Letrozole Side Effects

[maryminder]

Hi Ladies

I have been back on Letrozole for about 3 weeks now following a 12 week break due to SE's, have found this time that by mid evening I get very very cold my hands and feet become like ice blocks, it's like the chills when you have a bad infection, can't stop shaking no matter how many clothes or covers I put on, this goes on for a couple of hours,  didn't have this before it was usual joint/muscle pain.

Has anyone else has experienced this and should I contact my Oncologist or BCN?

Best Wishes

Mary x

[dancingpip]

Hi angabb54 - Have you run your pathology through the predict tool? http://www.predict.nhs.uk/predict_v2.0.html at least if you do that then you will be able to talk over the results with your consultant and more able to make an informed decision. When I found my predict results I decided to ask if I could be prescribed a lower dose of letrozole but the consultant actually agreed that I could stop taking them completely. Also - I understand that taking calcium (a bone density drug) is not good for the body unless it is combined with magnesium - it is probably worth doing some research on that before you meet your consultant too. All the best Pip

[Happyboobs2]

Hi, I agree with you Carolyn...I don't feel too bad with Accord. I tried Cipla and Actavis.

I get my from Boots and tell them I only want Accord. So far they have been very good.

xx

[Carolyn52]

Hello judi
I collected mine Friday from boots chemist but I have my prescription marked "accord only". Hope they don't discontinue them ...aagh.
I have heard that Dr reddy and teva are ok too as a option.
I think it's cost as maybe accord are a little more expensive. .a lot of pharmacists buy in bulk at the best price so unless you have your prescription marked ..they will fob u off with a cheaper option!

Hope you get it sorted ..it's miserable enough without all your extra side effects ..
Xxx

[ollisj6]

Hi. Carolyn just read your post and don't think I've gone balmy but the last time I went to pick my letrozole up the pharmacist told me accord was no longer available and after this batch it would be actavis brand instead I did have a bit of a panic attack as the accord suits me and I had major joint pain before but that was cipla brand I suppose I won't know until I've tried are you still able to get accord thanks love Judi xxxxxxx

[Carolyn52]

Hiya ...if you have been taking Cipra brand ..bin them they are terrible ..I had them twice and felt horrible on them . I insist on Accord brand monthly now and they are more easy to tolerate but I think the side effects accumulate over the time ..I have been nearly 2 years on them now but they are a powerful little pill ...
Yes bone strengtheners also cause more bone pain ..I have a monthly injection called denosumab ..which can give me a real back ache for a few days each time but needs must .
Definitely speak to your oncologist / breast care nurse as there a few other options which might suit you better .
Xx

[angabb54]

Thank you so much Helena, so good to hear from someone.! Xx

[ladybowler]

angabb

Hello and welcome to the forum where you will get loads of help and support form the wonderful ladies on here.

I can not help with regard to letrozole, but I will say that when my oncologist realised that I had some osteoporosis in my lower spine he changed me from the original letrozole to tamoxifen.  I am post menopausal and tamoxifen for usually prescribed for pre manopausal ladies.  I am not taking any additional drugs for it at the moment as my GP said it was the low end of normal and there are life style things I can do to prevent it getting worse, exercise etc

You are right and I have read on here how different brands do produce different side effects, I believe it is something to do with the coatings because the main ingredients are supposed to be the same hichever brand.

I really hope that you get some answers and a resolution to your problems with letrozole so that your quality of life can be improved.

helena xx

[angabb54]

Hi girls...this is my first post.

Decided to take the plunge and join in the chat. I had a mastectomy of left breast in Jan 2015 no chemo or radiation. I've been on Letrazole for over 2.5 years to mop up oestrogen as the tiny cancerous bit they found in my breast after removed it..was HER positive. I was was told it was for 5 years... side effects are vile , pain in joints, exhaustion, low libido and mood, extreme fatigue, sleeplessness, itching skin, anxiety, thinning hair, horrible headaches and eye disturbances and stomach pain. I was a fit 60 year old when diagnosed. Since this drug  I feel I've aged 30 years. My mum is 87 and is in less pain and distress than I am! However all said and done I felt I was getting on ok and dealing with the SE..( I do have a high pain threshold) This last two weeks have been MUCH worse and after reading some forums I am thinking it could be because I have been given the Cipla brand of Letrazole...last night I felt so poorly thought I might go to hostpital ...in bed now for the day, which has been necessary on and off for the past two weeks. Today I am not taking the tablet and intend seeing GP Monday to get an appointment with a consultant. This really is a powerful toxic drug.and at just 2.5 mg...what is going on? I also have been told I must take a bone density building drug as have a bit of osteoporosis in my back..tried this too and got joint pain big time as a side effect of this one!....Hoping to get some answers in the next few weeks, meanwhile, keep chins up fellow sufferers and will post soon. 

I 

[Angel62]

I'm like you exercisec and walk daily i find that realky helps me. I taje it st night too and I'm a littke warm first thing in the morning but seem fine the rest of the day. ALos drinks lots of hit water and lemon through the day. Been taking it 2 months so far x

[Carolyn52]

I take vitamin c daily ( fizzy ones ) and cod liver oil tablets ..not sure but I do think that they both help.

[Anniej]

Hi Suzi Ann, my homeopathic practitioner recommends dandelion tea and extract for getting rid of water. Haven't been bothered with that, so far. For my hot flushes I'm using sage tea and fresh sage in everything! Salads, soups, lasagne, sauces. You name it and in it goes ! I seem to be managing the Letrozole ok - so far, but just two months in. Perhaps the Glucosamine with Chondroitin and vit C is helping? I also attend TaiChi and yoga at Maggies which I swear is helping joints. 👍🏻 X 

[Carolyn52]

Hello Suze Anne
Phew ..as you are going to be on letrozole for the long haul ..you need to be comfy with the side effects ..
You would need to check out water tablets with your doc as with liver probs ..they might affect them. Hubby takes them for copd and they do help water retention. Natural things like lettuce and celery can help puffy feet and I find peppermint tea has the same effect !!
Don't suffer though as you do need quality of life .
Xx

[suzi-ann]

I also take 2.5 Mar-Letrozole and stopped drinking wine but my oncologist said I could drink Boost if you are familiar with it and that would be considered a dairy product indirectly.  I had a wee little cancer in my left breast near my underarm and had it removed along with 2 of 5 lympth nodes removed and kept my breast as i refused to have it removed not knowing exactly what they would find while I was under.  I had only one chemo treatment and thought my life was over because I suffered every side effect listed plus more but I did go for 25 radiation treatments.  Two years in remission and was told I would be taking letrozole forever.

[suzi-ann]

I basically have the same symtoms, knees, back, fatigue sometimes, minor hot flashes and puffy feet but that could happen because I have liver problems also.  What can I take besides letrozole and vitamin E  to deflate my fat feet?  I walk and raise my feet but not much of a change.  Could I take water pills?  I  am in remission with breast cancer for now - 2 years but kept my breast.

[Sue C]

Thanks Carolyn

It does seem to be getting worse. Normally I can manage......just having a bad day I guess.

Saw consultant the other day for a different matter and she said could switch to tomoxifen possibly, but im going to stick with it for now and check up not til December! The reason I was put on it was because I have a large fibroid that they were concerned about. This has turned out to be benign but I am concerned about that if I switch. So really want to stick with letrozole for as long as poss. 

Its just getting me down today and feeling abit sorry for myself😢

[Carolyn52]

Hiya sue
Welcome to the letrozole club ..I'm sure its accumulative after time too but I'm prepared to put up with se as it's doing a good job with my secondaries.
Yesterday I was in Primark talking to my sister in law and the sweat was running down my face literally ...I looked like I had been taken out the freezer and was defrosting !!
If the symptoms are so bad ...maybe mention it to your bcn ..and try another hormone?
Hugs xxc

[Sue C]

Hi Ladies

Been on letrozole for about 10 months now and finding it quite a struggle today. Got used to the joint pain in my knees, hut now its attacking my back and its really uncomfortable. Together with the hot flushes, fatigue and general blur feeling, getting fed up😢

Thanks for listening xx

[dancingpip]

Hello MollyMoo

Sorry to hear you are suffering the dreaded side effects too.  I am sure that there must be numerous folk who just sail through and don't have any of the aches, pains, hair-loss, blurry vision or acid reflux ..... but I wasn't one of them!  My first oncologist seemed so determined to 'go by the pharmaceutical book' that when I had done 3 years (out of 5) on Letrozole and I asked to stop them because they were making me miserable she said current practice required that I should continue to take them for 10 years now and she would also prescribe me a drug for depression!  That was when I seriously started doing my own research and trying to work out why most people (if not everyone) are on the same dose for the same period of time  - and yet, realistically, everybody has a different pathology.  I came to the conclusion that it must surely be for statistical research.

When I heard about the predict tool             http://www.predict.nhs.uk/predict_v2.0.html                I was able to put in all my details bar one .....the Ki67 result (to say how aggressive the tumour was)  I had not been given that information.  When I asked my new oncologist for my Ki67 information he told me that I had not needed that particular test because I was low risk for having a recurrance.   I was staggered - why had I not been told this 3and a half years earlier?  Why was I on 2.5 mg of Letrozole a day which seems to be the same dose as people with a higher risk?  I had already decided that if he advised me against stopping Letrozole then I would request to be prescribed a lower dose. As it was, he agreed that I should stop taking the drug.

My situation and pathology may be very different from yours but I would advise you  & everyone to be pro-active in the decision making process and don't just accept drugs upon drugs.

Lifestyle and diet changes are vital too; Oh, how I miss the alcohol and all my favourite dairy products!

I will still see my oncologist annually and can always go back onto Letrozole if necessary but at the moment I am happy to be labelled 'non-compliant' and I just wish I had done my homework sooner.

Wishing you all the best.

Pip

[pamela7021]

Hi ladies I'm also on letorzole and my joints or getting so painful now my hands or getting to the point that I can't tex I'm standing in bath at the end of the day with very cold water in to hell with pain in my feet I think I'm going have to speak to ,y doctor now about changing it but I'm so frightened that the cancer will come back as anyone change to another tablet and is ok I'm getting to the point the I can't sleep thinking that if I change it's going to come back the letrozle must be gold as it's the first tablet they put you on but I really am in so much pain now thanks for reading this 😍😍😍😍😍

[MollyMoo]

Hi Pip

I was diagnosed with invasive lobular BC back in April and after two lots of surgery have been prescribed Letrozole and bisphosphonates. I am currently having 15 sessions of radiotherapy. I have been taking the Letrozole for only 4 weeks and already have aching joints and have started to gain weight even though I eat healthy and exercise regularly.  I have read about the hair loss and other side effects and I too am considering if the benefits do outweigh the side effects.  I am only 49 and have been told that I will need to take Letrozole for10 years.  Is the predict website accurate because surely oncologists wouldn't prescribe unless it is needed.

[dancingpip]

Hi Rosie14

Re: survival rates - 

Sorry to hear you are suffering side effects. Nearly 4 years after my original diagnosis I had reached the stage of being prescribed drugs to treat the side effects caused by the letrozole.       

I then came across the predict tool - http://www.predict.nhs.uk/predict_v2.0.html  - and found that, in my case, taking letrozole, which had caused me debilitating problems would only improve my survival by 1 year.  Armed with this information I worked on improving my lifestyle and diet then talked with my oncologist who accepted my suggestion that I stop taking letrozole. Naturally I am fearful but at least I no longer have a range of side effects to deal with.

Wishing you all the very best.

Pip

[jeffreyj]

Hi ladies Ihave been on letrozole but I have had to come off of them due tothe bad side effects they have given mea dry itchy cough and have made me lose wait they put meoff of my food  they made my voice go funny as well glad tobe off of them has anybody eleshad thease symptoms I would be galto know jeffreyj

[Sue C]

Hi Kan
Yes I've experienced this recently, but did have an infection too which took ages to go. I think the letrozole makes your eyes more oily but I'm not sure if its treatable.
Let me know if there is anything you can do about it, as it does sometimes affect my vision in one eye during the day xx

[Kan]

Hi All,

I have just finished chemo, EC x 3 and docetaxol x 3, due a double mastectomy at the  end of Aug.

I started letrozol just under 2 weeks ago and since I have developed extremely swollen eyes, all fluid upper and lower eyes so much so that my eyes are nearly closed some mornings. Has anyone else experienced this? Im just not sure if it is the letrozole or lingering effects of decetaxol (finished in 3rd July)

x

[Sue H-S]

Hi Jacko8 and Sue C

I certainly sympathise with the achey and painful joints and the feeling depressed about not being able to do what I did before.

Perhaps you try the same as I did.

As the GP only follows the lead of the oncologist, there is not much point approaching them.

Try and contact your BC nurse or your oncologist and arrange an appointment for a review of your medication.

I did - and was taken off Letrozole and put onto Tamoxifen instead. It works differently, but is effective.

I have my joints back and my depression is gone. Tamoxifen gave me my life back...

Hugs

Sue xxx

[Jacko8]

Hi, I sympathize greatly with you. I've been on Letrozole for 18 months and, although I thought at one stage I was getting used to the side effects, the achy joints are def getting worse. So much so that I'm getting a bit depressed about not being able to do what I've done in the  past. Get lots of other side effects but my GP has said it's part of taking the drug - nice! At what point do you take things further? Don't want to be a moaner but getting very down. Is it the GP who I should consult or Macmillan nurses? Good luck to you anyway and sorry for being negative.

Spoiler

[Sue C]

Hi all

I've been on letrozole for 9 months and the achy joints are definitely getting worse. Walk down the stairs in the morning, one step at a time, sideways!

Sleeping is fine. In fact, difficult to wake up in the mornings! I'm on amitriptyline, for other reasons, but my oncologist said this also helps with side effects of letrozole. So ladies, this may be worth asking your gp about.

No idea how much letrozole helps with fighting BC ( scared to google!) , but also scared to stop taking it. As long as I can manage, I will take anything to stop this horrible disease coming back.

Sue xx

[rosie14]

Good morning ladies!
I have been taking Letrozole for 3 years and have been given at least 4 different brands in that time. I was told I must take it for,5 years and then it would be reviewed!
I get awful pains in my legs, can't sleep for longer than 3 hrs without disturbing then feel tired all day!
I have put on a stone since my cancer my hair falls out and nails are still not fully recovered!
I take my after breakfast and find as long as I eat regularly nausea isn't too bad!
Personally I would stop,it tomorrow but my husband insists I take it! I stopped it for 2 weeks when I had my DIEP 9 months ago.
Do we know how much it increases the survival rate? I was her2 pos grade 3.

[Patriciamay]

Hi all

i have been on letrozole for around 6 months.  Worse side effects are aching joints and night hot flushes.  Things that I think are making it easier are: taking at night time, bags of water (c2 -3 litres per day), and I exercise a lot.  I find on th days I haven't exercise I am definitely worse the day  after.  It's not bad enough for me to ask for a review, and I have also noticed that side effects seem to ebb and wane, so for the moment I am going to stick with it.  I would gladly try any tips people have. Xx

[Sue H-S]

Hi Elke,

when I took Letrozole (2 months, then 8 months) I always took it at night, when I went to bed.

Never experienced any nausea - wonder whether that was why?

Sue

[elke nicholson]

I have been on Letrozole for 2 years now, and my main problem is, as yours, the nausea, starting about 2 hours after taking it with breakfast. Also, terrible change of taste.

I too am wondering if I should take it at night but I am concerned that the nausea will make the nights even worse - disrupted sleep.  I only get about 5 hours sleep anyway and feel constantly worn out.

What do you think?  Did it affect you in the night?

Thanks a lot!!!

Elke

[Maziel]

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.

[Annie57]

Hi Sue

thanks for your suggestion which I have been trying - sadly side effects have continued to worsen and include nausea, joint pains, headache, low mood. All really miserable as my recovery from surgery had been going so well. Have now spoken to BCN and Oncologist who have suggested I come off hormone therapy and we will reviewonce radiotherapy has finished in August. Such a relief although it is going to take a few days for effects to leave my system. 

Thanks for information on this forum as I have been reading through it regularly now and find it so reassuring as this can be a lonely journey at times.

[Sue C]

Hi Annie

I experienced nausea when first on letrozole and found that its better to take it in the evening. Hope this helps xx

[Happyboobs2]

Hi Daisy.

Just wanted to say Hi!

Sorry to hear you feel rough....I can't improve on what all the ladies are saying in their responses.

I had a year on Cipla Letrozole ... 9 months on Actavis now 3 months on Accord.

I don't know whether it is down to time or what but I will stick with the Accord.

The chemist seem happy for me to choose.

I am stiff and achy when I get up in the morning( or in the night!)

also I have to take more breaks on car journeys as I get stiff and sore but a walk and a McFlurry helps!👍

Best wishes to all

xx

[Sue H-S]

Hi Annie57

Give yourself some time to heal! And remember the radiotherapy can also take it out of you, when you get there.

I was never nauseous on Letrozole, but then, even through chemo - I did better than most on that subject.

I started on the Teva brand and was given Activis for one month - after two weeks I went to the surgery and requested replacement with Teva. Activis certainly caused very low moods with me - and back on Teva all was fine.

Feeling heady and nauseous could be a sign of you simply being unwell - a call to your BC nurses might be helpful.

Hugs

Sue

[Annie57]

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.

[Sue C]

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

[Sue H-S]

Hi Daisy63

I am sorry to read that you are struggling. It's just not fair after all of what you have gone through.

I am now 8 months post the end of my active treatment and these are my observations...

Depression and anxiety can be caused by Letrozole, but may also be due to a delayed response of the trauma you have experienced because of your diagnosis and treatment.

I was absolutely fine during my treatment and the first 2 months after it - and then I fell off a cliff. I worked my way through it and have now come out of the other end. So counselling may be a good idea.

I had a delayed reaction on Letrozole in respect to my joints and am now on Tamoxifen. The hot flushes have increased a little again, but I hope they will settle down and I put on weight much more easily. Otherwise all is fine and I am finally feeling really well again. 

Physical AND mental recovery does take time!

It may be an idea to get in touch with your treatment team to perhaps shedule an appointment with the oncologist to review your medication? After all, your GP is not a specialist and only does what has been recommended by your treatment team.

I am seeing my oncologist on 26th July for another review of my medication and at a gues it will be the last time, apart from the annual check up. Everything has settled down and I am well. 

However, should something go amiss in the future - all I need to do is ring the BC nurse team and they will schedule an appointment for me.

Hopefully you have an equally supporting Breast Care Unit near you.

Hugs

Sue x 

[Daisy63]

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 

[Carolyn52]

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

[CCfvc017]

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!

[Carolyn52]

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

[Sue C]

Hi

Why not give it a try and see how you get on. It takes a little while to kick in, so I expect you won't get any problems for about 6 weeks. If you feel sick at all, take the pill in the evening. Admittedly, I do get joint stiffness, but for me it is bearable. There are supplements you can take to help ease this, like cod liver oil.

If you find you can't cope on letrozole, go back to your consultant, as there may be other things you can try 

Best wishes xx

[Rexandgloria]

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.

[rosarty]

Hi Sue. That's good to hear you are coping with Letrozole so far. And reassuring to hear we won't all just shrivel up on it!! I guess they were avoiding Tamoxifen because of your womb issue and risks of cancers of the womb with T. It's a minefield isn't it!

I was fine on Tamoxifen so there may always be an option of switching back to that.

I really wish you all the best news for your mammogram and hope they don't keep you waiting too long for the results xx

[rosarty]

Hi sueH-S. that is interesting to read your history. I too was diagnosed with lobular invasive positive nodes and highly oestrogen receptive ER8.  I had mx chemo and rads  2015/16 as the mass was quite advanced. Then put on TMoxifen as hadn't yet been through the menopause. Chemo certainly brought that forward though!

just a couple of months ago during routine screening ( they were very thorough) the MRI scan showed a suspicious area of calcification. Biopsies confirmed this as a 2.5cm area of DCIS. Have just had a second mastectomy and thankfully all removed with SNB clear. So good news and no further rads or chemo. Obviously my risk is now greatly reduced as no breast tissue left but my Onc has switched me from Tamoxifen to Letrozole as now menopausal to prevent any distant mastises. I think their thinking was because this area of DCIS was there even though on Tamoxifen.although they are not sure it could have been there before and shrunk and just not shown up on the previous scans. As my first cancer wasn't clear on the mammogram or ultrasound. It's a sneaky thing this lobular cancer! It was only my thorough oncologist who called me up for an MRI  and thankfully found it in time. 

I'm feeling very unsure about the Letrozole so it is good to hear everyone's experiences on this forum. 

Im hoping my mood will lift soon. Treating myself to some Reiki next week and a trip to London! And looking forward to getting back into my Yoga gently! Xx

[Sue C]

Hi rosarty

So far I haven't noticed any aging. Skin and hair all fine. Any side effects seem to be short lived. I don't know how long I will be on letrozole. Initially I was put on it ( and zoladex)  for a least a year because they were concerned about a mass in my womb, but this termed out to be fine. So whether this will change, I don't know. I get the feeling that as long as I can tolerate it, I will stay on it.

Having abit of a wobbly time at the moment, as first mammogram is next week. Be glad when this is done xx

[Sue H-S]

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 - http://www.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