Would it be too much to ask for a "roundup" of the research that you did? I am trying to find some basic statistics i.e. post menopausal women who took Letrozole for five years following breast cancer reduced their remission rate by ???? versus the same number of menopausal women who did not take Letrozole.
Another problem that comes up reading masses of medical tests, is just that their goal, of course, is focused on the medication and the side effects are given second fiddle (bone loss, arthritic pain, etc...)
nk you in advance. Been on Letrozole for four months. Osteo Tscore is -3DS. Dizziness, nasty diarrhea
I would love to go into appointment with Onc with some ammunition.
Thank you in advance.
Hi, I'm on Teva brand of Letrozole and think I am managing well with it. I'm also on Palbociclib for secondaries, and the two together can make me feel a little nauseous. My GP has no problem prescribing Metaclopramide for this. It's the drug I was given with my chemo. I always carry some with me, but tend to take one first thing in the morning at the beginning of my Palbociclib cycle . The Cipla brand doesn't agree with me at all, and I feel quite fuzzy first thing, with some joint pains. Hope this helps. X
Hope the change of brand suits you better Lupin. Took me 4 chemists before I found one that would supply Cipla so hoping it continues to suit me! Xx
Hi, thanks for replying. I'm on Accord. So that is obviously part of the problem . I'm getting a different one when this pack is. Finished so il let you know. I've also discovered that the blood pressure pill lisinopril has it as a side effect too. So know doubt the combination . Doesn't help. I can be fine for a day or two with the loperamide and then I need two . It can be difficult for going out . Yes I get the cramping. I thought about taking something for that but worry that I would just not know when to go.
Anyway keep smiling I should have my second year mamogram soon so I'll keep in touch .
Hi Lupin, interested to read your post about the diarrhoea 🙈 I started on the Cipla brand and took for 15 days with no issues, changed to Accord and have had regular bouts of 💩 along with cramping. Started Accord 18 days ago, and it started after the 6th tablet. I do have IBS and did suffer with the Docetaxol but things were definitely improving before I started the Letrozole after surgery.
Has anyone else had this problem 🙊 What brand are you on Lupin?
Spoke to my BCN today and we’ve decided to go back to the Cipla brand (I’ve got 13 left) and see if that makes a difference. I really hope it does and would also prove the difference a brand makes. Will let you know.
These are some of the side effects I read about if this helps.
dizziness, drowsiness, weakness, tired feeling;
hot flashes, warmth in your face or chest;
flushing (warmth, redness, or tingly feeling);
bone pain, muscle or joint pain;
numbness, tingling, weakness, or stiffness in your hand or fingers;
Hi - I have been on Letrozole for six months. Never had a spinning sensation but do feel quite foggy especially when I wake up. I'm also more tired than usual. I hope your symptoms pass and things improve.
Hi, I've switched from Tamoxifen to Letrazole and am coming towards the end of my first packet, but have noticed that I feel dizzy in the last couple of days, it's a bit like sea sickness, and last night I felt like the room was spinning when I went to bed. Is this normal, will it pass? I was really lucky and didn't suffer any symptoms with tamoxifen, other than the standard hot flushes. Thanks x
Iam72 . I have the sweats and painful joints .been on letrozole for two years this year. I also have diahreaj. It's so annoying .i take Imodium most days. Doctor knows . I am now going to check the kind of pills and see if makes make a difference. Being older I don't have to worry about going to work as I feel that must be very difficult for people. I took thrombosis after the operation and of course that took months to sort..
I now have osteoarthritis in my right leg and am doing exercises to try and straighten it . Same one as thrombosis.
Everything does get to me at times and my poor suffering husband.
Anyway let's hope things improve with time. Lupin
Hi. I am 73 in May and been on letrozole just coming on two years. I have the night sweats aching bones but have osteo arthritis in a knee so getting Physio . To help it I have the problem of diahreaj about two hours when I eat after the pill so now have Imodium from doctor plus cocodamol which helps. I think about my age it's hard because you get slight nervous problems and this little pill can emphasise them . I also took deep vein thrombosis after the operation and that took ten months to sort out . Yes I get weepy but it's frustration as I still want to do more . I'm pleased to hear your complaints as I don't feel so alone. My poor husband copes brilliantly., bless him . I shall now look at the make of the pills and see if the pill matters.
Keep smiling .lupin..
not too good news. Got taken off the Exemestane about a week and a half before Christmas. Developed same effects as letrozole. Felt like I was going mad and had many tears. Had lovely rest off tablets for a couple of weeks over Christmas. Went back on letrozole, terrible, then changed back to Exemestane. OK for a week and a half then back came all the side effects. Off everything now for six weeks then have to decide whether to either risk not taking anything or combining one of the tablets with anti depressives which have their own side effects. Feel quality of live is as important as quantity. Even on the tablets there is no guarantee the cancer will not return. Hope you’re having a better time on them than me. I wish you well and will let you know how I get on after Easter. Would love to hear from you again. Xxxx
My problems with Anasrozole were confusion, tired, exhaustion, feeling like I got hit by a brick wall. After two weeks, I had to stop. It was affecting my whole life. They wanted me to try again but I declined profusely! I’m on Letrozole now for ten days now. I keep falling asleep, hot flashes are worse than ever. Feels like pins and needles running through my body. I’m recovering from rotator cuff surgery. They had me wait until Vicodin was out of my system. Only took them fora few days. Anyone else have these problems? I nod off all day long. I go out and I’m so tired. I get out and walk around for exercise. If this tiredness doesn’t go away soon, I don’t want to keep taking this. I had a 6mm small lump, 2 lymph nodes, chemo 4x, 30 proton therapy treatments.
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
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
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.
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
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??
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.
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!
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
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.
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.
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
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 - then give it a go and see how you get on. Everyone is different. All the best. xxx
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
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
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
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
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.
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.
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