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!
Why not give it a try and see how you get on. It takes a little while to kick in, so I expect you won't get any problems for about 6 weeks. If you feel sick at all, take the pill in the evening. Admittedly, I do get joint stiffness, but for me it is bearable. There are supplements you can take to help ease this, like cod liver oil.
If you find you can't cope on letrozole, go back to your consultant, as there may be other things you can try
Best wishes xx
I am starting tonite on Letrozole but not sure if I can put up with side effects.. I am 73 with osteopenia and arthritis severe in my hands and suspect elbows and lower back . I was I feel lucky I had ILC stage 2 very small. All testing was in my favor. I am going to try it but don't know if I can handle more discomfort. I also have several other problems that the ladies had side effects on. I don't want the cancer to come back but I don't want to be in more pain at my age. Just don't know what's right for me but am willing to try.
Hi Sue. That's good to hear you are coping with Letrozole so far. And reassuring to hear we won't all just shrivel up on it!! I guess they were avoiding Tamoxifen because of your womb issue and risks of cancers of the womb with T. It's a minefield isn't it!
I was fine on Tamoxifen so there may always be an option of switching back to that.
I really wish you all the best news for your mammogram and hope they don't keep you waiting too long for the results xx
Hi sueH-S. that is interesting to read your history. I too was diagnosed with lobular invasive positive nodes and highly oestrogen receptive ER8. I had mx chemo and rads 2015/16 as the mass was quite advanced. Then put on TMoxifen as hadn't yet been through the menopause. Chemo certainly brought that forward though!
just a couple of months ago during routine screening ( they were very thorough) the MRI scan showed a suspicious area of calcification. Biopsies confirmed this as a 2.5cm area of DCIS. Have just had a second mastectomy and thankfully all removed with SNB clear. So good news and no further rads or chemo. Obviously my risk is now greatly reduced as no breast tissue left but my Onc has switched me from Tamoxifen to Letrozole as now menopausal to prevent any distant mastises. I think their thinking was because this area of DCIS was there even though on Tamoxifen.although they are not sure it could have been there before and shrunk and just not shown up on the previous scans. As my first cancer wasn't clear on the mammogram or ultrasound. It's a sneaky thing this lobular cancer! It was only my thorough oncologist who called me up for an MRI and thankfully found it in time.
I'm feeling very unsure about the Letrozole so it is good to hear everyone's experiences on this forum.
Im hoping my mood will lift soon. Treating myself to some Reiki next week and a trip to London! And looking forward to getting back into my Yoga gently! Xx
So far I haven't noticed any aging. Skin and hair all fine. Any side effects seem to be short lived. I don't know how long I will be on letrozole. Initially I was put on it ( and zoladex) for a least a year because they were concerned about a mass in my womb, but this termed out to be fine. So whether this will change, I don't know. I get the feeling that as long as I can tolerate it, I will stay on it.
Having abit of a wobbly time at the moment, as first mammogram is next week. Be glad when this is done xx
It has been a while, since I posted. Lol - most notifications went into my spam folder!
Inititially I started with Letrozole for 2 months before my mx in May 2016.
Like some of you I feared - that is it - I am going to rapidly age. Oestrogen is so crucial to so many things going on in our bodies and I did not want to have my skin ageing quicker that it would normally - yes - I am vain!
Post my mx went through chemo and radiotherapy and started on Letrozole again at the end of September 2016. My hair grew back post chemo and I did not experience any thinning. Some of my body hair is not as 'vigorous' as it once was, but I am certainly not complaining about that!
Yes, joints in my hands and knees - seemed to be a little stiff first thing in the morning, but sorted themselves over the day. Sometimes I was a little listless, not quite depressed, but I became aware that much had to do with recovery of the impact of the past year and that ups and downs were to be expected. ANd I did not rapidly age, my skin is holding up fine!
For a short while I was on a different brand to my usual ones - and suddenly did suffer depression and more serious joint aches, etc., but this went away the moment I was back on my usual brand.
And then, one morning - trying to put on my bra and wanting to fasten it around my back - as I usually do - I had excrutiating pains in my shoulder joints and upper arms.
I could stretch and do all things as usual, but as soon as I tried to put my arms behind my back and move upwards - there it was. so, as usual I researched and found out, that in some cases Letrozole can cause
As this really caused my quality of life to suffer - there was no way I was going to live with shoulder joints of a 90 year old....I contacted my oncologist, who confirmed that this can be a delayed side effect.
So now on a break - and things are very slowly improving again. As of next week my regime will become Tamoxifen for the next 5 years. It should help - I shall report back, when I have taken them for a few months.
I am post menopause and was put onto Letrozole straight away, as I had a highly oestrogen responsive lobular invasive.. However I have now been told that, derspite being post menopause - 5 years Tamoxifen followed by 5 years of Letrozole would be a preferrable route.
Hope my ramblings are of help...
Hi Corrina. I've just started on Letrozole 3 days into it. I'm finding myself a bit emotional and gloomy! Not sure if it's the tablets! I have felt quite positive all through the treatment and now feel a bit down. I guess it's bound to happen at some point! I find the Best thing is to get on with things you enjoy. Hopefully it's just an adjustment period. I'm sure your forgetfulness is something similar. It can be a symptom of menopause.
Lets hope it passes! X
Hi Sue again! Ive just picked up some of your previous postings (sorry new to this thread) and sounds like you had a very similar experience to me, I was diagnosed initially with 2-3 cm lobular cancer in right breast which didn't show clearly on mammogram and ultrasound and we all had a shock post surgery to be told the mass amounted to over 10cm! I am quite petite with dense breast tissue so mastectomy was inevitable anyway.
Positive lymph node so chemo and radiotherapy all done. Have just had second mastectomy after VERY thorough screening over the last year and after a couple of false alarms they finally found a small area of DCIS in my left breast after an MRI scan. Mastectomy recommended again because of my size and risk. Nodes all clear phew! So no further treatment. Feels better now it's all gone! So just Letrozole to get on with! Xx
Hi Sue. Thankyou for your feedback. I've been weighing up the pros and cons and decided as I'm in the 'at high risk group' I need to give it a go! I managed ok on Tamoxifen so fingers crossed! I guess I'm worried with it completely blocking oestrogen I'll suddenly age quickly! Hair thinning dry skin , mood swings etc etc. That's me being vain! However it probably can't be much worse than some of my friends who are going through menopause naturally and having a hard time!
i have the DEXA scan next week. I already take vit D and omega 3s and work at keeping to a healthy diet. I am dairy free though so may need the calcium supplements? Though I take calcium in lots of different foods.
Day 3 of tablets so I'm committed to it now and like you say may not feel much of a change for a few weeks.
let me know how you get on further down the line. How long have you been prescribed the Letrozole for? Ros xx
I've been on letrozole for 6 months and so far I can say it's manageable. I take cod liver oil and a calcium supplement. Had a bone density scan which came out normal and will be repeated in 2 years. I do feel achy at times and have minor hot flushes. Nothing that I can't cope with. Rather cope with this then have a return of BC.
Best of luck. You may not feel any different for about 6 weeks.
Hi. I am sat looking at my box of Letrozole Teva brand just collected from pharmacist! I have been switched from tamoxifen as now post menopausal ( double mastectomy, course of FEC and rads to right side)
i was then on tamoxifen for 15 months and had very few side effects. No weight gain ( I am careful with my diet) and hot flushes were more like warm moments so not bad at all.
Lost all my hair after chemo ( even with cold capping) but it has grown back thick healthy and curly. Worried about hair loss on letrozole but hoping a good diet will help with side effects. I've been taking vit d supplements and have my bone density scan next week.
Well ive decided I need to try the letrozole so wish me luck!!
It would be good to hear from any ladies who have had a positive experience with Letrozole!
Hi all Im getting very absent minded and forgetting things . does anyone know if this could be a side effect of Letrozole? ive only been on it just over three wks xx
Hi again Helzie,
My lymhnodes were completely clear - they removed 3 with the SNB. In my case the MRI did not show the size of the actual cancer. There were two reasons, firstly because I had quite dense breast tissue and secondly because I had a lobular invasive. That devil grows tentacle like strands from the centre of the cancer (20mm) which are often only a few cells wide - hence the MRI could not pick it up. Post op (mastectomy, chosen by me, as I was not large breasted/best decision I ever made) the report showed the whole thing being 110mm. That was quite a shock, as you may imagine. So chemo was a 'have to do' simply because of the size. My biggest surprise was the time it takes for me to recover from the chemo and radiotherapy.
Hope you are recovering well.
Ah! Fiinally I've met someone else like me!! Shortly after my (shock) diagnosis in late Sept, I was put on Letrozole in late October (like you I was ER+ 8/8) as a treatment and to shrink the mass pre WLE. I could feel it shrinking almost immediately and when I had the US in mid-January the mass had halved before my surgery in Feb!! I did inform them in Nov/Dec, including surgeon at the time of the noticeable shrinkage but they stuck to the original surgery time scale. In hindsight I should have been more insistent on an earlier op date or even requesting a US at the time but this was all very new to me then and I was on a steep learning curve! How were your lymph nodes following surgery? Mine revealed a micro and a macro (6mm!) infiltration out of the 5 which were removed. All others were clear.The med team were genuinely shocked at this. I should state nothing was detected on US or MRI in November! In addition all my scans then, CT and bone all came back clear-a great relief at the time. Of course this new revelation changed things and I felt I was back at square one again. Of course now I also had to have chemo, whereas before it was always going to be rads only, if even that.
I also see you'll be on Letrozole for `10 years. That's good since anything I''ve read suggests this is the optimum time frame, as opposed to 5 years.
yes, I was on Letrozole pre surgery. The reason was not to give the cancer anything to live on, whilst I was waiting for it. It was an ER+8, i.e. the highest of the scale they measure receptiveness on. My operation was just over 8 weeks post biopsy results.
Post chemotherapy I am now on it for the next 10 years. 6 months and counting, lol....
Lej and Sue HS-From reading your posts, it sounds as if you were both on Letrozole pre-surgery, is this correct? What was the purpose of this, pls? Actually reading the thread I was reminded of the fact I, too had some (mild) hot flushes along the way, having been on it for for about 4.5 months in total. Onco told me to discontinue it during chemo.
This is a challenging question to answer. I went through the worst of my hot flushes, etc., whilst on chemo and shortly afterwards. Now 6 months on Letrozole they have nearly gone away. I still have about 4-6 a day, but they are just me getting warm, rather than breaking out in a sweat. Like you, I was on HRT, which I stoppen in January 16, when I started on Letrozole before my mastectomy in March. I guess it can take some time for the symptoms to set in - I started my chemo in May...and during the treatment months and shortly afterwards the menoppausal symptoms were at their worst.
Our bodies are just so individual.
It might be worth trying a different brand - I am on the Teva one, but it might not help. And you may also exerience other side effects. My joint pains and tiredness got much worse, when I, for one month, was on a different one.
BCC has published a really useful booklet with regard to menopausal symptoms and it might be worth to download it and have a thorough read
I hope it might help a little..