Letrozole

[Cee322]

Hi...I have been taking Letrozole for 6 months and the side effects with this prescription is running nose, sneezing, hot flashes and freezing all the time. I'm very active running, weight lifting, spinning, Bootcamp,yogi class and also eating clean. Very little to no joint pain due these intense type of excerise, keeps you from losing bone mask. However the memory delay hot flashes , cold flashes and thinning hair. I think you are right about the different brands of prescription and each having different side effects. During my Chemo treatment I had running nose and sneezing just terrible and bone pain. I had to walk everyday just so the pain wasn't bad and finally I started back running and weight lifting which help stop the pain altogether. I will call my doctor because these new pills is effecting my immune system. Thank you for all your help. May God continue to bring good health in your life😘

[Angel62]

Corrina I am the same....memory like a sieve and forget peoples names, what I'm going to say....the words just go....so you are not alone x

[Corrina]

Has anyone else suffered from memory problems and confusion when taking Letrozole.. thishas been a problem for me but no one else seems to be talking aboutthis so maybe its a rare side effect xx

[EB1965]

Hello - I was prescribed Letrozole in August 2017 following diagnosis for breast cancer.  I took the Accord brand for 2 months which I got used to and eventually had minimal side effects.  I then had repeat prescription and was given Cipla brand which I have been taking and am experiencing worse side effects including vision distortion (not good for driving), extreme fatigue and tiredness. So I've decided to stop taking them (only till I get new prescription) and have asked my doctor for repeat prescription to get the Accord brand.  Its obvious from reading all the posts that different brands do seem to cause different side-effects depending on the individual. This has been an extremely helpful forum from my perspective and hope it helps others. 

[Kate21]

HelenfClark, I feel for you! I used to get a lot of colds, and was very 'sinusy', even had surgery years ago, have you tried reducing or giving up cow dairy and taking a course of probiotics? I now use goats milk and butter, (nut milk on oats etc) and have apple cider vinegar in warm water each morning, only had one slight cold since my diagnosis 2 years ago, and my sinuses are so much better. Wish I'd done this years ago!

[Kate21]

Hi, I am just coming up to 2 years taking Letrozole and consider myself very lucky as I've had very few side effects, yes, one or two hot flushes a day but little else. About a year ago, for 3 or 4 months, my pharmacy kept giving me different brands and I definitely didn't feel so good in myself, felt very down, and my hair was shedding. I spoke to them about this as I'd read you should stay on the same brand, they have since only given me Accord, which I'd previously had, and I'm fine again. I know all this has been said before but I do wonder if my other lifestyle changes have also played a part...cut out sugar as I had a very sweet tooth, following a plant based diet including fruit with occasional fish but rarely meat (but I've never eaten much meat so that wasn't a problem for me), I also do more exercise and make sure I go to bed earlier, as I'm a real night owl! I know this isn't for everyone, and I'm not under any illusions that this is some magic cure, but I wanted to try it and can honestly say I feel much better for it!

[albalassie]

Am very interested to read about side effects of letrozole as I also am having problems with this.

i have been taking it since July 2015 and though I had no side effects to speak of then,find the longer I take it the more problems appear.

On the advice of my breast care nurse I stopped taking it for a month and as I noticed no real improvement in the pain in my thumb joints I started taking the tablets again.

My daughter was furious with me,and I had a lecture about wisdom of not taking them.

Now I am suffering from indigestion and wondering does anyone else suffer from this?

I have been told the experts do not think letrozole can be blamed as the side effects took so long to present themselves.

[Jill1998]

Hi Helen,sounds miserable you are certainly not on your own in seriously considering stopping due to side effects .Im not sure re impact on immune system - maybe you ask this in the "Ask the nurses" section ?

[HFCHants]

Is there any definitive research on Letrozole and its affect on the immune system? Prior to taking L I might have the odd cold (blocked nose, sinus problems and sore throat) b ut have now had viruses twice in 6 months resulting in chest infection. Also have bad sweats, aches and pains, feeling ancient, sleeping badly. Have been down the different brand route and found Accord was better than the others. However am seriously wondering about stopping taking it especially if my immune system is compromised. Been on it about 18 months.

[DJCV]

I too, am using Letrozole, and only thru reading posts was I made aware that there are different brands. I don't know what brand mine is, probably generic as all it states is "Letrozole".

I've been on L, since 10/15.  Experienced extreme bone aches, skeletal pain so intense as well as extreme leg cramps. I did a little research and found my magnesimun levels were low. Having 2 sisters w/medical issues and taking magnesium, I on my own began taking 250mgs daily. Within a week, no pain. I shared this w/ my Oncologist. She encouraged me to continue, as it was not interacting negatively.  

The fatiuge is another issue. I have not been able to solve that. I was a very active person, I rode my horse daily for 3- 5 hrs w/o being or feeling tired. Now I am lucky to get a ride in longer then 2 hrs, as I have to have ability to drive the 40 minutes home. Fatigue when it hits, it hits. 

My other side effects are fluid retention on my right side of my abdomin, thats right just the right side, vaginal bleeding, and the most annoying is chronic UTI's.  

Finally had enough, put all my issues on the table, as well as a creeping b/p, which was normally 110/70, and which is not 145/80, and presented to Oncologist. She has not answers, only responds "you're Cancer free".

Pressed my issues and now off Letrozole for 2 weeks. Three day, yes 3 day off, and I am a new person. Fluid retention down, no bleeding, (still on antibotics for UTI, so don't know there). Looking for alternatives or maybe nothing.  

My cancer was invasive BC, had bi-lateral mastecomy, 8 rounds of CMF.

[Julie Afridi martin]

Hi I am so glad to realise that I am not alone in my experiences. And really value all the comments posted.. I have been on letrozole for a year now and my symptoms worsen daily. I have continual flushes that stop me sleeping. Now the pains in my legs and joints is simply getting me down. I am going to my follow up next week but don' t know what to ask or where to go for relief! My daily life is fine although running on empty is tiring when I am working with young children or caring for grand children. Any suggestions about my forth coming consultant visit gratefully received.

[Motherhubbard]

If your surgery does not dispense then they can write on the prescription the brand that they want you to have. It's your chose and you can insist so do what is right fir your body. I am as I said on cipla and the odd ache but that is easing as losing a bit if weight. No hair loss and if I do get aching my gave me some calcium with vit d to take when needed and in fact help keep nails strong and hair strong according to my daughter in law who is hairdresser.

[June_BCC]

Dear All

Just sending you all a gentle reminder about our daily Live Chat service - Talk Together. This is a private chat room where you can talk to others who are also facing breast cancer in confidence. 

Talk Together takes place every weekday from 12.30 – 1.30pm and will not be moderated or accompanied by a nurse. If you would like to register or find out more information then please visit http://www.breastcancercare.org.uk/…/someone-…/talk-together. We hope that you enjoy using the service and that you find it helpful!  

Thank you.

June, moderator

[Amina1957]

Hi Yankee, I also have osteoarthritis and osteopenic, and all of my bones hurt, and don't know if it's the medication causing the problem, and I have also noticed that I am losing my hair as well, I have to shower sometimes twice a day or my body stinks, I personally put it down to the hot flushes I am having. Today I am contacting my breast care nurse as I am having other problems with the effects of my scars its only to rest my mind though, nothing to drastic. Praying you will feel better soon hun xxxxx

[Yankee]

Hello Ladies -- just found this thread by chance!  I have been on Letrozole for about 18 months.  I do find that I have a worse time with some brands -- Octavis the worst and not so good on the proprietary Femara either.  Do best on Teva or Cipla. Quite a few aches and pains, but as I have bad osteoarthitis, so who knows what is causing them!  I have had a few intense hot flushes -- which I never had during the menopause or chemo -- but not too debilitating.

My worst problems are hair loss -- now getting quite bad on the front and crown of my head (and, of course, just as upsetting as it was during chemo!); and the fact that my body smell seems to have changed.  This has gotten much worse in the last 6 months, and is really disturbing me.  Have any of the other Ladies taking Letrozole noticed this!

[Amina1957]

It's the pharmacy that choose the brand of letrozole the Dr just puts letrozole on my prescription so I never know what I will be getting. I didn't realise that certain brands have different types of reactions on the body. This afternoon i went to the shops, I only went into 3 local and it took me 2hrs just to get a few bits and bobs then came back home, I have got into my bed by 5.30pm totally exhausted, I really hate this feeling of fatigue and all the bones hurting plus my scars hurting. I have had a stabbing like pains today, its feels like the scars are being cut on the inside, could this be a problem for me

[Matty2]

Hi

I was put on Anastrozole (Accord) in December. Side effects really violent tropical flushes, aching long bones in arms and legs, hair thinning.

When I went for my repeat prescription I was given brand Teva, side effects are a lot easier, some flushes not too bad, ankle and wrist ache but not severe pain like before. Consultant said hair thinning was to be expected. I am hoping ay next repeat I can get same brand. BCN said request the Teva brand

Beryl x

[Motherhubbard]

Cipla is the brand I found best. They are the closest to the original make

[Annie62]

Sorry, that should have been POM brand!

[Annie62]

I've been on Letrozole for just over a year now and have only had problems with a couple of brands - Sandoz is one of them and I can't remember the other.   As I was already way past the menopause (I'm 63) I had no hot flushes or night sweats, but the joint pains especially in my hands have sometimes been bad.

I've found the Accord or Pogs brands are best for me.

[Amina1957]

Hi Helen r51 my Dr's are full and I do try to get the same dr every time as he knows my medical needs most. Well I had some shock today ive been left on my own and will have a night as well loool its so nice to climb into my bed early and the tranquillity of peace is surrounding me sooooooo nice 😊

[Amina1957]

Hi Suzie x I am issued with the generic letrozole 2.5mg

[helenr51]

Hi Amina, What you need is rest and care right now, you've been through so much physically and mentally and you need understanding. Try and see your doctor quicker and tell him/her everything you're going through and ask for help please? Could your doctor not talk to your family and explain that you need rest and to be cared for until you can get back on your feet a bit? Your body is still recovering and the Letrozole will bring you down futher. Keep in touch and let us know how you get on please? Take care xx

[Suziex]

Hi could I ask which brand of letrozole you take?

[Amina1957]

Thank you Milo 1 yes I do get hot flushes mainly early evening, I have taken up swimming twice a week but the last 2 weeks I've had an ear infection so not been able to go, it seems like my immune system is not very good. I do try to keep active when I can but most of the time I'm exhausted, next week won't be so bad as I have promised myself to get back swimming. As for walking it takes me ages to get anywhere lol flaming joint pains don't help and my scars burn and get stabbing pains in the area where I had my breasts removed. I am going to see my doctor on 9th March to see what he can suggest to help me with the pains, it's so depressing at times and it does not help when family don't understand why I feel so bad and get moody with everything all I want to do is relax and unwind if i want to sleep I can sleep, but cannot do this as I get called lazy and don't have the time alone. Sorry for the rant about my situation. Much love xx

[Amber_D]

Hi Ladies, thought I'd share my experience.
I was initially put on Anastrazole in August 2013, the pain I suffered in my joints and feet was terrible. I shuffled along and felt ancient. My meds were changed to Letrozole in April 2014 and gradually have got better, much better infact I feel almost normal again. (Whatever that is) I get the odd twinge and hot flush but nothing to complain about. I have also been getting accupuncture for the flushes which helps immensely. I guess what Iam trying to say is ask to change your meds if you're suffering and the side effects do seem to improve through time but it's not easy x

[helenr51]

Hi Amina, I sympathise with you as I suffer the same, I don't have any problems with my hair though thank goodness. I live on painkillers and have now been prescribed Oromorph for the really bad nights. I was given a break of a month off them and it was just starting to get better at the end of the month so they tried me on Tamoxifen for a while but it wasn't much better so now I'm back on Letrozole again. To tell the truth if it wasn't for my husband's insistence I would have stopped them a long time ago but as he said the alternative isn't to be considered, at least we are here! Be kind to yourself and rest when you can, try and find little things to cheer you up and that are not to taxing on your health. How are the hot flushes? Mine are nearly unbearable, especially at night. I have a 'cool scarf' that helps and thank goodness it's really cold so I can have the window open and a fan at the bedside lol There are pills you can get from the doctor to help them but I seem to be allergic to the one I tried unfortunately and the other didn't help at all. Sending love Helen x

[Amina1957]

Hi everyone,  I started letrozole last year November and I am totally drained most of the time,  all of my joints hurt, I have osteoarthritis and borderline osteopenic. I find it difficult to do things at home,  I'm walking a lot slower than I expected, also is it true that you can lose your hair over time as I am seeing quite a lot of my hair is falling out especially when I wash my hair. Prayers are with you all during your journey xx

[Motherhubbard]

I have been on letrozole since sept 13 and found the only brand that suits is cipla. Like you I found out thst are different costing that aggravate my joints.

[oldtowngirl]

I have been taking it for 18 mths now. I had difficulty at first because there are different brands of letrozole. The first few I tried made me very stiff but then I managed to persuade the doctor I needed the Accord brand that the hospital gave me in the first instance. I think it costs them more as it has to be ordered in specially but it's better for me, I'm only aware of being a bit stiff when I get out of bed but it works off by the time I'm dressed. The hospital were very interested to know that different brands affect people and issued a note to doctors in our area to try different brands with patients. Might be worth you all looking at which brand you are given and trying a different one. Hope that helps.

[Melena]

Hello Foodie,

I was interested to find you said you are going on Letrozole after the five years. I have been on it a year now and many of the symptoms have gone apart from the flushes and being hot most of the time. I sometimes wonder what will happen after the five years as I am sure many others do. So you have put my mind at rest.

[Melena]

Hello Helen, I had the aching joints for about 6 mths but they seem to have cleared up I do get the flushes. Please keep taking the Letrozole until you see someone.

[helenr51]

Hi everyone, I was lucky and saw my favourite doctor today but he doesn't know what it is. His opinion was that it could be lymphoedema but agreed it was in a strange place. When I got home I phoned my bc nurse and she has made me an appointment with the specialist for tomorrow which is a shock, I didn't expect to get one so quickly. So now I'm really worried, are they just being careful or is there something to be worried about? I could worry for Britain lol x

[skinnyminx]

Hi all,

Just a couple of observations about this thread.

In the UK, in the vast majority of cases, no-one can be forced to taken any type of medication.  With very few exceptions, everyone has to consent to medical treatment and his includes making the informed decision about whether to take a tablet.  When I read words to the effects that "my oncologist told me I have to take this medication for 5 years", "my doctor gave me permission to stop taking this medication" I do get a bit angry.  Doctors and other healthcare professionals can advise patients but, under most circumstances, cannot force you to do anything.

I think the decision about whether to decide to accept treatment offered (including taking an aromatase inhibitor) very much depends on one's attitude to risk.  I am somewhat risk-averse and my mass was multi-focal, 5 cm and aggressive so I weighed up the situation and decided to proceed with the full house of treatments which was offered.  Of course, 5 yeas later, I will never know whether or not I would have still been here had I declined any of the treatments (although I suspect not if I'd declined surgery).

Helen - I hope you feel better soon and, should you decide to go ahead with it, that Tamoxifen agrees with you better.  I was originally told 5 years on letrozole, then 7.5 years, then 10 years, now it's back to 5 years letrozole followed by 5 years Tamoxifen (my oncologists believe this is the best protocol in my situation and they are wary of the lack of evidence about long-term implication on bone health of taking letrozole (to treat primary breast cancer) for more than 5 years).  Good luck with your GP appointment.  Personally I think that a breast cancer patient presenting to primary care with a new swelling and with 2.5 stone weight loss in a year, merits immediate referral back to outpatients but I'm no expert. 

[helenr51]

Hi, I've been off Letrozole for three weeks now as the oncologist said I could have a break to give my body a rest and then I'm due to start Tamoxifan. To tell the truth I have' t felt all that much better. I was at the doctor's on Monday as I've noticed a swelling under the mastectomy site just under my ribs but it was a locum I saw and at first he said maybe it was due to exercising .....no! Then he said it was fat! On only one side? So I've got the courage up to go back this morning and ask to get examined again, fingers crossed. It never ends does it? I agree about the five years but don't be surprised if it changes to ten years as mine has just done lol Best wishes Helen x

[kar235]

Hi Helen,  how have u been? I get to see my oncologist this Fri. Pain in my arm is still really bad to the point where I've convinced myself that it must be broken, mad thoughts eh. To be honest tho, I can't see myself going thro 5 years (at least) with this, there are alternative meds out there, so hopefully we will get offered something else. thinking of u x

[CillDroichid]

I was on letrozole; it felt as though someone was driving red hot pokers through my right knee. I couldn't lie down to sleep because of hip and joint pain.

After six weeks, I was so ill from lack of sleep and fatigue induced migraine my Oncologist was ready to admit me.

Told her I couldn't take any more pain & agreed I stop taking it; we'd try something else once the letrozole was 'flushed' out of my system.

10 days later I was in Spain walking the Camino, no problems, other than the expected blisters and muscle aches!

I'm now taking exemestane (Aromasin brand name) for the last two weeks and so far so good. Some side effects, hot flashes, waking at night. But nothing compared to the pain I was in before.

[helenr51]

Hi kar235, I phoned my bc nurse last week and I have an appointment tomorrow with the oncologist to discuss the Letrozole. i agree totally with though about the pain, I felt better while going through chemo than I do now. There's a lot of people who are going through the same and I know of others who have had to stop it altogether. I'll let you know how I get on tomorrow but to tell the truth I'm not holding out much hope.

[kar235]

I stopped taking Letrozole a week ago because of the pain in my arm (not op side). The pain was excruciating, I would've rather gone back to the chemo. I rang onc secretary to inform her that I'd stopped and am now waiting for someone to get back to me. Surely they don't expect people to go thro 5 years of pain? I'm ok with discomfort, along with the flushes and the insomnia, but there's only so much a person can be expected to take surely!. Helen go back to your GP or try Macmillan, don't take no for an answer. Thinking of u x

[Doz1949]

Oh sweetie bless you that's not the way things should be 😧 I put weight on as most do from this treatment so you really do need it sorting out xx
Keep on at them till an appointment comes through! Or land on their doorstep till someone will see you! Sending a hug xxhugxx

[helenr51]

Thanks Doz 1949 but when I woke up this morning I honestly felt the worst yet! On the verge of tears sitting on the toilet not being able to move because of the pain. I feel worse now than this time last year when I was going through chemo and I'm losing so much weight too. I've lost 2 1/2 stone since this time last year and at first I was quite happy but now it's getting worrying. I weighed myself last night and I've lost another 2 lbs. I've left a message on my bc nurses answerphone to make me an appointment with an oncologist so hopefully I'll be able to see someone soon x

[Doz1949]

Helen.. You can always contact your McMillan nurses they can deal with everything and give so much advice on everything.. They have plenty of clout 😀 do try to persevere honey as it does work and it does eventually ease of.. Honestly xxxxx

[Toulula]

Your right there to hell and back 6monthes out of my life roll on 2015 get back to normal xxx

[helenr51]

What brilliant news! It's like being between the devil and the deep blue sea, on one hand Letrozole does work but on the other it makes some peoples lives a misery. I have asked my bc nurse to make me an appointment to see an oncologist to discuss what happens next and hopefully someone will listen to me. I didn't know I could still see an oncologist and the last time I saw one was unfortunate. It was just after my radiothotherapy had finished and I went to the hospital to discuss what happened next or that's what i expected to happen. in walked a young lady oncologist who proceeded to discuss my forthcoming radiotherapy, I explained i had just finished it and she then blamed her misinfromation on not having my notes. How could she treat me when she didn't have them beats me. She faffed about for ten minutes most of that time talking to my husband about her forthcomeing holiday. She examined my radiation site and said all was well and an appointment would be made for a years time. I have phoned fou rtimes now trying to speak to someone about the bad side effects of the Letrozole but i keep getting the same answer 'Try and persevere'. I am trying believe me but the pain, constant diarrhea, hot flushes and depression are so getting me down. Thank you to everyone for their answers and concern, it helps so much. Hopefully I will get to see someone and get the chance to talk it over. Fingers crossed 🙂

[Milo1]

Hi,  I had to beg my onc to come off Letrozole as I could barely walk, was in constant pain and very depressed, she asked me to give it another 2 months so she could look at my next scan. That was last christmas and as my liver mets had been stable for 12 months she agreed and I have been off them since, I feel like a new person, the depression has gone, It feels like a black bucket has been lifted from my head and although i get achey the deep joint pain has almost gone, I am teetal and caffiene free eat very little processed food and walk,cycle or gym for an hour every day, yesterday my onc pronounced me as still stable, some mets have started to calcify although I still have a large spread which has not changed, she said I am fairly unique to her as in 2011 I had a bilateral mx, chemo, stage 4 and classed as unsuitable for a trial by a liver consultant as over 3 tumours and spread, and given 3 - 6 months to live, I feel so grateful to be in the position I am in now and agreed yesterday that I would consider going back onto Letrozole when the mets get worse as it did work.

[Doz1949]

P.s I do think we blame all our aches and pains (which are very real) on medication we take 😔 but time is a great healer for most things, and let's face it girls we went to hell and back and it does take time for everything to settle down xxxx

[Doz1949]

Hi
I have been on Letrozole for almost 4 yrs now and I can honestly say the last couple of yrs have been ok... I do still get hot flushes but not so harsh.. I don't ache anywhere near as much as the first yr!
I opted to go on the trials at our Oncology Unit for Letrozole I am a nurse and work alongside the Oncology wards, the tests so far are proving extremely positive and now there are signs that this Medication can be used to stop growth in very small tumours so my opinion is that it's well worth putting up with the side effects as they don't last anywhere near as severe as when first starting treatment!
I do agree with the post below about different brands.. To start off with I think we all go on Femara, but then we get the generic brands.... I,ve had about 6/7 so far thankfully non have really made me feel worse.. So I,ll just go with the treatment plan, I hope you can talk to someone regarding your worries re this drug... Love to all you Letrozole ladies xxx

[twiggy53]

Dear Helen,

I, also am taking Letrozole.   I have been suffering from severe hot flushes for some time now.   I last saw my Oncologist a month ago and mentioned my symptoms.   He said that my breast cancer was female hormone led and therefore I could not stop taking the tablets for 5 years.   The alternative is worse.   I have great sympathy with you but please think about your long term health.

Best wishes,

Ann

[Lily200]

Hi,

Helen you can at any time ring in to the hospital and ask to see someone as you are still under the oncology team for quite a while. I recently asked to see mine and its 6 years after my dx. I either ring the breast care nurse team or more recently asked my gp to make a decision on my treatment, which was letrozole. She said a gp can't make this decision, wrote to the onc and an appointment came quite quickly. So please keep trying or ask your gp to refer you again. I was better on letrozole than I was on tamoxifen but that is not the usual way around. One other avenue to look into, is the brand of tablets you are being given. I had been having femara, a more expensive letrozole tablet but on my last batch the chemist said they couldn't access them. He looked up the medical code and found another manufacturer called Cipla who make an identical product.Nearly through my first new box and no reaction so far but that is normal for me on these. Some people even have heart palpitations due to the coatings on cheaper/different brands, so this might make a difference to you. It may not, but it is another route to investigate. We would need to know a lot about your history to know how much you need these tablets and what risk might be associated with stopping them. They keep a lot of people free from cancer but for others it is only a slight improvement depending on how hormone positive your bc is. That's an onc decision. If you are a primary lady, just remember that it is very different if you progress to secondaries so that is why everyone is trying to encourage you to keep going. They are very effective tablets for many people but so much comes into the decision like your age, type of dx, type of bc, nodes affected, etc that raise your risk but the tablets put points back in your favour to balance it. Every one of us might have a different % for each treatment but the docs will try to push it. I am sorry to hear that they are getting you down. You need to get help with this decision or you can't really weigh up what you are chancing, or not. Good luck Lily xx

[Motherhubbard]

I have been taking letrozole for a year now and I know how you feel. I felt like an old lady at times but thankful now settled. It started at my hips and when down to my feet . I went yo the doctors after the first couple of months to ask should I take calcium , I was convinced my bones were going brittle, she gave me Valium with with d and told me I can have two aday. I tend to tajes when aching or still. Still slightly stiff in the mornings it when sitting for a while, however if it means I am now cancer free I will carry on taking it. I gave also noticed an increase in my weight around the middle since taking it which I think does not help. Keep persevering with it , it will ease off. Hope that thus hels. Bev