I have just come off letrozole after 10 years i had an xray on both hips last friday and both give way all the time i have been in agony since day 3 of taking these poisons first arimidex 9 months then exemerstane for 18 months then letrozole since ive not slept since taking them got a trigger finger brought on with letrozole nlood pressure higher and cholestral teeth suffered and hyperparathyroidism i am also now pre diabetic carried on as was scared of the cancer coming back but its ruined my body
I have been taking a year now ...bad head and joints at beginning ...then better but recently joints awful mornings particularly hands but better as day progresses
I don't really want to come off as best for my diagnosis.......and do worry for when stop taking in 5 years
I concur with Marla13, I'm post menopausal and have been taking letrozole 18 months. I did have some aches for about 3 weeks about 12 months in, my doctor suggested I was possibly fighting an infection at that time, which makes sense. My holistic GP has me on a high dose magnesium supplement, and no aches. Celery juice every morning on an empty stomach acts as an inflammatory, as does cutting down on dairy and red meat.
My biggest fear with letrozole is coming off them eventually. My doctor reckons I don't have to stop after 5 years, but it's recommended. I agree I will need to stop taking the letrzole, but does anyone else fear the oestrogen return?
I'd like to echo Dawn's report of her Letrozole experience; it will be two years next month, that I've been on Letrozole, and not only do I not notice any difference between brands (I don't think I do anyways)! aside from fatigue, irritability, & some stiffness in my legs/hips (mild-moderate)...I'm doing quite well:). I'm also on Thyroxine for my thyroid and am mindful that my low energy levels are partly due to my thyroid problem.
Dawn-you pose an interesting Q. re-women who were already menopausal. I was definitely post menopausal before starting Letrozole & I actually assumed that we would experience the menopausal symptoms far worse, given that Letrozole actually zaps *all* estrogen from our bodies whereas according to the science, women who are menopausal still have *some* estrogen circulating in their bodies. But your theory makes sense to me...maybe because or bodies were already lacking estrogen, the decrease in estrogen levels wasn't such a shock to the system. The one Q. my oncologist asks me each time I see her is "are you having hot flashes" & I always say no-in hindsight I probably get a hot flash once in a while, but not as often as when I was going through the menopause-if that makes sense. I experienced them more like *waves*...a real *whoosh* (lasting seconds) but *severe*...and then they dissipated.
But on the whole, Letrozole has been more than tolerable for me-I think we just learn to live with the SE.
So, Letozole gets a thumbs up from me:).
Personally I would try Femara if you can get it. I had a hellish 3 years on Tamoxifen pre menopause and then it worsened after oovectomy which forced sudden menopause. I then couldn’t tolerate it. My sister couldn’t tolerate it at all, and my friend has just stopped taking it. I’m having way less problems with Letrozole. Tamoxifen often causes worse side effects.
Have only been taking Letrozole for around 5 weeks. Dexa scan booked and will see how it all progresses. Hope you are keeping well.
Hi, I had already gone through the menopause when i started taking letrozole in april this year. I was so worried about taking it because i had heard of all these awful potential side effects, and was nearly put off taking it because of all i had read. I decided to try it anyway, as my consultant said most people tolerate it with little or no side effects.
I did look at all the brands ingredients first, as some people said they had less side effects with some brands, and decided to go with the Accord brand, as it was the nearest match to the original Femara Brand ingredient wise. I did this, as I knew i would not get prescribed Femara, as its so expensive, but was the original brand that people said they tolerated better. If you want a specific brand, you have to have it written on your prescription to make sure you get dispensed that brand.
I have to say, other than occasional nausea in the beginning, I havent really noticed any awful side effects that have affected my daily life. My hair may be a bit drier, and a bit more vaginal dryness, but i get YES VM vaginal moisturiser to help with that.
The thing is to try it, and see how you go. Some people may get more side effects than others, so don't be put off taking it.
I have wondered whether women that have already gone through the menopause, and already have low estrogen in the body, are less effected by an estrogen blocker?
I have been told to take letrozol. What I want to know is have you gone through menapuse already before taking letrozol or did it put you into menapuse?
My oncologist is also recommending Zometra, for the same reasons. Seh said only about 6% of people get the "flu-type" syndrome after the injections, but it only last a few days even if you do get it, so to me, it seems worth it because a) it works better, b) has no ongoing nausea issues, and c) is protective against bone metastases. But I haven't taken it yet, so I guess I'll find out.
Been on Letrozole about 12 months since BC. And mastectomy.
It is raising my blood sugar..Type 2 diabetes.
Have to be on it for 5 to 10 years ..if I live that long ..Im 73yrs now.
Wondering if it is happening to anyone else..thankyou..
I'm just about to start on letrozole (many thanks to those who have posted regarding best/worst generics!), but my oncologist is recommending Zoledonic Acid (Zometra) infusions for bone strengthening, instead of any of the bisphosphonate pills. No stomach-related side effects because it is infused. Other benefits are it blocks bone metastases somewhat, and has some cardioprotective effects as well. A bit of nuisance, but usually done only every 6 or 12 months for this purpose (more often for bone cancer), and they say to make sure it is infused slower (at least 15 minutes) to avoid/lessen aftereffects. So that's what I'm going to try, since I already have osteopenia in one hip...
Take the Femara! It’s supposed to be excellent. It’s not just the drug that causes SEs, it’s the blooming additives . If your GP has prescribed it then you can have it. X
Hi Lady Baguette
I similar age to you 69 and similar journey
Just wondering how and which side effects the cbd helps and which brand and strength you take?
Hi thanks for replying. I am so confused now. The oncologist phoned me and said I couldn't have the femera because it costs£90 a month but because I didn't tolerate the letrozole he would ask the doctor to prescribe tamoxifen. The pharmacist then phoned to say they can dispense the femera because the doctor has agreed it. Really not sure what to do now
I start my radiotherapy next week having waited for three months from surgery the doctor said to wait until I have finished radiotherapy to start the tablets but the oncologist said no to start them as soon as possible.
It is very difficult to know what to do with so much conflicting advise. My breast cancer was early stage no spread to the lymph nodes and 16mm so stage one
It is however the second primary breast cancer having had dcis 20 years ago and had a mastectomy with reconstruction but it was in that side and this time it is lobular carcinoma grade 2 eastrogen receptive 8 so thinking I would be wise to take some form of hormone treatment
So difficult to make decisions with all the conflicting advise
Hi Jolow, what rubbish your pharmacy is talking. Your GP has okd it, and it’s coming out of their budget, so you can have it. Contact your GP immediately to report it, and change your pharmacist. Well done for getting the Femara okd. I’m on Teva brand and it’s fine for me, and Accord is too. The Cipla brand should be called the crippler brand as far as I’m concerned. Good luck. 🍀
Hi I am also on letrozole I was given the sun brand the side effects were terrible. I spoke to my doctor who gave me a prescription stating the femera brand. The pharmacy called me to say they have been able to order it but are not allowed to dispense it because it is too expensive. I am very confused so at the moment I am not taking them. It seems to me you have to have whatever is cheapest.
Hi, I’ve been on Letrozole since March 2017. I was fine until I went back to my job as a night carer in a residential home. I am really struggling with flushes and knee pain and find it difficult to sleep even on my night off. I work 3 nights a week and I want to drop to 2, but I’m worried they may terminate my employment.
Hi Marvin and all Letrozole sufferers!
Your post about aching legs struck a chord with me. I have been on Letrozole since January, so 7 months now, and also have 4 weekly Zolodex injections to switch off the ovaries, so the oestrogen depletion is coming at me both ways, when I am bad I suffer with horrendous headaches where I’m convinced I’m going to be sick too, aching calves and ankles, very low mood, and often aching back. I also have the hot flushes but I try to ignore that because at 52 I’d be getting those anyway. However what I HAVE noticed by keeping a diary is that there is a cycle to this ( for me anyway) just like back in the pmt days! I have found that about 4-5 days before my next Zolodex injection I am at my worst. It’s so hard to stay positive on the bad days isn’t it? Like I know if my joints are stiff the best thing is to stretch them.......but when you feel so low getting the enthusiasm for a yoga session is no mean feat 😫 Has anyone else noticed a cycle where you get a few OK weeks?
My brand is different this time and I don’t think suits me, it’s Accord. Up to now I’ve been on Sunpharma which on the OK weeks has suited me. Good luck ladies......I’m just going to tuck under my duvet again for a bit xx
Thank you for answering me. I’m sorry you are having pain too. Have you had any back pain. I’m new to these forums and don’t feel I can speak to anybody about it because I sound like a broken down moanx
Yes I am having heaviness and pains in my lower legs, with very painful knees and also swelling around the ankles into my feet. I wasn't sure whether these symptoms were related to the blood pressure medicine I have been taking....
I started taking letrozole in October 2018, but was told by BC consultant to stop after 2 weeks, until after my RT finished at the end of December. I started again straight away, but by April, I was a complete mess. I was crying all the time for no apparent reason, my joints were aching, and my blood pressure (which had been controlled before), was through the roof.
My BC told me to take a "letrozole holiday" for 6 weeks while my GP sorted my BP. My symptoms immediately disappeared, and my BP started to reduce with the new medication to control it. Starting the letrozole again was ok to begin with, but after 4 weeks the joint pains were back, worse than ever, my feet and ankles are so swollen that by the afternoon I have problems with shoes, and I am kept awake at night with the lower leg and joint pains.
It does seem better if I am out and about and very active, but tiredness makes that impossible to do every day, unless I want to be in bed by 8.30pm!
Most weeks I try to swim once and do Tai Chi (this at the local Maggie's centre), and on those days I do feel a bit better for a while.
I don't know whether the swelling of the ankles/feet and shin pain is related to the letrozole or the amlodipine I now take for blood pressure, but whichever it is, it really is affecting my mood.
I often feel as though I'm ancient rather than (a previously fit) 60, but having read about the other options, I think letrozole is possibly the best option for now.
I hope your legs improve.x
Hi I am new to forum. Yes have been on letrozole for nearly three years. My symptoms are really annoying. I have headaches, bone and muscle pain. My lower back is painful at times. My legs feel really sore and heavy,and my feet and lower legs are burning and tingling. My hands have also started burning. The heat in my body makes it ache a lot. I am afraid to stop taking it because I had a lump and lymph nodes removed which 7were affected but 12were clear. Does anyone have any of these symptoms especially the pains and heaviness in the legs. I would be grateful to know. I feel sorry for,anyone going through these effects. I feel I have aged with it.
I've been on letrozole (accord brand) since end of Jan this year (almost six months) to shrink two tumours so I can have a lumpectomy instead of a mastectomy. I haven't had any side effects which is a big relief. (Surgery this month).
My GP sorted out a DEXA scan for bone density for me as the consultant wasn't in a rush to do it. The scan showed a mild osteoporosis which would have been there before I started the letrozole. I was a bit upset as I wasn't as healthy as I thought (breast cancer aside). So now am on drug for that plus vitamin d/calcium tablets, as the letrozole can make you lose bone density after about a year I think.
Hope you are doing okay with the letrozole.
Hi Ali, very sorry to hear you are in pain and struggling. I’ve been on Letrozole now for two years and I’m doing ok. I have changed brands until I got one with fewer side effects. I have had to be pro active in combatting side effects, and I’m really glad I’m retired and can just listen to my body . I do rest when fatigue hits, and I’ve had a little holiday from my meds when my joints were really bad, but that was at the beginning. I do TaiChi every week, which exercises every joint, and also includes meditation which helps with sleep patterns. I use Epsom salts in my bath to ease my joints, although I sometimes need hubby to haul me out! 😬. I swim three times a week....very very slowly.....but it has helped with hot flushes and my lymphodaema . Twice a week I try to do 30 minutes gym stuff....again very gently. I stay off sugars , including white wine, as that seems to spike my temp and increase joint pains. I’m also careful re foods with chemicals which can upset this rather delicate body I appear to have been left with. I rely on recipes from the Royal Marsden and Maggies as they give tons of info on what to eat, when and why. A good nights sleep always makes my day better. I do take my tablet at night so that side effects can be slept though.....sort of! I know what you mean about the joints on the side where the treatment was as I’m the same. The swimming and walking has helped , although at first I kept swimming into the side, and walking off the treadmill! Good job we can still laugh at stuff. I do hope that you are having a phased return to school. As a retired teacher I know how energetic the job is, and you need to be on top form to in control of a class. I hope I haven’t overloaded you, but I would like to help you continue with your meds if you can. All the best. X
Sorry if this as been mentioned but has anyone had side effects with eating ie last night went for Thai couldn't taste noodles and just spice from the curry my taste buds vary day to day cause day before u had salmon could taste that
The whole purpose of this forum is to work for people who are experiencing problems. I am sure there are thousands of other people out there who are not having problems or who do not feel driven to seek support.
Stay positive but rest assured that this is a supportive forum for when you have doubts.
Letrozole is a long term treatment. Keep going and keep aware. All the best.
Started on leprozol yesterday!
Not feeling optimistic having read everyone's comments but hoping for some good news 😄
Is is there anyone out there who has managed to take this without horrible side effects?
So sorry to hear you've got secondaries in your lungs, but really pleased for you that your side effects re-Letrozole are more manageable & you are now ready to swim and gym:). As you said, onwards and upwards...your outlook and attitude will do you the world of good!
Sending lots of love....
Hi ladies, I have secondaries in my lungs, so I’ll take the Letrozole plus Palbociclib until it stops working. After trial and error with sweats and heat surges I now take my Letrozole at night before I go to bed. I can manage the menopausal type stuff better, rather than during the day. I also changed brands three times, and the Teva works great for me. A bit of a warm flush that is soon gone with my glass of water. I used to keep a small hand towel by the bed as the sweats were unbearable on the first prescription. I also bought a chill pillow which is magic. Some stiffness and joint pain, but all manageable especially as I am now fit enough to swim and gym. So much easier. I’m afraid it is two and a half years since I was first diagnosed and it hasn’t been an easy journey. Old age is an added factor as I’m 72. Onwards and upwards, ladies. Lots of success stories here. 🍀 x
thank you for your reply its good to know from people how are on it not just the reading material you get bombarded with
I would echo what Christine said 100%. We are all different and what works for, or suits one woman may not work for or suit another. I am doing fine on Letrozole...no major side effects (the ones I have are tolerable) but other women feel dreadful on it. I didn't have the choice-I was post menopausal and my surgeon said the evidence for Letrozole's effectiveness is stronger than for Tamoxifen so I went with the evidence. It is working in that my cancer is shrinking (pre-surgery) and I'm very happy:). It really is a personal choice and may be worth deciding on one, trialling it, and just seeing how you get on. I am presuming you can always change meds if the first one doesn't suit.
Good luck with your decision but try not to worry about it too much....just gather enough information to help you make an informed decision:).
I have had a double mastectomy with no cancer in the Lymph nodes and was pre menopause. I can't take Tamoxifen due to a reaction to another drug so I have to have zoladex as well as letrozole. I am not sure what my risks are but the oncologist insisted i take it.
The side effects vary on the person as you can probably see on here. My experience was that when I took tamoxifen 20 years ago the side effects for me were minimal but it didn't work for me as I had a second cancer less than 2 years later ER+ again. For me the Letrozole has more side effects. I have a lot of aches and pains which do make me think I will not do the full 5 years. I also have skin problems and bladder problems with constipation too.
Every one is different and you do not know in advance which side effects you will get. It may be you try one and see how it goes. If you have the option of either then you can always change.
I am new to all this, I have just had a single mastectomy which has gone well, I have been advised to take either Latrozole or Tamoxifen . I am 2% ER positive . 61 and post menopausal .
I have been told it is completely up to me.
Having read about both and there side effects I am both confused and very concerned with the pros and cons.
I have no further evidence of anything else there and no lymph nodes where effected.
I would love to hear from anyone who is either in the same quandary or taking either.
I'm having to have a Masectomy as I have COPD respiratory condition. I'm taking g Letrozole while waiting - I didnt know I could go without Chemo ? And maybe just stay on the hormone therapy.
Dear Lady Baguaette
Thank you for sharing your experiences. For me the genuine Femara was giving me a backache, which promptly subsided as soon as I went onto the generic, called Laradex. Femara also made me sweat so much more than the generic Letrazole. The only problem I have with the generic is nausea, followed by a massive sweat attack. That is getting less though.
I am 65 and also self-employed, running my company. As soon as there is a lot of stress like when I had to go on an overseas business trip, the symptoms were quite strong. When I can take it easy and I have a routine my body settles again.
I was also on HRT for about 12 years and I had a great time. When I was diagnosed I immediately opted for a double mastectomy followed by the hormone therapy. I don't want to subject my body to the harmful radiotherapy or the toxicity of chemotherapy. I am now completely in remission and very happy about that. Hopefully I will not have to go through 5 years, but only 2 years or even less.
My son wants me to take the Cannabis oil, but I am not that way inclined. I am not a gym person, just keep active walking and doing things for myself and being independent.
I wish you all the very best for your business and for your treatment programme.
I'm sorry to hear about your nausea. I'm not a doctor so can't say for certain if your nausea is a result of the change in brand, but I do hope you do get used to the new brand, and start to feel better, and if not, it may be worth asking your doctor/chemist if you can switch back to the Novartis brand just as an experiment-to see if the nausea dissipates.
I'm really pleased to hear you are in complete remission-that's wonderful news!
I have not been on this forum for a while.
I changed to the generic brand about 2 months ago - I was on the Novartis brand for 4 months.
There was quite an improvement in my overall condition - less sweating and no back pain!
However, I am getting nausea. I eat very selectively - wholewheat bread and cereals, no red meat at all, no sugar, no chocolate, a little chicken and fish. Potatoes, rice and pasta are ok, and most vegetables. Fruit with high sugar content needs to be avoided. As I eat small portions now I lost about 3 kg so far.
I think changing the brand has been good.
Hopefully the body will get used to the medication.
I want to get off this hormone after 2 years. I already had a bilateral mastectomy, and am fully in remission. Oncologist says the treat is only prophylactic. Glad to hear that Letrozole is so effective in shrinking the tumor. So it should be Ok for me to stop with the therapy after 2 years or even sooner!
Best wishes for your treatment, when it is coming up.
So good to hear from you! Yes, I think it's so easy to assume it's the change of brand but I'm honestly not convinced:).
I had MR last week and results this past Friday-I'm really pleased that my cancer continues to shrink so we're doing another MR in 3 months and just waiting to see how much more it will shrink-it is looking more likely that I will be able to have lumpectomy (at least to try and remove it all) and if that fails...then mastectomy.
But for now-just the Letrozole since it's doing it's job.
Hi Marla - good to hear from you. I found my hot flushes/night sweats seemed worse just lately - I was blaming the new brand of letrozole (but don't know how much of it is in my mind😜). I've just got my repeat prescription and when I picked it up it's back to the accord brand - so will see if makes any difference. I'll let you know.
How's everything else with you? Hope it's still all going to plan for you. take care. xxx
Lady B.....just one Q. about the CBD oil-any unpleasant side effects? I'm only asking because somebody recommended CBD for me, to help me sleep-my sleep is not great (hasn't been for years) but I don't like the idea of taking something cannabis related (I'm a real prude when it comes to street drugs:). Please would you enlighten me when you have a chance, as to how you are finding the CBD oil...thanks!
Hi Lady Baguette-my apologies for the late reply-I don't check this forum often enough. It sounds like we have had similar journeys, and wow-your attitude is wonderfully positive! I'm also so pleased to hear you are a candidate for op then radio. It's amazing how quickly a mastectomy is recommended when actually, for some of us, it isn't *necessary*.
I admire your strength, your determination, your exercise regime, etc. etc. And long may it continue!
From one self-employed woman to another....bravo!
I hope you are doing well? Lo and behold-when I got my repeat prescription of Letrozole a week ago it was Sun Pharma. So far, so good though-in other words-no significant differences noted.
Hey maria 13
Just read your post and couldn't agree more. I started on Letrozole 4 months ago, I also like you haven't been on the message board recently as I have been coping. Suppose I ought to have done really to support others when I had so much help at the beginning.
I am 67 and had been going to the gym again for a year before I found out I had breast cancer. After being told at my local hospital mastectomy and nothing else I got a second opinion from my now lovely consultant who said I had choices for grade 2 no lymph involvement lobular BC long story.
I am now on Letrozole for a few months then op and radio. My first letrozole was cipla Jesus was horrendous came on here and read so many horror stories immediately went to docs for accord which was better
Then did a lot of research and it's not the letrozole it's what they wrap round it that causes all the side effects, so i persuaded my health insurance to fund me for the genuine Femara wow what a difference the main side effects I found with the generic one are joint pain and hot flushes and mood change, which are massively reduced with the genuine Femara.
I have also found that sometimes I can go to the gym and joints ache a lot and when I come out they have literally gone. Even though my age i can keep up with most of the youngsters at the gym apart for the extremely fir ones i have always been very active. I can only recommend exercise for the side effects
I haven't changed my life dramatically but I now take quite a few supplements have acupuncture, see a homoeopathist and most importantly take cbd oil. This drug Letrozole will save my life hopefully, so no way I am going to stop taking it, but neither am I going to sit down and take SIDE EFFECTS without trying to combat them, which at the moment seems to be working. I was on HRT for 12 years and now I call cbd oil my new HRT.
I am not going to sit down and die with this disease I am self-employed and work about 80 hours a week as most self-employed persons do and don't contemplate giving up any time soon in any respect of either work or this dreadful illness
Onwards and upwards
It's great to hear you are doing well and yes, it seems to always be a waiting game of one kind of another. Good luck on 8th May...here's hoping you get to have your tissue expander exchanged with a permanent silicone implant soon and I have no doubt it *will* be before Brexit:). That, I'd be willing to make a £££ bet on:).
Sending lots of love...and hope you have a lovely Easter.
I haven't posted for some time so it was good to hear from you. My bone scan was reinstated
but the hospital phoned the day before to say it was cancelled as they reviewed my CT scan and
decided it showed multiple bony mets in my hip so no need for it. I saw my surgeon in November and he thought the Letrozole was "working" as I showed no symptoms of mets.
I had my 12 month mammogram last Tuesday and am hoping to become a neddy in the paddock as I still feel ok. Due to see Oncologist in May.
I believe that osteo-arthritis can be mistaken for cancer and wonder if any of the ladies have come across this before.
Maybe I will get that bone scan after all, so your messaage has been very supportive.
I hope you are doing well also.and your scan was ok.
Hi Mumbakes - thanks for this - I'm glad someone else has had this particular brand and been OK with it. fingers crossed I will be OK as well.🤞
Hi Marla - great to hear from you. I'm doing quite well. Still waiting on a date to have the tissue expander exchanged with a permanent silicone implant. No date yet - it was supposed to be this month - but like brexit it's been delayed.🤣
I have a date for a pre-op assessment on 8th May so that I'm 'ready to go' when a slot on the surgeons list becomes available. It's another waiting game - that's all I seem to have been doing since last July - waiting on various tests or procedures. Keep in touch.
I have been taking Letrozole for 3 1/2 months now. The first box from the hospital were Accord. I had back ache for a week or so but then my body adjusted. But then the next lot from my chemist were also Sun-Pharma. Like you I was really nervous about all the side effects and seems like a lot of ladies on here have really suffered with differing brands. But all I can say is, for me, Sun Pharma have been absolutely fine. I’m having some menopausal symptoms to be expected as am also having Zolodex injections, so the oestrogen removal/blocking is coming at me both ways! So, some vaginal dryness, hot flushes but all in all I seem to have avoided some of the horrendous side effects that others have to put up with.
Having said this, I have just registered with Pharmacy2you so don’t know what I will get next month......fingers crossed.
Good luck xx
I’m out and about so this will be brief but just to say I wouldn’t worry too much about brand changes. I’ve not heard of sun pharma but have been on at least one other brand other than Accord and really no difference.
I hope ur well otherwise?
Hi Marla - really glad to hear the Letrozole is working to shrink the cancer.👍
I've just popped on here because I've only ever been prescribed the accord brand of Letrozole and I seemed to be doing OK with it, just fot my latest repeat prescription and i've been given a brand called 'Sun pharma' - I've never heard of this and I'm really worried its going to mess me up.😪
Has anyone else ever heard of this brand?
I'm so pleased to hear that you are cancer-free. That's wonderful news. I hear you loud and clear re-the effects of radiotherapy. For me, it's mor about *choice*. I may well choose mastectomy in the end but I want to do so a) knowing I did all I could to shrink the cancer and b) that it was *my* choice rather than being told by a doctor. I didn't realise how powerful Letrozole was until hearing from a woman on the MacMillan forum who's cancer shrunk by 50% from Letrozole.
I'm "Miss Optimistic" at the moment....only time will tell.
I hope your sweats get better. I'm bracing myself for another hot Summer and sleeping with icepacks...it's my norm...I'm always warm in bed and I don't tolerate the Summers particularly well:).