don't feel quite so bad in the mornings now but still very tired and go to bed quite early. One thing I find weird is a severe pain at the back of one leg just above the heel. Don't know if that is a SE though. Thanks for all the advice - all the best to you. 


@Happyboobs2 wrote:

Hi, I am also the same age ish as you . I have taken Letrozole for over 2 years now. For the first couple of months I had heavy night sweats, absolutely drenching and also woke up very sluggish and with a headache.

I put a lot of that down to being dehydrated because of the sweats. After a couple of cups of tea and breakfast the headache went quite quickly.

These days I am still slow to get going in the mornings, it doesn’t matter much as I am retired but I feel for those ladies who work or have families to see to.

The joint pains in the early days were quite bad, throbbing ankles I remember.

I still have joint stiffness which obviously hurts but once I get going it helps although several times a week I resort to paracetamol or ibroprufen.

I don’t feel I could stop the Letrozole  as I want to give it my best shot but we are all different aren’t we?

Please read the threads about the different manufacturers of Letrozole. I believe a lot of ladies struggle with Cipla , that’s what I started with, I changed to Actavis and now am sticking with Accord.

Its a big learning curve!

All the best

xx

 


 

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Re: Letrozole Side Effects

Thanks for that - it's such a help to read how other ladies are coping. I don't feel quite so bad in the mornings now but still very tired and go to bed quite early. One thing I find weird is a severe pain at the back of one leg just above the heel. Don't know if that is a SE though. Thanks for all the advice - all the best to you. 

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Re: Letrozole Side Effects

Hi Octavia,

Well done for coping so well. Yes the forum can be a great support just knowing there are other people out there going through the same thing, and picking up tips and ideas. I was diagnosed with breast cancer earlier this year so had surgery,chemo and radiotherapy, now on Letrozole for 10 years. I find exercise really helpful so I've taken up aquaerobics again which I do once a week. Also Pilates once a week and gentle yoga at my Macmillan centre. The night sweats and hot flushes have drastically decreased since starting a course of acupuncture a month ago. In fact the night sweats stopped after the first session so that was brilliant. I am taking the Accord brand as that was what was first dispensed to me and having read that ladies have less problems with that brand I've asked for that one specifically when I need repeats. I definately agree with you that keeping active helps and I try to go for a walk most days. I'm 62 and if I need to have a sleep in the afternoon I do, I just listen to my body. All the very best to you. x

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Re: Letrozole Side Effects

Hi. I  had breast cancer two years ago and am on letrozole for ten years. I am seventy two and have the double problem of doctor saying , your arthritis , tiredness  diahreaj  flushes  sweats. it's Your Age . Now I know that some will be and the body being older has difficulties . But you do get fed up with it. 

  Yes I cope with everything and am very happy and healthy . I do have a leg problem as I took deep vein thrombosis afternthenoperation and needed treatment for ten months . I do have knee problems. But I try not to let it bother me. 

    I must say finding your page has been a great help and I really feel fortunate to be so well .I can cope with the side effects . And all I can say to all of you who write is thankyou for writing . I know you also will cope and please go and enjoy. Your life .

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Re: Letrozole Side Effects

hi Nannieannie hope your continuing to feel ok now your off the letrozole x

 

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Hi Pip, I was a nurse for over 30 years, I agree with all you say! Doctors get a few hours on nutrition during their training which is dreadful really. I’ve read Jane Plants books, a lot of what she said didn’t sit right with me but as with most of these things you have to pick what suits you, whereas Chris Woollams books make sense to me, probably why I enjoyed hearing him speak. When I was given my initial diagnosis by the breast surgeon, I asked what I could do to help myself, reply didn’t offer anything really but I have never had any chocolate, biscuits, sweets, etc since that day. I do have the occasional slice of cake from an organic shop that only uses natural ingredients as a treat. About a month later I gave up all cow dairy but do have goat milk in my daily cuppa and Kefir, and although I eat some fish (but like you no meat), mainly follow an organic plant based diet. I tend to avoid soya products though but have phytoestrogens. I definitely do more exercise and was always a night owl, but now actually like going to bed early...how my life has changed! But, I feel so much better for it!! I can honestly say if I was told they had made an error and I hadn’t got cancer after all, I wouldn’t go back to how I ate before and my diet was okay then. My scans have since been good but have one coming up so will see. Take care, Kxx

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Re: Letrozole Side Effects

Thank you pip for that😊
I'll have a look....some ladies on here have advised against soya products, but the rest looks good.
Sue xx
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Hi Kate21    - Yes, I have read some of Chris Woollams articles and saw that, like Jane Plant, he advocates dietary changes and exercise alongside the medical treatments.  Personally I felt empowered as soon as I started thinking seriously about living a healthier lifestyle.  I must say that I found our over-worked and under-paid NHS to be absolutely fantastic every step of the way, through surgery, rads and medication.  I can't rate them highly enough but I do wish that someone/anyone on my cancer journey had put more emphasis on diet from the beginning so that I could have felt I was being more useful!   Hope all is going well with you. Best wishes Pip   

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Hi Sue C.            Not sure how much advertising I can do on here but there is a certain supermarket chain beginning with T (every little helps) who seem to be taking over the world and they have an extensive 'free from' range.  My local one does an excellent coconut oil mature cheddar, a blue cheese, jalapeno & chilli cheese, a smoked variety and a coconut oil/soy soft cream cheese in addition to other cheeses I have not yet tried.  They also have excellent home brand 'free from' creme caramel, chocolate puddings and soya yoghurts in different flavours.  My T. shop stocks Alpro 'plant power' soya, almond and hazelnut drinks, yogurts, creams and other dessert alternatives.  Coconut milk seems to be readily available most everywhere now too.  When I first stopped eating dairy produce I lost weight, although I did not particularly need to.  However, 6 months on my weight has levelled off and I feel great.  I would not wish to make my diet a burden for anyone and, at a meal at someone's house, would not refuse to eat a dairy item but I certainly feel better for cutting it out at home.  Presumably cow's milk is naturally full of hormones to give a baby calf the best start in life - but I just feel better without them.  Interestingly, I have never been able to breathe really clearly all my life and since going dairy free I have had a noticeable improvement so, all in all, it has been a good decision for me.  Hope you find some dairy alternatives that you enjoy and I wish you all the best. Pip

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Re: Letrozole Side Effects

Hi Nannyannie beento hospital today . had discussion regarding medication.They are not convinced that how Im feeling is related to having took the Letrozole but seem to be open to me trying either Tomoxifen or Exemestane. As Tomoxifen isusually only given to pre menepausal women I think I will ask to try the    Exemestane andsee how they effect me. They said to ring them and let them know wha I decide.Please keep in touch and let me know how your getting on with them. They said they will take about 6 wks t get into my system.. takecare xx

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Hi Lindyloula, sorry you're feeling so awful on Letrozole . I've been on three months now and I've finally got it sorted. I felt sickly and sweaty. After reading through posts here I've changed my brand to Teva, and I take it on an evening so i sleep through the symptoms. I do more exercise to keep my joints supple, and go to Maggies for TaiChi . Don't give up just yet. It's a good drug for us. X

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Thanks Happyboobs 2. I’m exercising more too and eating healthily. Take care. xx

Hi Anne all the best to you too. xx

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Hi Pip, great to read your post as that is more or less exactly what I’m doing, although my history isn’t the same but I am on Letrozole which luckily I find easy to take but appreciate how awful it can be! I have just got home from a presentation by Chris Woollams, if you’re familiar with him? Just wanted to say it was very useful, interesting and reassured me about what I’m doing! I find him one of the best for research based holistic advice and like that he doesn’t encourage people to just do alternative therapies. So glad you’re feeling so well, Kxx

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Hi been on letrazole for 8 weeks after having chemo and a masectomy , feeling very sickly and low in mood , im speaking to my breast clinic tomorrow , hopefully to come off it !
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Re: Letrozole Side Effects

Hi pip

Can I ask you what have you replaced the dairy with?

Am on letrozole, and have switched to organic meat, and feel that my diet is pretty healthy. But like yogurts and cheese, so what is a good alternative?

Sue xx

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Re: Letrozole Side Effects

Hi angabb54 - so pleased to hear you are feeling better.  Your consultant sounds reassuringly well-read.  I, also, have also moved to only organic foods and have cut out ALL dairy produce at home.  I don't like to cause difficulties if I am invited out to someone's house so I just go with whatever I am given on those occasions (except meat) Glad to say that I now feel well, am able to exercise without aches and pains and am looking forward to going into my dotage 'drug-free'.  I am convinced that too many years of HRT started my breast cancer off and I wonder now if the HRT also contributed to my over-active thyroid readings - but will probably never know the answer to that.   I am so relieved that my consultant supported my decision to stop taking the Letrozole;  it was certainly worth the hours and hours of internet research that I did before I saw him to request it. I still resent suffering nearly 4 years of side effects but, as someone else has already written on this forum,  I do understand why the consultants are fearful of doing less than a belt and braces job. Hope all continues to go well for you and, to all those who at the moment have to keep taking the tablets - try to do some exercise, eat heathily and be kind to yourselves.   Love Pip

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Same with me. I’m on Letrozole for 10 years and have been advised NOT to come off it. But I shan’t let it beat me!

 

Anne

xx

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Hey! That’s brilliant. I agree with you stopping isn’t an option for me as well . All the best.xx

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Hi All

I started my first acupuncture on Wednesday at my hospital’s Macmillan centre and so far haven’t had a night sweat since and my hot flushes the last two days have definitely been fewer. So onwards and upwards.

I have to take Letrozole for 10 years as my Breast cancer was high risk, so stopping it isn’t an option. xx

 

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Hi All

I started my first acupuncture on Wednesday at my hospital’s Macmillan centre and so far haven’t had a night sweat since and my hot flushes the last two days have definitely been fewer. 🙂So onwards and upwards.

I have to take Letrozole for 10 years as my Breast cancer was high risk, so stopping it isn’t an option. xx

 

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Re: Letrozole Side Effects

Hi Girls,

Back to the forum this week after nearly 7 weeks without Letrazole...

Has anyone suffered migraines and eye flickers after stopping this drug? I seem to have felt so much better since coming off them as previously mentioned. Can’t imagine it would be withdrawal after so much time...as my risks were small and the side effects so severe it was recommended I stop the therapy as it made little difference beacause low risks. It’s scary too.. trusting one person with their opinion but as a breast consultant she certainly was confident and forthright and had no issue with me stopping. Just to remain vigilant. 

 

xxx

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Re: Letrozole Side Effects

Hi anggabb54

I hope my consultant lets me stay off the Letrozole too as really does effect my quality of life.. but saying that would hate to get the cancer back sometimes its hard toknow what to do for the best  xx

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Re: Letrozole Side Effects

Thanks Nannyannie.I really dont want to go back on Letrozole and will have a discussio soon about the way forward for me. It may be if the risks are very small they may agree I dont need to take it. Ithink it has a lot to aswer for  as really effected my memory in a negative way ,caused me confusion which made me lose confidence and increase my . I have oesteopina in my spine and really worry that the Letrozole will make this worse and recently had a bit of chest pain  so worry that it may effect my heart as I have very mild thickening of the heart muscle. sometimes I think i should just do without the medication and hope for the best .. just adjust my diet lose weight and get plenty exercise and it might be a better way forward.

Thanks again for your reply xx

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Hi all, I can't remember what brand I was when I started on Letrozole last month but as previously mentioned on here, the side effects weren't pleasant at all!  I picked up a new prescription on Thursday, these are a different brand, Sardoz.  I know it is still early days but so far the hot/cold flushes are still definately there, day and night.  I am extremely tired and feel my eyes are getting worse again.  (I suffered badly with dry eyes and constant pain in them for about 3 weeks with previous brand and was just getting over it!)  I really hope I don't get a repeat of last month!  The light headedness and dizzy spells are hard to live with too.

 

I try to remind myself daily that I'm taking them for my own benefit and that they could save my life, but it is already getting hard to convince myself of this.  Please tell me it gets better.