Letrozole side effects

[CIgirl]

I've never seen my oncologist. A different one from the first time. Only spoken on the phone before radiotherapy. I had one lymph node with just one cancer cell. I said how do you know when you've removed the cancer and the infected lymph node and two healthy ones and given me radiotherapy that you've got it all? And he said, we don't. My particular cancer doesn't respond to chemo apparently.

And there's a small tumour on my kidney that they can't reach to biopsy so they are wanting to remove the whole kidney. I'm saying no. You removed my uterus, cervix and ovaries then said oh, it was benign, so I'm not losing a kidney that way. 

I've decided to cut my Letrazole in half until my body gets a bit more used to it. Just half a tablet a day. I'm so fed up with lying about like a beached whale. I want my life back! 

[Tigress]

Oooh @CIgirl how many of us go through this thought process?  I certainly do on a daily basis because of SE, not just the daily ones but the more serious ones likely to accumulate over time.  But I keep taking the pill every day.  I wasn’t aware of the histology of my tumour until literally this afternoon, when my surgeon’s office emailed  over the pathology report, so I’d been taking Letrozole in case my situation was dodgy.  Turns out, Stage 1, grade 1, no lymph involvement, LVI negative, no other tests done.  Now I feel that, in the context of having had BC, I’ve been lucky and that I should keep taking the AI because otherwise I could be throwing away some sort of perverse advantage.  

I’m 67 and am exceedingly fearful of developing dementia, like all the women in my family have done, so am genuinely not worried about making old bones.  But, as I cared for my husband who died of MND then cared for my mother who died of dementia, I really would like 10-15 years of stress-free life before the inevitable.  Well as stress-free as the neurological condition I have allows.  If I take the Letrozole for the appointed 5 years, finishing at 72, it may well give me those 10 years - then again, it may not and I’m mucking up what little time I have left.  Open to being persuaded either way.

Have you got the same oncologist as the time before?  If not, have you relayed the message about the 95% ( I wonder what the 5% have in common)?  Is it something you would be comfortable talking over with your children, if you have any (I don’t)?  Do let us know what you decide.  

[CIgirl]

I had breast cancer in 205 when I was caring for my terminally ill husband at home and I refused to take Letrazole because I was tired and depressed enough without taking that!! After he died, I saw my surgeon 2 years later and said ok, I will go on it now. He said to be honest we give it to all women but it actually only benefits 5% of them, so don't worry, stay off it.

After being clear for 5 years I started taking some herbal HRT which was wonderful, but after 2 years I developed breast cancer in my other breast, so I'm now on letrazole. The fatigue and jaw pain is so bad I'm questioning just why I'm taking it. I'm 80, for heaven's sake, and why take letrazole to extend my life if the quality of life is zilch? So I'm considering another rebellion! 

[_Pam_]

aww thanks for this.

yes I’ll give my consultant / nurse a call .

[SheilaJ]

Hi Pam

I didn't have any trouble changing brands.  The pharmacy were happy to accommodate, but also when I phoned the nurse at the cancer centre to discuss she liaised with the consultant who suggested anastrozole instead and sent a different prescription to the GP practice.  In the end I didn't switch, just came off the drugs altogether - had an appointment with the consultant who agreed, given balance of additional benefit for me compared with side effects of staying on.

I have read and heard elsewhere that a lot of women find the Sun brand doesn't suit them.  You DON't have to put up with it.  Try asking the consultant or breast care nurse to back you?  Good luck

[_Pam_]

Thanks for your reply Evie... reassuring that indeed GP’s and chemists will listen to patients requests.. 

Interesting that your GP changed her mind 😉.... yes will persevere with different chemists as definitely notice more side affects on different brand .

I won’t give up till back on the Accord brand , so annoying to have to be arguing once case though isn’t it .

Thank goodness for this forum as can rant and trouble shoot 

[Evie-S]

@_Pam_ - I’m on Tamoxifen rather than Letrozole, but my GP is happy to specify my preferred brand on my prescription and my local chemist always does his best to get it. When I originally moved to my new GP she claimed she couldn’t specify a brand - but for whatever reason changed her mind. I guess maybe different health authorities or GP surgeries have different rules, but I would definitely persevere and speak to local pharmacies. Good luck. Evie xx

[_Pam_]

This thread is so useful

I have been taking letrozole for last 2 months now onto third month and have noticed far more side affects since my latest prescription dry mouth / hot sweats/ lethargy / mood swings / joint pain etc .... remembered something about the brand of prescription may have impact as a lot have said on this thread and guess what ... my recent prescription is Sun pharmaceutical previous being accord.

So called chemist and GP and both claim they cannot  order in a named brand . I argued my  case but they were adamant that they get what ever given . Do I have to phone round all chemists and hope can get the accord.

Has anyone else had this difficulty ?.. managed to overcome it ?

[charlotte1]

Hi I am on letrozole for the second time, I had breast cancer in 2015 and was on letrozole for a couple of years but it gave me arthritis just in my thumb ! I was taken off of this and put on tamoxifen I had no side effects with this but was told when breast cancer came back that it obviously did not work for me.

I am now back on letrozole and been told for 10 years so that would be 15 years of taking these two tablets will I   stay on them for 10 years this is something I will definately re-consider after 5 years because of the effect on my body.  I already have osteopenia and am on Ad Cal and letrozole can affect your bones I am about to have a bone density scan which I would advise anybody on these tablets to have.  Obviously after the breast cancer coming back this is not a decision I will take lightly.

Side effects for me so far on letrozole this time is a few aches and pains in the morning and bad sleeping habit, also I have the dry cough mainly in the night.

I also will only take one brand which is accord (even though the chemist gets a bit touchy when I request these).

Interesting to read all the comments ladies and always keeping positive and taking lots of exercise keeps me going, well apart from the odd glass of wine or 2 !!

Maryx 

[catt57]

Hi Sheilaj, 

I was on Letrozole but it made me very poorly and had no effect on my cancer ,I stuck with it as long as I could but it just wasn’t for me, so I was also put on anastrozole and I have never felt better , I sleep better, and I’m a lil more with it, so yes you do need to try certain meds as some meds are not for all cancer patients , we also have to remember we are yes going through the same illness but we are all very different in our own biology so some meds work for other cancer patient's, and some for others, but I stress do please keep taking the anastrozole stick with it and see how you feel I do hope it works for you like it did for me but don’t give up.

I also read that they said that you were low risk, yes maybe for the cancer spreading but honey you still have that cancer and it isn’t going to go away I was told I was low risk until they found it in my lymph node and now they are watching me like a hawk as I should of been clear but I’m now on my radiotherapy treatment just say managed to miss having chemo, so keep going keep an eye on that lump check it every day feel for changes, also chat to your designated cancer nurse if you need to chat to her their is always someone who can help you through this journey.

Hugs Catt57 xx 

[SheilaJ]

Hi Mouldina

The joint pain is what I really struggled with as well, and I don't know if the not sleeping was mainly because of this - just so uncomfortable at night.

So on advice I stopped letrozole 6 or 7 weeks ago, and spoke to the breast care nurse again last week - the consultant had prescribed anastrazole instead, but when I asked if i needed to be on anything at all the response I got back this week was that they are happy for me to stay off everything, given very low risk.  Then yesterday I got a call asking me to go and see the consultant - immediately freaked out but now wonder if it's just about making sure that it's a properly informed choice on my part. 

I do think it's worth trying different brands, and talking to your cancer team about alternatives.  If there is other things available  you should be able to try them, and not have to just put up with horrible side effects. Good luck!

[mouldina28]

This thread is really interesting! I am on Zoladex and letrozole and my main issue is joint pain! I feel like I am 90 years old! I exercise regularly and try and eat well but the moment I sit down or lie down for more than a few minutes I know I will struggle to get up again.  I didn’t realise different brands could be worth looking into! 
Insomnia is issue as well! 

[catt57]

Hi Squirrel ,

I was on Letrozole  and it didn’t help me I had migraines was being sick dry mouth etc I got in touch with my nurse and asked if she would have a word with my consultant on my behalf,any way to cut a long story short she then prescribed me anastrozole, as I was post menopause’s , and these have helped me loads and I feel loads better being on them all you can do is ask hunni chin up and smile xx

Catt57

[Squirrel17]

Hi Redeemed36345

Just wondering if you can let me know which brand of Letrozole caused the lip problem as in the last two weeks my lips are dry, cracked and get red and sore.  Have tried lip balm but this seems to only work for a while and then I am back to the uncomfortable feeling. I was taking Accord which seemed okay but my pharmacist gave me Amarox (new one on me) which funnily enough I have now been taking for 2 weeks.  I have also noticed that my skin is drier.  

I have another six weeks supply of these so am hoping that after that I will get prescribed something different. 

Thanks.

[chrissy 10]

I agree that this is such a difficult decision to take. It is clear that the drugs cause quite severe side effects in certain folk and even my surgeon told me that around 20% of women give it up due to these side effects. 

I am in a fairly lucky position in that my tumour was Stage 1 and very small with negative lymph nodes so recurrence risk is very low according to both my consultant and oncologist( and using Predict online). The issue here however is that they have to follow the NICE guidelines which is to recommend as standard the 5 years of hormone suppression. 

I have decided not to take the tablets as I suffered from severe menopausal symptoms previously and know that suppressing my oestrogen will have a negative impact. I realise that this decision is not for everyone but I will continue to exercise and watch my diet and am taking a low dose of aspirin 3 times a week,  which in initial trials for early ER+ low grade breast  cancer has been shown to support the  risk of recurrence by 16%. 
clearly this is not a decision that I have taken lightly but my oncologist was not against it in my particular case. 
I believe that it is important to have some control over our bodies and treatment so am moving forward in this particular way but also stress that it won’t be right for everyone. 

[SheilaJ]

Hi everyone

I tried 2 different brands but got so fed up with the joint pain that I called the breast care nurse in desperation and said I just didn't want to take it any more- she advised to stop immediately and stay off for 6 weeks, to see if the effects are really to do with letrozole, then phone back.

That was last week and I already feel better.  I don't know what my other options are - maybe Tamoxifen as an alternative, or perhaps if risk of recurrence is low I'll just take that and not bother with the drugs at all.

Guess I'll decide when I have the discussion with the nurse.  

It is all a bit of a saga...

Bon courage, all!

[pollywally]

Morning,

1 year ago today I found my lump. I was 44 and pre menopausal. Quite surreal really. I’ve been on letrozole and zoladex since October when my chemo and radiotherapy treatment finished. I was initially on the cipla brand and the side effects were horrendous. Insomnia, brain fog, awful joint pain, night sweats every hour, hot flushes throughout the day...... I kind of put up with it. I was extremely tired, exhausted and emotional and I just wanted to sleep! I also didn’t want to bother anyone as my bc nurse was so busy.

Fast forward to last month! I was given a different brand. I was given sun pharmaceuticals and I know that some people have major issues but for me it’s working really well. Don’t get me wrong, I still have some side effects but no where near as bad. I get to sleep easily now, I have 1 night sweat and a couple of hot flushes. My joints are still achy but I no longer need to crawl upstairs!! I have changed my diet and cut out all caffeine. I’ve also started walking daily. I’m actually feeling more like me.

Maybe try a different brand and see if that helps? It does suck majorly that we have to suffer these side effects too x

[catt57]

Hi I e. Even on Letrozole since I was diagnosed with a 4cm lump in my right breast and yes I feel very emotional, mood swings, and can’t stop crying at the most silly things, my hair has not thinned out, my skin changed a bit, I put weight on .... major ouch, night sweats and the hot flushes, constipation, I’ve even now have bladder problems so yes not nice side effects take care we all have a long way to yet.

[sunnybear]

Hi,

I have just read your comments and they are a breathe of fresh air as I thought it was just me! I hadn’t associated Letrozole with the odd symptoms I am getting - leg pains especially after sitting/ lying down, dry hair, dry cough (not COVID). I also have very dry itchy skin and my face has come out in blotches which is why I was searching BCN, I think it is caused by the lack of oestrogen as my face is really dry and I can see lines I never had before.

thank you for reassuring me that I am not alone!

Sunnybear

[Squirrel17]

Hi All

Just read the various comments regarding side effects and thought I would just update after yet another year on this drug. I have now asked my pharmacist to add Cipla to the not to be prescribed list as I have found that this after a couple of weeks gives more severe hot flushes and prickly itchy skin. With regards to dry cracked lips, I thought this was just because of it being winter but maybe it is not, but can confirm that I have had this on and off since about November. It does seem to get better then get worse again but have not put it down to Letrozole, will have to monitor I recently had a telephone consultation with my oncologist who told me that I should insist on having the same make of Letrozole for the entire 5 years as if you keep changing this is likely to increase the side effects and that everyone reacts differently to different makes. He is a research lead in Breast cancer care so am assuming he should know what he is talking about. However, I know my pharmacy will not do this as I am sure that I just get whatever make they managed to buy at the cheapest price. Will continue with the drug though as I cannot believe that this would be prescribed without good reason. 

Take care all and keep safe and well. xx

[Pollensa]

Hi,

I completed treatment in December 2019 and have been on Letrozole since then. I already had arthritis which severely impacted my mobility, Letrozole just makes it worse. However my worst side effect is raging heat at night. My fan is on pretty much constantly. I never have a good solid 7/8 hours. Oncologist recognises problems but, according to him and BCN, it's something I'll just have to put up with!

Pollensa

[SheilaJ]

That is not a side effect I have experienced - well I didn't think it was worse than usual in a cold winter, am using lots of vaseline lip balm though!

The worse ones for me are tiredness and joint pain - interesting that Cipla is mentioned as maybe worse in this respect.  I am considering talking to the consultant about just stopping, as I am not sure what the point is if all the tumour has been removed, and another 4 years is a very long time.  I feel there is a sort of blanket 'belt and braces' approach, when actually may not be appropriate for everyone.  Equally don't want to just stop without taking advice.

Interested to know if anyone else has had similar thoughts, or acted on them?

[redeemed36345]

Anyone have painful dry, cracking, peeling lips?

[Fernandes]

Hi Venice,

Like you, I have a nightmare taking letrozole.

I have been it for 5 months now and for 2 weeks I have on and off headaches, diarrhea, and dry/burning throat. 

[Squirrel17]

Hi All

Have just read your comments on Letrozole and thought I would share my experience so far. I was diagnosed in July 2018 and following successful treatment have been on this drug for 13 months. I can honestly say that different makes have different side effects and seem to be different for everyone. I had a follow up appointment with my oncologist a couple of weeks ago and he even said that his patients all report different symptoms on different makes. So far I have been given six different sorts by my pharmacy and only one has had really nasty side effects - Sun Pharma - so have a note on the prescription not to be given that one.  I am not too keen on Cipla as joint pain seems a bit worse on these but have had no real trouble with any of the others. My side effects, apart from the joint pain, are hot flushes, mainly on waking, some weight gain (which I found out from my oncologist is also caused by some water retention due to the Letrozole - not mentioned anywhere on the paperwork I have read!) which is difficult to get rid off, fatigue which doesn't seem to change regardless of sleep amount, hair thinning, though luckily have quite thick hair so not too noticeable and of course the memory thing - I seem to forget the most commonplace names of things and end up saying 'you know thingumy or the thingumajig that you use to do whatever'. When I chatted with my consultant surgeon he said it was such a shame that having successfully operated, blasted us with radiation we are then told to take a tablet that has various side effects which you then have to endure for five years.  My only comment to him was 'well one down and only four more to go!' Love to all and keep on with the fight xx

[thurnefi]

---

@Venice wrote:

Hi everyone, I had a 3cm tumour removed almost a year ago. I avoided chemo but was put on Letrozole for five, maybe ten years.

I was reluctant to go on the drug, having researched the side effects but agreed to try.

I have psoriatic arthritis, so was concerned about the joint aches and pains, menopausal feelings, hair loss.

seven months of Letrozole, and my effects are as follows, and I would really like to know if these are similar to everyone else.

aches and pains.

insomnia, my biggest concern.

menopausal symptoms, getting hot at times.

cough , cannot clear cough especially at night, makes sleeping very difficult.

some reflux, wondering if this is causing cough.

hair seems to be ok but some thinning at  front.

very emotional, cannot watch films without crying.

I asked my GP to mention Accord by name on prescription  as had to change pharmacies as was prev getting different brands, and I prefer to stay on same brand.

Will be interested to see any comment on the above side effects.

Venice.

---

Hi Venice

I had surgery almost a year ago and have been on letrozole (also Accord) for 8 months now, so similar timings to you.  I also took a while to decide to take it (much to the annoyance of my oncologist, who couldn't see why I was worried...)  Anyway, I also had pre-existing arthritis, and my DEXA also showed osteopenia, so I am also now taking alendronic acid.

I am very stiff in my joints, especially first thing, or after sitting for a period of time.  I do find that this eases if I go to the gym and go on the bike there.  I also have hot flushes, much worse than when I went through the menopause.  I have bought some sage supplements, which the oncologist said were fine to take with my medication.  I haven't started, because I have just moved taking my letrozole from mornings to evenings, and I want that to settle first, so I can't report on any benefits or otherwise.  I replied to your other thread about insomnia - but yes!  I don't think I am more emotional, but I am very forgetful and my hair is much more dry and brittle now, and  spend much time and money on trying to keep it in as good a state as possible.  I haven't noticed a cough, but that might be that I haven't paid attention to it!  I do feel fatigued for a lot of the time, which I do attribute to the letrozole - just weary and lethargic, although this time of year doesn't help with that, does it?

I don't know if any of that ramble is of any help to you, but you are not alone...  xx

[Venice]

Oh, and another thing......bad memory! I forgot to mention bad memory, am forgetting things all the time!

rgds, V

[Venice]

Hi everyone, I had a 3cm tumour removed almost a year ago. I avoided chemo but was put on Letrozole for five, maybe ten years.

I was reluctant to go on the drug, having researched the side effects but agreed to try.

I have psoriatic arthritis, so was concerned about the joint aches and pains, menopausal feelings, hair loss.

seven months of Letrozole, and my effects are as follows, and I would really like to know if these are similar to everyone else.

aches and pains.

insomnia, my biggest concern.

menopausal symptoms, getting hot at times.

cough , cannot clear cough especially at night, makes sleeping very difficult.

some reflux, wondering if this is causing cough.

hair seems to be ok but some thinning at  front.

very emotional, cannot watch films without crying.

I asked my GP to mention Accord by name on prescription  as had to change pharmacies as was prev getting different brands, and I prefer to stay on same brand.

Will be interested to see any comment on the above side effects.

Venice.