Hi, I’m hoping there’s someone who can help me. I have been taking Letrozole for over 6 months now and I am really suffering. I have terrible joint and muscle pain, continual hot flushes, chills, insomnia and depression. i have contacted my breast care nurse three times and all she says is to keep trying. I went to my GP and he tried me with Anastrozole but it didn’t help either. I have only seen an oncologist once since finishing radiotherapy so I can’t ask him. I would like to stop taking them but my husband freaks out at the thought as he’s convinced the cancer will return if I do but how can I keep on the way I feel? I felt better while going through Chemotherapy! Is there such a difference between taking them and not taking them? I’ve tried Googling for answeres but no-one is prepared to give a definite answer. Has anyone else stopped taking it? I do so hope someone can advise me. Helen
Hi Helen
you poor thing but please dont stop taking the Letrozole! I’ve been taking it for 3 years or more and it did settle after a while. i am now pleased to be told i will probably take it for 8 - 10 years instead of the usual 5 as studies have proved it makes a difference. So, if u find it really unbearable what about talking to the Macmillan nurse? ours are really good at sorting that sort of problem. if not, persevere with the GP or oncologist. make an appointment and dont tell yourself u dont want to make a fuss. lol. please dont just stop taking it.
good luck x
I was having similar problems on anastrozole and felt like an old woman by the time I completed in March this year. But is is worth the struggle in my opinion! The side effects gradually diminish after stopping (although see my latest post today) and best of all…I am still here :))
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
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
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.
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
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
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.
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.
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
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
Hi Suzie x I am issued with the generic letrozole 2.5mg
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 ?
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
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
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.
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.
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.
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 ?