Letrozole Side Effects

Going through breast cancer treatment Hormone therapy
41

Hi ,

I’ve been taking Letrozole for 2 years since diagnosis in November  2014 and awaiting a mastectomy in Feb last year.

My surgeon did warn me that I would experience symptoms of the menopause. I didn’t worry because I had only had mild forgetfulness during my  actual menopause.

I was not prepared for hot flushes, joint pain, dry skin, hair loss, sleeplessness and loss of appetite,

My surgeon recommended expensive thick amd thin shampoo and conditioner on the internet, which didn;t work.

It wasonly when a new doctor asked if I knew I had serroboeic dermititis.?  No! but immediately the dry skin and itchy scalp were sorted. I put a upside down sink strainer in my shower drain to stop hair from blocking it,

I am awaiting a bone density scan results, but calcium tablets amd hay fever Cetrizine tablets daily, help with the joint pain and rashes.

The only other tip is to take the Letrozole at bedtime so some of the rubbish side effects take place as you sleep.

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please remember, Leaa, that, understandably, those having problems will report it & it is not necessarily representative of experiences generally. I also found that reading about problems increased my anxiety before starting hormone treatment, so see how you go, it may well be ok.
ann x

43

I have been on Letrozole for just over a year and have suffered with aches and pains and hot flushes. I take 1000 mg of Evening Primrose Oil to help with the flushes and plenty of exercise, mostly walking, for the aches and pains. These remedies have helped. My main problem is that my hair didn’t really grow back after chemo, my Onc thinks it’s the Letrozole stopping the growth and says I can change to either exemestene or Tamoxifen to see if it will kick start the follIcles… I would like to try Tamoxifen but hear that there is a lot of weight gain with it, I have osteoarthritis in my knees so dont want to put on weight. However, I feel so awful with so little hair that I might take that risk and just stop eating. Is anyone on Tamoxifen and managing to stay slim? Thanks. Sue

44

hi Sue D,
I did not need chemo & have the option of going onto AIs, but agreed with my oncologist to stay on tamoxifen. Since starting tamox 7 months ago, my weight has remained stable. I do watch what I eat, but not have made any significant dietary changes & have increased my activity levels.
ann x

45

Hi all

Letrozole side effects - I have a little story to tell, which may be of help to some.

Although, I guess it is not side effect clear - it does seem to depend on whose manufacturers Letrozole suits you best. Although the active ingredient is the same for all - the stuff they use to make up the actual tablet varies. And sometimes the side effects can be appearing or be made worse because of that.

I started with the Teva brand of Letrozole in February, before my op, chemo and rads. No problems…

Since October back on them. Initially on the Teva brand - again no issues - then they ran out of that one and I was given the Actavis brand. I became very depressed and had the most awful joint pains, starting to move around like a really old lady. So I researched…and it does appear that certain brands suit us better than others. After going back to the Teva brand - depression gone and joint pains gone…

The Teva brand seems to be best for me - for others other brands may be best. So if you and your GP are up for it, it may be worth experimenting to find the brand, which gives you the least side effects.

Hugs

Sue x 

 

46

My 87 year old mother has been on Hormone Therapy Femara since August 2016 since she was diagnosed with stage 2 CA Breast. She is an Angina patient too. 

 

Initially she faced severe diarrhea and hot flashes but that has got sorted now. Her major issue is exteme weakness ie where she was able to walk for half an hour morning and evening now she can push herself to only 10 minutes. She has developed a tremor too in her right hand, Got her complete thyroid profile done too but that was normal. Her BMD Dexa was pretty good for her age but due to her Angina her Calcium supplement was reduced and she was also advised not to take her ibandronate. So her spine base pain is excruciating when she has to get up after sitting or even when she has to take a turn while sleeping.

 

 

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Hi all, l have been on letrozole for a year now and at first suffered few side effects apart from being a little achy and being a bit more tired. I then had a lumpectomy in July and and four weeks of radiotherapy in October/November. I already had a few hot flushes after coming off HRT and also suffered from insomnia however in the last few months both have got worse. I am just wondering if switchingredients to another brand of letrozole might help. I am currently on Accord. Has anyone got any advice or comments?

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Lej and Sue HS-From reading your posts, it sounds as if you were both on Letrozole pre-surgery, is this correct?  What was the purpose of this, pls?  Actually reading the thread I was reminded of the fact I, too had some (mild) hot flushes along the way, having been on it for for about 4.5 months in total. Onco told me to discontinue it during chemo.

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49

Hello Lej
I have been on letrozole for 18 months and to start with got any old brand the chemist had in stock. I have found for me the best one is “accord” and now have it on my repeat prescription monthly. I found a huge difference in side effects between brands so it might be worth trying out some.
It’s important that the side effects are manageable for a good quality of life …as it .can be ten years of them now with new protocols .
Xx

50

Hi all Im getting very absent minded and forgetting things . does anyone know if this could be a side effect of Letrozole? ive only been on it just over three wks xx

 

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Hi Helzie, yes l was on letrozole pre surgery to try to shrink the lump but had the lumpectomy after about four months as it wasn’t shrinking as quickly as my consultant wished. I have just collected my latest prescription and it is Activis instead of Accord (which I have been on since the beginning). I believe it is quite a good make. I hope so. I will keep you posted ladies!

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Hi all,

It has been a while, since I posted. Lol - most notifications went into my spam folder!

Inititially I started with Letrozole for 2 months before my mx in May 2016.

Like some of you I feared - that is it - I am going to rapidly age. Oestrogen is so crucial to so many things going on in our bodies and I did not want to have my skin ageing quicker that it would normally - yes - I am vain!

Post my mx went through chemo and radiotherapy and started on Letrozole again at the end of September 2016. My hair grew back post chemo and I did not experience any thinning. Some of my body hair is not as ‘vigorous’ as it once was, but I am certainly not complaining about that!

Yes, joints in my hands and knees - seemed to be a little stiff first thing in the morning, but sorted themselves over the day. Sometimes I was a little listless, not quite depressed, but I became aware that much had to do with recovery of the impact of the past year and that ups and downs were to be expected. ANd I did not rapidly age, my skin is holding up fine!

For a short while I was on a different brand to my usual ones - and suddenly did suffer depression and more serious joint aches, etc., but this went away the moment I was back on my usual brand.

And then, one morning - trying to put on my bra and wanting to fasten it around my back - as I usually do - I had excrutiating pains in my shoulder joints and upper arms.

I could stretch and do all things as usual, but as soon as I tried to put my arms behind my back and move upwards - there it was. so, as usual I researched and found out, that in some cases Letrozole can cause

arthralgia - healthline.com/health/rheumatoid-arthritis/arthralgia

As this really caused my quality of life to suffer - there was no way I was going to live with shoulder joints of a 90 year old…I contacted my oncologist, who confirmed that this can be a delayed side effect.

So now on a break - and things are very slowly improving again. As of next week my regime will become Tamoxifen for the next 5 years. It should help - I shall report back, when I have taken them for a few months.

I am post menopause and was put onto Letrozole straight away, as I had a highly oestrogen responsive lobular invasive… However I have now been told that, derspite being post menopause - 5 years Tamoxifen followed by 5 years of Letrozole would be a preferrable route.

Hope my ramblings are of help…

Sue x

 

 

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I am starting tonite on Letrozole but not sure if I can put up with side effects… I am 73 with osteopenia and arthritis severe in my hands and suspect elbows and lower back . I was I feel lucky I had ILC stage 2 very small.  All testing was in my favor.  I am going to try it but don’t know if I can handle more discomfort. I also have several other problems that the ladies had side effects on. I don’t want the cancer to come back but I  don’t want to be in more pain at my age. Just don’t know what’s right for me but am willing to try.

 

54

Hello
I agree with sue …try the letrozole and maybe jot down any side effects you get (if any)
Just remember there are hundreds of ladies taking hormones and don’t have any problems and therefore don’t post here !
I take cod liver oil daily too …it stops my joints creaking !!
Best of luck xxx

55

I have been taking Letrozole for nearly 2 years now with out too many side effects - still suffering hot flushes at night and interrupted sleep.  However in the past few weeks I have felt really exhausted, sleep deprived, joint pain. I have now discovered that my GP just puts Letrozole on my repeat prescription and the pharmacy have the discretion to change the brands at will. I now realise I am on a completely different brand of the drug. I was actually considering stopping completely. I phoned my GP this morning after reading the posts in this forum and have requested that I be given Femara. Must be more expensive as I am only getting a 28 day supply to see if this improves the symptoms. I had not realised that different brands caused different side effects and that being given the drug Letrozole was not a consistent product! Doh!

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Glad you have sussed out the problem. .the generic brands can make a difference to side effects.
I have been on it 20 months …and I prefer “accord” which is now marked on my prescription.
Twice I have been given “cipra” brand and suffered blurred eye, itchy skin and more hair loss plus felt under the weather. .I think I read here that “teva” is another good guy …
Hope you feel better soon . Xx

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Morning ladies, I have finished all my treatment my last herceptin injection was in may this year I had to have 21. Then put on letrozole, my side effects are hot flushes, depression, panic attack anxiety, my head feels horrible. I am 64 I phone the doctor who prescribe these and said how it was making me feel and he said it had nothing to do with the letrozole. Every time I get a new percription I get different makers. I feel like giving up all mess. Have now got to do counciling. 

Sorry if I have made any one a bit nervous of going on this stuff. 

X x x x 

58

Hi Daisy
Sorry to read that you’re having problems with letrozole.
How long have you been on them? It usually takes about 6 weeks to kick in. I stick with the Accord brand, which seems to be the best of a bad bunch! My main issue is it affects my joints. Very achy at the moment. I’m not sure whether it can cause anxiety. Counselling will be helpful, but if your not happy, get a second opinion.
Best wishes xx

59

Hi Ladies

Like a number of you I thought I was coping well with surgery completed on 15 th June, and preparation for radiotherapy which starts next week. Was started on Letrozole 14 days ago and have just woken last couple of days feeling very nauseous, loss of appetite and heady and what I can only describe as feeling very low mood. Tempting to put it all down to Letrozole but wonder what others experience has been. I have also checked brand name as that seems to be relevant for some. My first box is activis then it appears the next box is Treva which will not help in pinpointing source of side effects.

 

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Hello Ladies - I’m from the southern USA.  I’m 74 and July 9 started my journey through breast cancer with a lumpectory and HER2.  And almost 4 years later I am still here.  With a big BUTT! 

 

I was so fortunate…My doctors were incredible.  I neither hurt from surgery, though I almost died from an infection in my chemo port…really.  Almost DOA.  I went through radiation - no problem.  My oncologist promised he would get me through the treatment and I did, and he retired.  He put me on Letrozole.  I am now less than 5’ tall.  I have lost 3 inches in height in 5-6 years.  I take 1 Letrozole a day.  I look pregnant.  The weight starts under my breasts and sags to my bikini line (if old women like me have one, that is)!  My feet swell, my arm started swelling two years ago.  I am trying to eat wisely.  I have a  very bad back, and looking at the comments, I’m wondering if the drug isn’t complicating and compromising me.  Where walking was brisk and no problem, it is a horror to get up in the morning.  You may be familiar with Fastum gel.  I discovered it by accident, and it helps greatly.  But you can’t use it more than a week.  It’s not available here in the states.  If you want it through your doctor’s rx, it will cost you about 350 US dollars to have it compounded here…  I’m thinking all this extra weight is hurting my back.  But if I can’t walk fast or a lot, because of back pain, sciatica-type pain, or from just carrying this thing around, that may be why I can’t exercise or walk.  Sometimes when my husband is complaining of his back pain, I just smile.  At any one second, I have pain in 8 or 10 places.  Different all the time.  I am trying to eat wisely.  I tried putting on a pair of shoes the other day and had to change them because my feet were so swollen.  All is good heart wise, and I don’t have diabetes but I’m old enough, and have read enough to know that cancer loves fat, and that my heart is 74 years old, too, and diabetes ran in my father’s family.

 

So if you are experiencing anything like I have - Please let me know.  I’m not a “down” person normally, but i have a trip planned and I’d love being 20-30 pounds lighter by next June. And I’m getting angry and sad.

My new gp looked at me yesterday and shook his head.  He said there’s no silver bullet, and the diet doctors in town will give me pills and when you stop you double the loss.  Of course, I knew that.  My oncologist did the same thing. He told me it was unfortunate that nothing is available to help.