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!
I sympathise so very much, always looking for someone who is having the same side effects, ie, like you, nausea. Have been on Femara for one year now,hoping it would get better. On the contrary, it gets worse. Can´t stand the sight, thought of food either. I am going to speak, again, to oncologist on 25th. He said, three months ago, that I could take Primperan, although my GP disapproves. They do help, nothing else does, but I am concerned about the long-term side effects. How I am going to cope for the next 4 years, heaven knows.
If you find a solution,please let me/us know. Thank you.
Best wishes anyway and xxx
Ihave been on Letrozole for over 2 years.since being picked up as needind a mastectomy by a routine scan,When my camcer surgeon said it would give me symtoms of menopouse I was sanguine because all had I ever ex perienced was mild forgetfulmess..
I was not prepared for hot flushes, sleeplessness, skin rashes, hair loss and joint pain.
Whilst awaiting scan for bone density, I find daily calcium/vitamin D tablets help joint and pain and hayfever Cetriziene helps hot .flushes
. My surgeon recommended very expensive thick and thin shampoo and condittionerfor hair loss blocking the shower.
A new doctor asked if I knew I has serroboeic dermititus? No but that explained the dry skin on my forehead any eyebrows and itchy scalp. Now hair loss and skin rashes are better with the prescribed shampoo and skin cream.
My surgeon also recommended taking Letrozole before bed so symptoms might take place whilst sleeping.
This works sometimes.
Thank you, Carolyn.
I have seen a member of the cancer team. He took my vision problem very seriously. He thought it possible that the "fuzzy vision" mentioned in the drug leaflet could have quite a broad meaning, and it was possible that the drug was affecting my eyes. He suggested that I stop taking the Letrozole for 6 weeks, then start again and have another check up at the cancer clinic. This way it may be possible to work out what happens when I stop the Letrozole and what happens when I start it again.
I have had photography of each of my eyes and am waiting for an MRI. It is obvious that one eye is worse than the other. The opthalmologist will see me after the scan.
I noticed that the brand of Letrozole is indeed Cipla. I have been taking it in the evening. I am quite short-sighted so not too aware of blurred vision, as my long distance vision is always blurred!
Has anyone else experienced effects on their vision which could be a side effect of Letrozole?
I had a lumpectomy and adjuvant radiography in early 2015. I have been taking Letrozole for 18 months to prevent recurrence. I also take Alendronic acid and a calcium tablet because I am borderline osteoporotic. I have experienced some (if not many) of the side effects that other users mention - joint pains, cramps, hair loss, loss of libido - but not particularly severely (!).
I am also short sighted and have NHS eye tests every 2 years. At my last eye test in September 2016 there seemed to be a problem and I was referred by the optician to my GP and then on to an Opthalmology Clinic. Following tests in each eye I was asked to take the driving test - both eyes tested together while wearing my glasses. To my astonishment, I failed and was told I can no longer drive. It appears I have lost some of my field of vision. I am still waiting follow ups so I am not sure of the exact problem, it all happened too quickly to take in - glaucome and ocular hypertension were both mentioned to me. The eye test previous to this happened before I was diagnosed and treated, and nothing showed up.
I had been aware that the vision in one eye was not as good as it had been, but certainly not that it was illegal. Indeed the eye specialist confirmed that I would not necessarily have noticed the change.
"Fuzzy vision" is occasionally listed as a side effect of Letrozole. My questions are:
Waiting to see an eye specialist and the cancer team. Would be very interested to know if others have had a similar problem.
Only been on letrozole for a week and feel really rotten ..... headache,lethargic, muscle aches etc. Are these side effects, or have I just got a cold and its a coincidence? I suppose only time will tell.
I was wondering if it's a drug that your body needs to get used to? I think if it were short term I could cope, but a year (or maybe more) is going to be challenging that's for sure.
Any advice from ladies on letrozole would be much appreciated.
Thanks. Sue x
I have been taking Letrozole for 9 months and, apart from the usual pains, have terrible nausea and a constant metallic taste. Has anyone the same problems and do they go away with time?
I have been taking Letrozole for 3 months now. I have developed the most horrible burning sensation all over my body - but especially badly in my hands and feet. I am exhausted and very low mentally. I also seem to need the loo more frequently.
I'm going to have to see my doctor because I can't tolerate this much more. Anyone else had similar symptoms?
I was on letrozole for eight weeks and then I gave them back. I was severely effected by sweating, and weeping , violent tempers, and leg pains. I told the oncologist she could shove em up her bum. I simply wasn't taking any more. After 4 days off them I was back to normal.
Now I am on exemestane . And I feel ok. After the lumpectomy and radiation I thaught my life could never be right again but now I am feeling much better.
life isn't over just different .
I have put on weight. Does anyone know how to counteract this?
@Guest user wrote:
Hello everyone can anyone help me with side effects from a change from Arimidex which was causing me really bad joint pain (particually in Ankles) My Oncologist changed the tablets about a month ago and since then I have been suffering from profound loss of appetite, over a stone in a month, which is making me very weak. Constant retching and nausea and headaches............as well as the usual hot flushes and aches and pains. I was admited to hospitial through a&e for a couple of days and they checked all bloods etc ans gave me anti-sickness pills which don't help much. Ended up discharging myself as it was hell and no-one knew what the problem was.
I had masectomy just over a year ago, chem, rads, herceptin since then. Had to stop Herceptin due to it causing heart damage but was due to re-start, now this! I feel more sick now than when on chemo! Has anyone else had problems like this or any idea what I should do? I'm really scared that it's come back already..........My Ankles are better though!
Good afternoon Carolyn and Judi thanks for your responses! It is comforting to know that we are not alone! I forgot to mention the fatigue, weak nails , constipation from time to time and memory loss!🙀
I was given Femera to start with then accord then clipa and now Manx!!!! I live in Cyprus and once you have been treated they aren't very bothered about your ongoing emotional or physical journey! The first time I noticed that the presciption had been changed I told the pharmacist I had Femera to which he replied, "is Femera " that's when I first had Accord!!
I agree Judi the forum is great 5 ladies from the April 14 chemo thread are having our send meet up next month!!' It has been my Bible living overseas! 😏
Hi rosie14 I'm about the same amount of time as you with the letrozole after chemo radiotherapy and herceptin even after all that treatment this medication is what I am struggling with many a time I have wanted to throw in the towel but I know I'm scared too because I know what this tablet is preventing I am on my second brand the first was cipla that really didn't work for me currently I'm on accord my side effect is a really stiff arm opposite to surgery side in a morning I feel about 80 it's so painful I find doing certain chores painful and my legs ache as well the pharmacist said to me there was no difference between one brand and another but I'm afraid I beg to differ femera is supposed to be the best which is the pure brand but my gp and pharmacist are reluctant because it is so expensive and it would be the very last resort some GPS will prescribe I know some ladies on here take it I went to to see my Dr the other day and asked her if I could chop the tablet in half I'm still getting the amount but not all at once I really do think it is helping I take half in a morning and half at night hope this helps Rosie love judi xxx ps what would we do without this forum so much info from other ladies it's been such a comfort to me since I started in 2014 plus I've found some great friends through it xx