Hi there thanks for your reply..I note you were told to stop taking Letrazole. Was this because you're risks were so small? I'm waiting to see a consultant as I mentioned earlier..but been told by a breast nurse doing a fitting for me that 'The panel' had said to stop taking it!...just like that with no further ado. Anyway I shall wait and see the experts and discuss my risks. Hopefully it will not take too long to get the appointment through.
how do you feel now you are off the Letrazole!?
Hi thanks for your reply..I have now been to the breast nurse..mainly to pick up a new prosthesis as mine was leaking silicone. Whilst measuring me up she said that there had been a multidesignatory meeting of doctors nurses and consultants about my case..i.e. Side effects on Letrazole and they'd decided as my risks were low and the tumour they found was so tiny.... I could stop taking it!?
I was surprised to say the least and said I'd like to SEE and speak with a consultant..I was then told they'd say the same thing as she had just told me! anyway I insisted that they make an appointment with a consultant..as I've so many questions to ask. Really very surprising. Just goes to show that you really do need to be firm on these things..it's my body, I've had a mastectomy and did I need to be on this awful drug at all? I await my appointment and will see what they advise, but will probably be told it's my choice in the end etc....
its been two weeks now since I took my Letrazole and although not feeling tip top I am not suffering as much as I did.
Watch this space! Xx
Thank you so much for your reply.
I get, here in Spain, thankfully. the original, so I am on Femara - no generic. And still the nausea. The onc. now gave me Aromasil which I will be taking just before going to bed. Maybe this will help. Have the feeling that he thinks it is psychosomatic - which is possible. Just have to put up with it. All the test were normal and he was, on the whole, very happy with me. One thing I do not want for IT to come bac k.
Any other advice from you out there would be much appreciated!
i have been on Letrozole since January and thankfully not too many side effects. Have you thought about trying a different brand of Letrozole.? I did have one brand Cipla which made me dizzy so went back to the doctor and got another prescription for a different make and it was fine . I was only on Cipla for just over the week. I decided life was too short and we have all been through so much so went to the doctors sooner rather than later. Just a thought, it might help. Hope things improve for you.
Help - has anyone taking Femara/Letrozole got constant nausea? I have been on it for appr. one and half years, very little bone ache BUT the nausea is not getting better as time goes by but worse.
My oncologist, sadly, does not really want to know: all medications have side effects when asked to give me something. My quality of life is zero because the sight of food makes me sick.
Have tried ginger tea and travel bands, with no effect.
I would be most grateful. Or am I the only one???
Love to all
Hi angabb54 just seen your post. I have been on Letrozole since January, either Dr Reddys or Accord apart from a very brief spell on Cipla. I felt dizzy all the time, went to my doctor who's lovely and told her I couldn't cope for the next 5 years on the Cipla brand. She gave me another prescription to get some more and has put a note on my medical record. Despite this I still get give given Cipla sometimes but I always check before I leave the pharmacy and if Cipla point out that my notes say not that brand. So far pharmacist has been fine and found another brand. We have to take this for a long time so you need to find a brand that agrees with you.
I have been back on Letrozole for about 3 weeks now following a 12 week break due to SE's, have found this time that by mid evening I get very very cold my hands and feet become like ice blocks, it's like the chills when you have a bad infection, can't stop shaking no matter how many clothes or covers I put on, this goes on for a couple of hours, didn't have this before it was usual joint/muscle pain.
Has anyone else has experienced this and should I contact my Oncologist or BCN?
Hi, I agree with you Carolyn...I don't feel too bad with Accord. I tried Cipla and Actavis.
I get my from Boots and tell them I only want Accord. So far they have been very good.
Hi. Carolyn just read your post and don't think I've gone balmy but the last time I went to pick my letrozole up the pharmacist told me accord was no longer available and after this batch it would be actavis brand instead I did have a bit of a panic attack as the accord suits me and I had major joint pain before but that was cipla brand I suppose I won't know until I've tried are you still able to get accord thanks love Judi xxxxxxx
Thank you so much Helena, so good to hear from someone.! Xx
Hello and welcome to the forum where you will get loads of help and support form the wonderful ladies on here.
I can not help with regard to letrozole, but I will say that when my oncologist realised that I had some osteoporosis in my lower spine he changed me from the original letrozole to tamoxifen. I am post menopausal and tamoxifen for usually prescribed for pre manopausal ladies. I am not taking any additional drugs for it at the moment as my GP said it was the low end of normal and there are life style things I can do to prevent it getting worse, exercise etc
You are right and I have read on here how different brands do produce different side effects, I believe it is something to do with the coatings because the main ingredients are supposed to be the same hichever brand.
I really hope that you get some answers and a resolution to your problems with letrozole so that your quality of life can be improved.
Hi girls...this is my first post.
Decided to take the plunge and join in the chat. I had a mastectomy of left breast in Jan 2015 no chemo or radiation. I've been on Letrazole for over 2.5 years to mop up oestrogen as the tiny cancerous bit they found in my breast after removed it..was HER positive. I was was told it was for 5 years... side effects are vile , pain in joints, exhaustion, low libido and mood, extreme fatigue, sleeplessness, itching skin, anxiety, thinning hair, horrible headaches and eye disturbances and stomach pain. I was a fit 60 year old when diagnosed. Since this drug I feel I've aged 30 years. My mum is 87 and is in less pain and distress than I am! However all said and done I felt I was getting on ok and dealing with the SE..( I do have a high pain threshold) This last two weeks have been MUCH worse and after reading some forums I am thinking it could be because I have been given the Cipla brand of Letrazole...last night I felt so poorly thought I might go to hostpital ...in bed now for the day, which has been necessary on and off for the past two weeks. Today I am not taking the tablet and intend seeing GP Monday to get an appointment with a consultant. This really is a powerful toxic drug.and at just 2.5 mg...what is going on? I also have been told I must take a bone density building drug as have a bit of osteoporosis in my back..tried this too and got joint pain big time as a side effect of this one!....Hoping to get some answers in the next few weeks, meanwhile, keep chins up fellow sufferers and will post soon.
Hi Suzi Ann, my homeopathic practitioner recommends dandelion tea and extract for getting rid of water. Haven't been bothered with that, so far. For my hot flushes I'm using sage tea and fresh sage in everything! Salads, soups, lasagne, sauces. You name it and in it goes ! I seem to be managing the Letrozole ok - so far, but just two months in. Perhaps the Glucosamine with Chondroitin and vit C is helping? I also attend TaiChi and yoga at Maggies which I swear is helping joints. 👍🏻 X
I also take 2.5 Mar-Letrozole and stopped drinking wine but my oncologist said I could drink Boost if you are familiar with it and that would be considered a dairy product indirectly. I had a wee little cancer in my left breast near my underarm and had it removed along with 2 of 5 lympth nodes removed and kept my breast as i refused to have it removed not knowing exactly what they would find while I was under. I had only one chemo treatment and thought my life was over because I suffered every side effect listed plus more but I did go for 25 radiation treatments. Two years in remission and was told I would be taking letrozole forever.
I basically have the same symtoms, knees, back, fatigue sometimes, minor hot flashes and puffy feet but that could happen because I have liver problems also. What can I take besides letrozole and vitamin E to deflate my fat feet? I walk and raise my feet but not much of a change. Could I take water pills? I am in remission with breast cancer for now - 2 years but kept my breast.
It does seem to be getting worse. Normally I can manage......just having a bad day I guess.
Saw consultant the other day for a different matter and she said could switch to tomoxifen possibly, but im going to stick with it for now and check up not til December! The reason I was put on it was because I have a large fibroid that they were concerned about. This has turned out to be benign but I am concerned about that if I switch. So really want to stick with letrozole for as long as poss.
Its just getting me down today and feeling abit sorry for myself😢
Been on letrozole for about 10 months now and finding it quite a struggle today. Got used to the joint pain in my knees, hut now its attacking my back and its really uncomfortable. Together with the hot flushes, fatigue and general blur feeling, getting fed up😢
Thanks for listening xx
Sorry to hear you are suffering the dreaded side effects too. I am sure that there must be numerous folk who just sail through and don't have any of the aches, pains, hair-loss, blurry vision or acid reflux ..... but I wasn't one of them! My first oncologist seemed so determined to 'go by the pharmaceutical book' that when I had done 3 years (out of 5) on Letrozole and I asked to stop them because they were making me miserable she said current practice required that I should continue to take them for 10 years now and she would also prescribe me a drug for depression! That was when I seriously started doing my own research and trying to work out why most people (if not everyone) are on the same dose for the same period of time - and yet, realistically, everybody has a different pathology. I came to the conclusion that it must surely be for statistical research.
When I heard about the predict tool http://www.predict.nhs.uk/predict_v2.0.html I was able to put in all my details bar one .....the Ki67 result (to say how aggressive the tumour was) I had not been given that information. When I asked my new oncologist for my Ki67 information he told me that I had not needed that particular test because I was low risk for having a recurrance. I was staggered - why had I not been told this 3and a half years earlier? Why was I on 2.5 mg of Letrozole a day which seems to be the same dose as people with a higher risk? I had already decided that if he advised me against stopping Letrozole then I would request to be prescribed a lower dose. As it was, he agreed that I should stop taking the drug.
My situation and pathology may be very different from yours but I would advise you & everyone to be pro-active in the decision making process and don't just accept drugs upon drugs.
Lifestyle and diet changes are vital too; Oh, how I miss the alcohol and all my favourite dairy products!
I will still see my oncologist annually and can always go back onto Letrozole if necessary but at the moment I am happy to be labelled 'non-compliant' and I just wish I had done my homework sooner.
Wishing you all the best.
Hi ladies I'm also on letorzole and my joints or getting so painful now my hands or getting to the point that I can't tex I'm standing in bath at the end of the day with very cold water in to hell with pain in my feet I think I'm going have to speak to ,y doctor now about changing it but I'm so frightened that the cancer will come back as anyone change to another tablet and is ok I'm getting to the point the I can't sleep thinking that if I change it's going to come back the letrozle must be gold as it's the first tablet they put you on but I really am in so much pain now thanks for reading this 😍😍😍😍😍
I was diagnosed with invasive lobular BC back in April and after two lots of surgery have been prescribed Letrozole and bisphosphonates. I am currently having 15 sessions of radiotherapy. I have been taking the Letrozole for only 4 weeks and already have aching joints and have started to gain weight even though I eat healthy and exercise regularly. I have read about the hair loss and other side effects and I too am considering if the benefits do outweigh the side effects. I am only 49 and have been told that I will need to take Letrozole for10 years. Is the predict website accurate because surely oncologists wouldn't prescribe unless it is needed.
Re: survival rates -
Sorry to hear you are suffering side effects. Nearly 4 years after my original diagnosis I had reached the stage of being prescribed drugs to treat the side effects caused by the letrozole.
I then came across the predict tool - http://www.predict.nhs.uk/predict_v2.0.html - and found that, in my case, taking letrozole, which had caused me debilitating problems would only improve my survival by 1 year. Armed with this information I worked on improving my lifestyle and diet then talked with my oncologist who accepted my suggestion that I stop taking letrozole. Naturally I am fearful but at least I no longer have a range of side effects to deal with.
Wishing you all the very best.
Hi ladies Ihave been on letrozole but I have had to come off of them due tothe bad side effects they have given mea dry itchy cough and have made me lose wait they put meoff of my food they made my voice go funny as well glad tobe off of them has anybody eleshad thease symptoms I would be galto know jeffreyj
I have just finished chemo, EC x 3 and docetaxol x 3, due a double mastectomy at the end of Aug.
I started letrozol just under 2 weeks ago and since I have developed extremely swollen eyes, all fluid upper and lower eyes so much so that my eyes are nearly closed some mornings. Has anyone else experienced this? Im just not sure if it is the letrozole or lingering effects of decetaxol (finished in 3rd July)
Hi Jacko8 and Sue C
I certainly sympathise with the achey and painful joints and the feeling depressed about not being able to do what I did before.
Perhaps you try the same as I did.
As the GP only follows the lead of the oncologist, there is not much point approaching them.
Try and contact your BC nurse or your oncologist and arrange an appointment for a review of your medication.
I did - and was taken off Letrozole and put onto Tamoxifen instead. It works differently, but is effective.
I have my joints back and my depression is gone. Tamoxifen gave me my life back...
Hi, I sympathize greatly with you. I've been on Letrozole for 18 months and, although I thought at one stage I was getting used to the side effects, the achy joints are def getting worse. So much so that I'm getting a bit depressed about not being able to do what I've done in the past. Get lots of other side effects but my GP has said it's part of taking the drug - nice! At what point do you take things further? Don't want to be a moaner but getting very down. Is it the GP who I should consult or Macmillan nurses? Good luck to you anyway and sorry for being negative.
I've been on letrozole for 9 months and the achy joints are definitely getting worse. Walk down the stairs in the morning, one step at a time, sideways!
Sleeping is fine. In fact, difficult to wake up in the mornings! I'm on amitriptyline, for other reasons, but my oncologist said this also helps with side effects of letrozole. So ladies, this may be worth asking your gp about.
No idea how much letrozole helps with fighting BC ( scared to google!) , but also scared to stop taking it. As long as I can manage, I will take anything to stop this horrible disease coming back.
i have been on letrozole for around 6 months. Worse side effects are aching joints and night hot flushes. Things that I think are making it easier are: taking at night time, bags of water (c2 -3 litres per day), and I exercise a lot. I find on th days I haven't exercise I am definitely worse the day after. It's not bad enough for me to ask for a review, and I have also noticed that side effects seem to ebb and wane, so for the moment I am going to stick with it. I would gladly try any tips people have. Xx
when I took Letrozole (2 months, then 8 months) I always took it at night, when I went to bed.
Never experienced any nausea - wonder whether that was why?
I have been on Letrozole for 2 years now, and my main problem is, as yours, the nausea, starting about 2 hours after taking it with breakfast. Also, terrible change of taste.
I too am wondering if I should take it at night but I am concerned that the nausea will make the nights even worse - disrupted sleep. I only get about 5 hours sleep anyway and feel constantly worn out.
What do you think? Did it affect you in the night?
Thanks a lot!!!
Hello Ladies - I'm from the southern USA. I'm 74 and July 9 started my journey through breast cancer with a lumpectory and HER2. And almost 4 years later I am still here. With a big BUTT!
I was so fortunate...My doctors were incredible. I neither hurt from surgery, though I almost died from an infection in my chemo port...really. Almost DOA. I went through radiation - no problem. My oncologist promised he would get me through the treatment and I did, and he retired. He put me on Letrozole. I am now less than 5' tall. I have lost 3 inches in height in 5-6 years. I take 1 Letrozole a day. I look pregnant. The weight starts under my breasts and sags to my bikini line (if old women like me have one, that is)! My feet swell, my arm started swelling two years ago. I am trying to eat wisely. I have a very bad back, and looking at the comments, I'm wondering if the drug isn't complicating and compromising me. Where walking was brisk and no problem, it is a horror to get up in the morning. You may be familiar with Fastum gel. I discovered it by accident, and it helps greatly. But you can't use it more than a week. It's not available here in the states. If you want it through your doctor's rx, it will cost you about $350 US dollars to have it compounded here.. I'm thinking all this extra weight is hurting my back. But if I can't walk fast or a lot, because of back pain, sciatica-type pain, or from just carrying this thing around, that may be why I can't exercise or walk. Sometimes when my husband is complaining of his back pain, I just smile. At any one second, I have pain in 8 or 10 places. Different all the time. I am trying to eat wisely. I tried putting on a pair of shoes the other day and had to change them because my feet were so swollen. All is good heart wise, and I don't have diabetes but I'm old enough, and have read enough to know that cancer loves fat, and that my heart is 74 years old, too, and diabetes ran in my father's family.
So if you are experiencing anything like I have - Please let me know. I'm not a "down" person normally, but i have a trip planned and I'd love being 20-30 pounds lighter by next June. And I'm getting angry and sad.
My new gp looked at me yesterday and shook his head. He said there's no silver bullet, and the diet doctors in town will give me pills and when you stop you double the loss. Of course, I knew that. My oncologist did the same thing. He told me it was unfortunate that nothing is available to help.
thanks for your suggestion which I have been trying - sadly side effects have continued to worsen and include nausea, joint pains, headache, low mood. All really miserable as my recovery from surgery had been going so well. Have now spoken to BCN and Oncologist who have suggested I come off hormone therapy and we will reviewonce radiotherapy has finished in August. Such a relief although it is going to take a few days for effects to leave my system.
Thanks for information on this forum as I have been reading through it regularly now and find it so reassuring as this can be a lonely journey at times.
I experienced nausea when first on letrozole and found that its better to take it in the evening. Hope this helps xx
Just wanted to say Hi!
Sorry to hear you feel rough....I can't improve on what all the ladies are saying in their responses.
I had a year on Cipla Letrozole ... 9 months on Actavis now 3 months on Accord.
I don't know whether it is down to time or what but I will stick with the Accord.
The chemist seem happy for me to choose.
I am stiff and achy when I get up in the morning( or in the night!)
also I have to take more breaks on car journeys as I get stiff and sore but a walk and a McFlurry helps!👍
Best wishes to all
Give yourself some time to heal! And remember the radiotherapy can also take it out of you, when you get there.
I was never nauseous on Letrozole, but then, even through chemo - I did better than most on that subject.
I started on the Teva brand and was given Activis for one month - after two weeks I went to the surgery and requested replacement with Teva. Activis certainly caused very low moods with me - and back on Teva all was fine.
Feeling heady and nauseous could be a sign of you simply being unwell - a call to your BC nurses might be helpful.
Like a number of you I thought I was coping well with surgery completed on 15 th June, and preparation for radiotherapy which starts next week. Was started on Letrozole 14 days ago and have just woken last couple of days feeling very nauseous, loss of appetite and heady and what I can only describe as feeling very low mood. Tempting to put it all down to Letrozole but wonder what others experience has been. I have also checked brand name as that seems to be relevant for some. My first box is activis then it appears the next box is Treva which will not help in pinpointing source of side effects.
I am sorry to read that you are struggling. It's just not fair after all of what you have gone through.
I am now 8 months post the end of my active treatment and these are my observations...
Depression and anxiety can be caused by Letrozole, but may also be due to a delayed response of the trauma you have experienced because of your diagnosis and treatment.
I was absolutely fine during my treatment and the first 2 months after it - and then I fell off a cliff. I worked my way through it and have now come out of the other end. So counselling may be a good idea.
I had a delayed reaction on Letrozole in respect to my joints and am now on Tamoxifen. The hot flushes have increased a little again, but I hope they will settle down and I put on weight much more easily. Otherwise all is fine and I am finally feeling really well again.
Physical AND mental recovery does take time!
It may be an idea to get in touch with your treatment team to perhaps shedule an appointment with the oncologist to review your medication? After all, your GP is not a specialist and only does what has been recommended by your treatment team.
I am seeing my oncologist on 26th July for another review of my medication and at a gues it will be the last time, apart from the annual check up. Everything has settled down and I am well.
However, should something go amiss in the future - all I need to do is ring the BC nurse team and they will schedule an appointment for me.
Hopefully you have an equally supporting Breast Care Unit near you.
Morning ladies, I have finished all my treatment my last herceptin injection was in may this year I had to have 21. Then put on letrozole, my side effects are hot flushes, depression, panic attack anxiety, my head feels horrible. I am 64 I phone the doctor who prescribe these and said how it was making me feel and he said it had nothing to do with the letrozole. Every time I get a new percription I get different makers. I feel like giving up all mess. Have now got to do counciling.
Sorry if I have made any one a bit nervous of going on this stuff.
X x x x
I have been taking Letrozole for nearly 2 years now with out too many side effects - still suffering hot flushes at night and interrupted sleep. However in the past few weeks I have felt really exhausted, sleep deprived, joint pain. I have now discovered that my GP just puts Letrozole on my repeat prescription and the pharmacy have the discretion to change the brands at will. I now realise I am on a completely different brand of the drug. I was actually considering stopping completely. I phoned my GP this morning after reading the posts in this forum and have requested that I be given Femara. Must be more expensive as I am only getting a 28 day supply to see if this improves the symptoms. I had not realised that different brands caused different side effects and that being given the drug Letrozole was not a consistent product! Doh!