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
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
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...
Hi Corrina. I've just started on Letrozole 3 days into it. I'm finding myself a bit emotional and gloomy! Not sure if it's the tablets! I have felt quite positive all through the treatment and now feel a bit down. I guess it's bound to happen at some point! I find the Best thing is to get on with things you enjoy. Hopefully it's just an adjustment period. I'm sure your forgetfulness is something similar. It can be a symptom of menopause.
Lets hope it passes! X
Hi Sue again! Ive just picked up some of your previous postings (sorry new to this thread) and sounds like you had a very similar experience to me, I was diagnosed initially with 2-3 cm lobular cancer in right breast which didn't show clearly on mammogram and ultrasound and we all had a shock post surgery to be told the mass amounted to over 10cm! I am quite petite with dense breast tissue so mastectomy was inevitable anyway.
Positive lymph node so chemo and radiotherapy all done. Have just had second mastectomy after VERY thorough screening over the last year and after a couple of false alarms they finally found a small area of DCIS in my left breast after an MRI scan. Mastectomy recommended again because of my size and risk. Nodes all clear phew! So no further treatment. Feels better now it's all gone! So just Letrozole to get on with! Xx
Hi Sue. Thankyou for your feedback. I've been weighing up the pros and cons and decided as I'm in the 'at high risk group' I need to give it a go! I managed ok on Tamoxifen so fingers crossed! I guess I'm worried with it completely blocking oestrogen I'll suddenly age quickly! Hair thinning dry skin , mood swings etc etc. That's me being vain! However it probably can't be much worse than some of my friends who are going through menopause naturally and having a hard time!
i have the DEXA scan next week. I already take vit D and omega 3s and work at keeping to a healthy diet. I am dairy free though so may need the calcium supplements? Though I take calcium in lots of different foods.
Day 3 of tablets so I'm committed to it now and like you say may not feel much of a change for a few weeks.
let me know how you get on further down the line. How long have you been prescribed the Letrozole for? Ros xx
I've been on letrozole for 6 months and so far I can say it's manageable. I take cod liver oil and a calcium supplement. Had a bone density scan which came out normal and will be repeated in 2 years. I do feel achy at times and have minor hot flushes. Nothing that I can't cope with. Rather cope with this then have a return of BC.
Best of luck. You may not feel any different for about 6 weeks.
Hi. I am sat looking at my box of Letrozole Teva brand just collected from pharmacist! I have been switched from tamoxifen as now post menopausal ( double mastectomy, course of FEC and rads to right side)
i was then on tamoxifen for 15 months and had very few side effects. No weight gain ( I am careful with my diet) and hot flushes were more like warm moments so not bad at all.
Lost all my hair after chemo ( even with cold capping) but it has grown back thick healthy and curly. Worried about hair loss on letrozole but hoping a good diet will help with side effects. I've been taking vit d supplements and have my bone density scan next week.
Well ive decided I need to try the letrozole so wish me luck!!
It would be good to hear from any ladies who have had a positive experience with Letrozole!
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
Hi again Helzie,
My lymhnodes were completely clear - they removed 3 with the SNB. In my case the MRI did not show the size of the actual cancer. There were two reasons, firstly because I had quite dense breast tissue and secondly because I had a lobular invasive. That devil grows tentacle like strands from the centre of the cancer (20mm) which are often only a few cells wide - hence the MRI could not pick it up. Post op (mastectomy, chosen by me, as I was not large breasted/best decision I ever made) the report showed the whole thing being 110mm. That was quite a shock, as you may imagine. So chemo was a 'have to do' simply because of the size. My biggest surprise was the time it takes for me to recover from the chemo and radiotherapy.
Hope you are recovering well.
Ah! Fiinally I've met someone else like me!! Shortly after my (shock) diagnosis in late Sept, I was put on Letrozole in late October (like you I was ER+ 8/8) as a treatment and to shrink the mass pre WLE. I could feel it shrinking almost immediately and when I had the US in mid-January the mass had halved before my surgery in Feb!! I did inform them in Nov/Dec, including surgeon at the time of the noticeable shrinkage but they stuck to the original surgery time scale. In hindsight I should have been more insistent on an earlier op date or even requesting a US at the time but this was all very new to me then and I was on a steep learning curve! How were your lymph nodes following surgery? Mine revealed a micro and a macro (6mm!) infiltration out of the 5 which were removed. All others were clear.The med team were genuinely shocked at this. I should state nothing was detected on US or MRI in November! In addition all my scans then, CT and bone all came back clear-a great relief at the time. Of course this new revelation changed things and I felt I was back at square one again. Of course now I also had to have chemo, whereas before it was always going to be rads only, if even that.
I also see you'll be on Letrozole for `10 years. That's good since anything I''ve read suggests this is the optimum time frame, as opposed to 5 years.
yes, I was on Letrozole pre surgery. The reason was not to give the cancer anything to live on, whilst I was waiting for it. It was an ER+8, i.e. the highest of the scale they measure receptiveness on. My operation was just over 8 weeks post biopsy results.
Post chemotherapy I am now on it for the next 10 years. 6 months and counting, lol....
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.
This is a challenging question to answer. I went through the worst of my hot flushes, etc., whilst on chemo and shortly afterwards. Now 6 months on Letrozole they have nearly gone away. I still have about 4-6 a day, but they are just me getting warm, rather than breaking out in a sweat. Like you, I was on HRT, which I stoppen in January 16, when I started on Letrozole before my mastectomy in March. I guess it can take some time for the symptoms to set in - I started my chemo in May...and during the treatment months and shortly afterwards the menoppausal symptoms were at their worst.
Our bodies are just so individual.
It might be worth trying a different brand - I am on the Teva one, but it might not help. And you may also exerience other side effects. My joint pains and tiredness got much worse, when I, for one month, was on a different one.
BCC has published a really useful booklet with regard to menopausal symptoms and it might be worth to download it and have a thorough read
I hope it might help a little..
Yes you should but speak with your GP about it, You should also have had a baseline Dexa scan.
Beware that calcium supplements can interfere with other meds so you need to checkwhen best to take them . it doesn't interfere with letrozole.
Thanks for your reply. No, scan's never been mentioned. Only read about it recently. Will mention it to BCN on Wednesday.
Have you had a dexa bone scan to show up if you have any bone thinning? I had adcal prescribed after mine showed up slight thinning. My pharmacist is useless in terms of ordering a specific brand for me and the other chemist where I live is just the same.
I started taking it at end of October and apart from tiredness (which could also be put down to stress of condition) and very minor joint pain if sitting down for a while, I'm fine with it. No apparent hair loss. I did continue with the brand prescribed at the hospital (Accord) and told my local pharmacist to order same and keep some in stock! Wonder if I should be taking supplements to avoid osteoporosis, though?
I started with aching joints and bones especially wrists, shins and ankles after about six weeks and they wore off after about three months or so and I haven't had any problems since. I occasionally feel a bit sick in the morning if I take the tablet on an empty stomach if I have to rush out first thing bit otherwise I am fine. When the aches were at their worst I took paracetamol which eased them a lot. There is one brand which brings the aches back on, Activis, but all other brands are fine for me. Good luck with it. I think lots of people do take it without problems.
You probably won't have any side effects straight away, as it takes about 6 weeks to kick in. I'm getting some stiffness in joints after a couple of months, and now taking cod liver oil which is helping.
Hi, I just want to say that you will find posts on here of ladies with lots of different side effects from Letrozole and the other drugs but I have noticed lately that any side effects I have had seem to have settled down and I am not too bad at all.
I have been on it for 18 months .
I would be interested to hear if anyone else has found this to be the case.
I have aches and pains suddenly, where none have been before, but not in the joints yet, so was just wondering! Thanks for your input.
When do the side effects of Letrozole start. I have been taking them for just over a fortnight?
I am 58 years old with normal weight and I have been on Tamoxifen for about 18 months. The side effects knocked me a bit initially - with joint pains and weight gain. I gained about 4,5kg in 2 months. I tackled this by increasing my physical activity to 1 hour per day and removing all sugar and glucose from my diet. I have regained my normal wieght and I have managed to clear all my joint pains. I feel very well and my energy levels are good too. I am still slighty hot at night which seems to be related to how many coffees I have had during the day.. Wine also adds to the hot flushes and I have tried to cut down on my wine consumption.
I hope that this is helpful..
Also I've been told that it takes about 6 weeks to kick in, so you may not notice anything straight away. Then if you do experience anything, it peaks at about 3 months. So after that, it should settle and ( I'm hoping )doesn't get any worse.
Let you know whether that's true or not!
ive been on Letrozole for a month now and have felt a bit more tied with some aching joints but manageable generally. I take it at night now which is better as am less achy in the day. Do have fluctuations in temperature but again these are manageable. I think the side effects lessen as time goes on so I am hopeful. I keep thinking that it's keeping me safe while I wait for surgery so can put up with a bit of discomfort! Good luck. Emma xx
Hi Sue C and poppyj
Thanks for the words of encouragement. I know that it will help to keep the cancer away and am hoping that thinking about it is worse than actually taking them. I plan to start on Monday and will make a note of how I feel so that I can monitor the side effects and will then have something constructive to go back to the doctor or specialist. That's a great idea and one I probably wouldn't have thought of so my thanks.
Will keep you posted and try to be optimistic, not something I am naturally good at!
I've been on letrozole for about 3 months now and although there are side effects (for me mainly achy joints ) its not so bad. It's definitely manageable. Try and remember that its keeping that horrible c away xx
You may not have any, or all the side effects mentioned. Suggest you persevere with the Letrozole for a few months and if you do have symptoms mentioned on the leaflet, ask your specialist or GP to change you to a different brand as they do vary despite all being called Letozole. I would try keeping a daily diary and note down how you feel each day just to monitor how they are affecting you.
I had a lumpectomy at the end of December and went for my check up yesterday which went well. I now have Letrozole and have read the side effects leaflet and the posts on this site and I am now really anxious about taking them. I know they are meant to help but the side effects seems horrendous. Has anyone taken them and been ok? Could really do with hearing any positive comments
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.
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.
Hi Ann-m, thanks for answering, that is very useful. I am slim and don't want to gain any weigh if I can help it. X
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
After 7 weeks on letrozole ( and zoladex ), starting to get very achy joints and muscles. I knew this was coming, but what is the best way of dealing with it? I'd like to think that exercise would help, but after walking this afternoon, I feel worse! Any suggestions out there??
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.
Have only been on letrozole for 5 weeks but have been having stiff and sore neck too. Thought I'd slept funny!
Just a suggestion.....I also had a lot of migraines and considered beta blockers but wasn't keen. So my dr suggested aspirin. I take a small one(75mg) once a day and have done so for about a year and a half. In that time have only had 3 migraines, whereas before was getting on average once a month.
Hope this helps x
Hi I've been on letrozole from April ,I was on HRT for the menaporse plus anti depression tablets and beterblockers for migraine I've stop taking HRT ,, I'm 52 but feel 90, my body feels like I've been hit by a bus , all my joints hurt fingers swell ankles ache back ache hot flushes feel tiered all the time can't sleep at night now have really bad pains in my neck hurts to turn my head to the side very stiff and feel like my bones are cracking as well as vertigo witch it had before but it's a lot worse now I could go on and on just wondering if this is what everyone else feels