I am starting on letrozole this week after stopping anastrozole (Arimidex) after six months because of evil side effects. I am going to take it every other day for two weeks, then I will take it two days then miss a day for two weeks and so on.
I did this with anastrozole but I could not manage 1mg a day of it. All the side effects kicked in big time after two months of slight s/e's. Really awful time.
Letrozole has a "half-life" of two days, meaning I can safely miss a dose because there is enough in my system from the day before. According to the little booklet the breast nurse gave me, letrozole can diminish or even shrink existing tumours.
I am worried about the dose being 2.5 mg whereas anastrozole was only 1 mg. Can anyone help me on this please? Is it a more powerful drug which can turn out to be worse than the anastrozole (anasty tablet).
Going back to your first question, I agree with Loolarch and Sandra49. Most people are drawn to a web-site like this once things have started to go wrong, so the comments are bound to be more negative. You are unusual in thinking ahead and looking for the pros and cons.
I took Letrozole for about two and half years before I realised I was in trouble. During that time, I was regularly asked how I was getting on with Letrozole and I thought I was OK. It is difficult to tell the side effects of the drug from the effects of the menopause. I was 69 when I started on Letrozole, so way past the menopause. I only gradually realised that I was getting more cramps in different places and feeling in more of a fog than before. Was this menopause? was this ageing?
Two things made me question the drug. I developed glaucoma and was worried there could be a connection with the Letrozole. The cancer specialist went through the assessment tool with me. The connection with eye problems is possibly not really there. Also, it seems the preventative effect of Letrozole is highest in the early years and decreases as time goes on.
The other factor which un-nerved me was that I began to lose weight without really trying. You might have thought I would welcome this, but after a few weeks and a few kilos, I got scared. I have put back some weight now I have stopped the Letrozole. I think I have lost muscle mass, but sadly not the fat. I continue to take the alendronic acid and combined vitamin D/calcium to prevent against incipient osteoporosis. I still get annual mammograms.
This forum has been very useful. It has put my feelings about the side effects into perspective. It is all very individual. However, the drug is a very powerful one, and I would have benefitted from more explanation on how to cope with its effects from the beginning. I signed consent forms for surgery and radiotherapy, but nothing similar for the drug regime.
Pippi - I wish you the best in your treatment. It is good to hear what others have to say, but ultimately the decisions have to be your own. Good luck.
I've been on Letrozole for three months now (two different brands so far, and no difference between them) and side effects have been very little problem. I do get hot flushes but no worse than I experienced during menopause. I think Its likely that people who are having little or no problem are probably not even looking at this forum, let alone posting, so you might get a biased view of the likelihood of problems.
Good luck xx
Side effects have got a bit better on letrozole. I also think the impact is very dependent on how far into the menopause that you are. I think I also suffered horrible symptoms at the beginning because before being diagnosed with breast cancer i had been on HRT for two years. So the combination of losing HRT and a drug that takes away oestogen was pretty grim. I did also get bladder infections at the beginning. Symptoms have got better over time although there is an ongoing impact on my bones and I am do get more sweaty and tired (though tiredness could also be down to the surgery). As I have mentioned in an earlier post I do not think I will be on Letrozole for 5 years but might be on the drug for 2 years (which I understand is the most productive time). So you may be lucky and you may not get many symptoms or they may be controllable. Whether you stay on the drug is a different matter - and that I am sure will depend on your risk factors and the impact of the side effects.
All the best.
I have also been stuggling with Letrozole which I started to take at the end of May.
I had a second opinion from a different oncologist about the need to take the drug and how long. She also went through the NHS predict tool about reoccurence. Basically Letrozole is about protection from reoccurence. You are entitled to get a second opinion which I found really helpful
I have also returned to work and I am struggling with tiredness and pain in my joints. I will be taking a view going forward iwhether taking the drug is tolerable to my quality of life. I may also ask to try another drug in the Letrozole family. I will also consider whether I take the drug for the full five years. I doubt whether I will as I have a low risk of reoccurance although the drug is protection for the longer term (15-20 years). Apparently the drug does the most good in the first two years (they say 2-3). The predict tool helped me really see my risk and allows me to think about my risk of staying on and coming off the drug. Infact even though i am low risk I am prepared to stay on with the drug and have the side effects for the time being.
So you might want to get a second opinion including using the predict tool of your own circumstances.
I am in exactly the same position as you and on the same drugs. How are you getting on now?
Interested to hear that the change of brand of the Letrozole made a positive difference for you.
It is indeed a very powerful drug with a variety of side effects (none of which seem to be good). I would be interested to know what vision problems you have been experiencing. Since you are also suffering migraines, it sounds as if the vision is associated with that.
I have experienced problems in my field of vision and have been diagnosed with glaucoma - this is apparently a slowly developing condition, yet it developed within 2 years' of my starting Letrozole. I suspect a connection with the Letrozole, but since few patients seem to report vision problems, it is difficult to establish if this might be the case. I hope that your vision problems, like the migraines, are only temporary.
My vision problems however, are not temporary. I am now suffering daily soreness and occasional clouded vision as a result of the glaucoma drops. I have to have regular eye tests to continue to be able to drive. In other words, my independence is under threat. It is ironic that my current discomfort may be the result of addressing the side effects of the cancer drug. Especially so since I was assured after the operation to remove what was a very small grade 1 cancer that I no longer had any cancer and that the drug was just to prevent the possibility of it recurring.
I have stopped taking Letrozole but I think I may have suffered permanent damage - not only to the eyes (which may be coincidental) but also to my bones, as the CT scans show I have the beginnings of osteoporosis. Yet there was no discussion of the side effects of this drug - it was just prescribed routinely.
These posts show that there are many reported side effects and many women who are having to endure them.
Hi, was on the Accord brand of Letrozole for 6 months. The first two months, I was fine and suddenly I couldn't walk and the pain in hips and back unbearable. My doctor and oncologist kindly switched me to Femera, the original brand, and the difference was unbelieve. I am back to walking the moors again and no pain in hips and back.
Not all plain sailing though - I am suffering terribly with vision problems, migraine and low mood.
I hope you feel lots better soon. it seems a long journey and not what we all expected. Take Care. xx
Just letting you know that youre not the only one ,extreme side effects on my part ,was told to continnue ,and changed medication 3 times, some ,it seems have no problems, i have had many if not all bad or disastrous side effects. Not living anymore, stopped two weeks ago and now i can get out of bed...well see how it goes...
know that its a difficult choice to go against docs recomendation but iv stopped crying and can now walk 20 min which i was not capable of doing since LETROZOLE .
SO living with the thought of getting cancer again but also getting out of bed
What can i do but try to stay positive
Just letting you know that Iv been told Im overreacting to how Im feeling on these hormonal drugs! Took Tamoxiphene had to stop i couldnt lift a box of kleenex after 7months . Changed to Letrozole and pain was awful ,eyes went bad, abdominal cramps, bad headaches ,Depression ,panic atacks ,and much more...
Doc told me to change to Teva exemestane.. something , went into a humain zombie could not get out of bed after 30 pills, looking at walls ang not getting up ,not able to talk, wanting to go to bed when I wake up ! Im an old teacher!!! . Ive been told BC would come back if Idont take the drugs.
I understand ,but dying with a pill... chimo and masectomy and radiation were much eazier. Love my job but cant even do 25 min of activities like walking and talking.so stopped taking pills 2 weeks ago, Ican now lift a kleenex box and no longer take two hands to lift a coffee mug. Must be getting better. Have a wonderful partner who helps ,he didnt and still doesnt know how to help, he doesnt want to loose me but see how difficult it is for me. I do want to live ,somehow those medications are killing me. Still Im stopping the drugs.
Hope to have helped a few readers in showing that youre not alone in having IMPORTANT SIDE EFFECTS
Ladies I was stage 3 BC and was given Letrozole for 5 years initially! During this time the brand has changed at least 5 times all coming with their own side effects!
Flu like pains, hair and lashes thinning and brittle nails!
At my Onc appointment in February I grumbled about the side effects and he said I could take a break to see if it made any difference. I had been taking it for 3 and a half years.
I have been off it since and don’t intend going back on it unless it’s a matter of life or death! He said there wasn’t much medical evidence to prove that staying on it for over 5 years was beneficial.
After a month I realised the flu like symptoms had gone and my nails are now much stronger. I still seem to have thinning hair!😮
Hi Flora B. I had lumpectomy Fec/T, and 15 days if radiotherapy. Followed by 15 herceptin injections.
I was to I I’ll have to be on hormone therapy for 10 years. I am afraid I can’t do lol that time on these pills. I am 65 years old, I think the bone pain I could handle nd the tiredness. But wanting to kill yourself was such a frightening experience for me. I am the 4 one in my family to get breast cancer. I am not carrying the gene.
My mind is defo not the same I am so forgetful and that’s not me. Plus my eyes re bad now. Got cataracts in both eyes.
Myminds in. Spin.
Sorry to read about your experiences with Letrozole. They have much in common with my own, but are much more extreme. Like you, I had a stage 1 cancer and had radiotherapy. Both the surgery and the radiotherapy were well explained, but the Letrozole was not. I was quite surprised to learn I would have to take it for 5 years. In fact I gave up after 3. I see that you took it for much longer. When I visited the cancer clinics at 6 month intervals I was routinely asked how I got on with the Letrozole and for most of the time I was able to say I thought I was getting on OK. But there are two points here which were not made clear to either of us - firstly that the side effects are similar to menopause side effects which we could well be experiencing anyway, and secondly, that the effects take a LONG time to build up - years, rather than months.
It was only when I had evidence of damage to my eyes that I decided to question the value of Letrozole. The oncologist told me that having taken it for 3 years it had probably built up sufficient protection for me. So, this begs the question as the how long it should be prescribed. I thought the standard period was 5 years. You seemed to be taking it for much longer. Now I have given up the hormone treatment I have been discharged by the Breast Clinic. Apart from the annual mammograms, they are not monitoring me so are not in a position to assess the effects of stopping the treatment. This is one reason why forums like this can be so useful.
The questions we now want answered are whether we have suffered any irreversible damage from using this hormone therapy. I know that my eyes are permanently damaged, but cannot be completely sure that is because of the Letrozole. I suspect that, in addition, my bones are worse, but the oncologists I have seen do not seem to be sure. My GP suggests that the bones can be partly built up again by the continued use of Alendronic Acid.
Do you know whether you have suffered any permanent physical damage? As for mental damage, I do not think terms like "Brain Fog" are much use. It is hardly scientific and is quite perjorative. I felt it was much easier to come to terms with having a small breast cancer than it was to cope with a wide range of possible side effects, some of which could be longer lasting and more damaging to my wellbeing and independence.
I wish you well, and hope you will continue to recover from the side effects.
i can totally agree with what you have wrote on here. I felt like that after only 5 months. Benn off the letrozole now for 4 weeks and I must say I feel a lot better. But I have got to go back and see my oncologist next month so I surpose he will want me to take something different. But looking at the side effects they all seem to cause the same symptoms. I am at a loss as to what to do.
I was diagnosed with stage 1 Breast Cancer August 2009, had the op and readiotherapy, and was put on Letrozole Noveber 2009. I was prescribed Legtrozole and took it until March 2017. I was given no indication of the side efffects when put on the drug. Slowly the side effects started to build up and I went from an active woman horse riding,canoeing, walking ,photography,yoga, driving long distances, gardening, and Fund raiser , until in March 2017 I ended up wreck. Always been a competent driving I started to feel nerviouse with out any apparent reason. My eyes became very sensitive to light and, felt as if my eye bals were too big for the sockets. They became extremely drey and I had to give up wearing my contact lenses, which I had worn for at least 25 year. A vist to my GP was met with the advice that they would improve when the weather changed???. I was putting drops in about every hour and limited the amount of driving I could do. Then the panic attacks started and I found I was racing around a shop to get out and seek sanctuary in my car. I give up horse riding, when the horse tried to throw me and roll on me. I belived because my anxiety was being transferred to the horse. I loved walking in the hills until ond day I set out and my limbs felt so rigid I feared I would not get back to my car. When I ceased the drug on medical advice I spent two weeks on a sofa hardly able to walk because of the acute pain all over my body. I would burst in to tears for no reason. After 8 years the phrase Super Menopause and Brain Fog appeared in the medical conversation. I had twice asked my GP if I was starting with dementia, his reply was "I have alwasy beeen able to undersatand you. A none answer. I have been on a Mystery Tour, a Roller Coaster of Medical Knowledge that they didnt seem to want to share with me. Well 10 months down the line and having been sign posted to the Snowdrop Centre for Talking Therapy and neck and upper body massage, I am now feeling like a human being. I am nowhere the same person I was 8 years ago. OK so some will say that the diagnosis of cancer does that to you, but I believe that the drug has changed my personality it made me incapable of making rartional decisions and took me into a very dark place. But I am fighting back one day at a time, and making my life worth while, small steps. I had faced up to the diagnoseis of cancer and been positive because everything had been explaned very clearly to me , but regarding the drug Letrozole it was as if no one wanted to warn me of the side effects so I could be prepared and not suffer the frightening experence that it turned out to be.. I take termeric golden milk which has helped in healing my broken spirit and body. Wishing everone the peace and love to over come and complegte the jouney on Letrozole.
Hello Pili Pala
I believe that Letrozole has seriously affected my vision and caused glaucoma in both eyes. I had an eye test 6 months before diagnosis with a small stage 1 tumour. The eye test was normal for me. I had the tumour and some lymph nodes removed and a 15 day course of radiotherapy. I was put on Letrozole immediately after the operation, and told I would take it for 5 years. It is difficult to sort out the side effects of a drug which has similar (but worse) effects to what we experience at this stage of life. I didn't feel exactly well but was glad the cancer had gone.
After 2 years I thought I needed another eye test. There is very little literature about Letrozole and eyes. The patient leaflet only briefly mentions it. I was eventually diagnosed with glaucoma in both eyes, and loss of field of vision - this means I have to take additional vision tests in order to keep my driving licence. Neither the oncologist nor the opthalmologist thought there was any connection between this vision loss and the Letrozole. But I was upset enough about my eyes and I stopped the Letrozole.
The opthalmologist tells me that glaucoma is very slow degenerative disease. Yet in my case significant damage happened relatively quickly. It is a year since I stopped the Letrozole, and as far as I can tell, the glaucoma is stabilised. The period of damage coincides with the period I was taking Letrozole.
I suggest you get your vision tested as soon a possible, in particular your field of vision. My glaucoma didn't show up on the other tests. If there is damage, it is best to catch it soon.
All the best.
Hi all, I started on Letrozole last September and almost immediately it started affecting my eyes. I went to my GP and optician and was diagnosed with dry eyes. They became very painful despite applying drops throughout the day. When I saw my oncologist she confirmed that it was due to the Letrozole. During my radiotherapy in November I was told to stop taking Letrozole for a while and surprise surprise my eyes improved! Since going back on them in December however they are worst than ever. I have now reached a point where I struggle to open them at all, they just burn so much. Has anyone else experienced this? If so can you please tell me for how long I can expect it to last? Seriously thinking of stopping these meds altogether as I can't continue lioke this.
Hi Brendie I just read your post this is the same things I am suffering from. I have stopped taking mine I had only been on them for 6 months. At one point I felt like killing myself. I have been wondering if anyone else had had these feelings. Let me know how you get on.
I wonder if anyone can help me. I've been on Letrozole for almost a year now. I was diagnosed with Stage 3 Breast Cancer in 2015. Having had Chemotherapy, Radiotherapy and a partial mastectomy, I then have been taking these tablets.
I enjoyed a holiday abroad for two weeks, before commencing on these meds, and flying has never been a problem. But, since commencing these meds, I have had anxiety issues. I have suddenly had a fear of open spaces, heights and this scarily appeared when I was flying on our last holiday!! Is it these tablets, or something else that's suddenly made me have this problem? I can't believe it, I'm usually such an outgoing person, and out of nowhere this happened.
I'd truly appreciate anyone's opinion on this x lol x I'm sorry if I sound like I've lost it, but this anxiety problems has only appeared since I've started these meds, so this is what I'm blaming x lol x Anyone else had similar symptoms?
Thanks everyone xxx
Annie, just wanted to say sorry to hear your news and send you a hug through the ether. It's all very unfair. Hope you get access to the best advice and treatments and have many more years to enjoy. Xxx
Hi Sgagliardi, I'm not on your regime but sending you a big hug and acknowledging your post. I know where you're coming from as I was told on Thursday I have lung mets, and I'm just coming to the end of my radiotherapy. Absolute bummer, isn't it? My Onco was very upbeat about it all, easy to treat and lots of options. I'm on Letrozole at the moment, and it looks like I'm going onto a new drug that's only been out for four months. Two Oncos can't be wrong, can they? Onward and upward, then. Well just learn to live with the cancer, but we'll be damned if we're going to die from it! X
Pammie - how are you getting on now? I have been on letrozole for about 3 months and I am still getting daily headaches (as well as hot flushes) - I have been told that I will be on Letrozole for 10 years - so I am desperately hoping the headaches will go away soon!
I had that for a while, but after a few months it wore off. Make sure you drink plenty of water xx
An update about my experience with Letrozole.
I have been taking it for just over 2 years. I reported vision problems in a previous posting. My opthalmologist now diagnoses my problem as glaucoma and says there is nothing at all to link it to the Letrozole. However, the cancer team suspended the Letrozole for 6 weeks. During this time I re-took the Esterman driving test, and this time I passed. This may, of course be entirely co-incidental. I only managed to find a few internet references to eye problems and Letrozole and they mostly linked to the same researcher in the US. Neither the Opthalmologist nor the Cancer team seem to feel there is a real link.
However, the cancer team have said it will be OK fin my case to stop the Letrozole. This is because
(a) I have already taken it for 2 years
(b) I will already have derived key benefits during that time
(c) Because my cancer was very small grade 1 with clear lymph nodes, I am very low risk and the added benefits of Letrozole are relatively low
(d) I have mentioned other side effects which I have found more or less intrusive.
(e) There is a "legacy" effect to taking the drug - this lasts for approximately as long as the period of taking it.
It seems that whatever the drug, there will be real problems with identifying side effects. Some from Letrozole are obvious, and commonly mentioned - joint pains, for instance. But some of them are similar to what to expect from growing older. For instance, I have been losing hair while taking Letrozole, but I was also losing some hair before I started taking it. I also found it difficult to identify what was going on during the six week period when I stopped the Letrozole. It is not easy to identify when something isn't happening. Certainly, I didn't experience the "trigger-finger" effect, and my nails may have seemed stronger (as I am still taking calcium tablets). I don't remember getting any cramps during the time off the drug, but I suddenly got one soon after I restarted.
One thing that I have been wondering about is whether the side effects develop or build up over time. This was questioned in another post. After 1 year of taking the drug I went through a six month period of strong abdominal pains and bloating. Investigative tests revealed nothing. At the time, I described it as a very severe period pain. This seems to have been cleared up by adjusting my diet and reducing/eliminating gluten (an easy diet option to take these days). I was later told that I had been tested for gluten intolerance and I was OK. However, it seems that any change to diet may have an effect. I also noticed it seemed relatively easy to lose weight (though in the past it had been harder). I lost 5k in 3 months without trying too hard. Since stopping the Letrozole, I am slowly putting this back on. Could this possibly have been due to the Letrozole, even though it didn't kick in for over a year after starting the drug? The vision problems (which may not even be a side effect) started about a year and a half into the drug regime.
It seems impossible to disentangle these changes in the body. After all, time passes and the body ages. I am very grateful for all the medical attention and treatment I have received. My concerns have been listened to and taken seriously. We have to take responsibility for looking after our own bodies and adjusting our life-styles.
At the end of the day, I am grateful for screening -
I just hope that nothing else goes wrong!