glad I read this. I have been on anastrozole 3 years and complained of joint pain. Was given a month rest then put on letrozole. Oh my god been on it a month and I just want to lie down and die cannot take this pain any longer day and night. Constant headache shoulders hips knees feet hands. And I have a good pain threshold. Not taking it again 

Update my Doc took new blood test after I stopped taliking Letrozole. My liver enzymes had risen whilst on it, they went back to normal once I stopped taking it! . No more Letorzole for me, still have bone pain 

hi all I'm due to start letrizole soon advise of the oncologist I'm seriously dreading it after reading the reviews & posts about the side affects I already have osteoarthritis in most joints that Is deliberating  but I do self manage quite well with gentle excercise swimming   and Pilates that does help and pain relief I'm just thinking that this letrozole sounds evil and just might finally finish my quality of life I also work 30hrs and need to keep myself as good as possible I'm hoping to go back to work in the new year after whatever treatment I get has finished I'm hoping it's just radiation and tablets I won't know if chemo is on the menu until next week when the Oncotype has come back hopefully with a score in my favour  so I'm just thinking is this tablet going to make my joints and bones worse the oncologist did mention that I'd take a bone strengthening tablet along side of letrizole to stop bone thinning and that I'd be monitored for unwanted side effects .

marie x

All you can do is try it. I read all the side effects tales AFTER going on Letrozole and then realised why I was suffering so much. I'm much better on Aromasin but everyone is different. Don't suffer in silence though, speak out, keep a diary of aches etc to show your doctors.

Good luck.

sue

Hi, I'm new to this chat line...and find it very helpful in me making the decision to stop taking Letrozole...I was taking Tamoxifen for 2 years then 5 years Letrozole...the side effects for me is: weight gain, aches, fatique and hot sweats which often a lot during the day and night time.  I am going to try for 3 months and see how I get on.  I think quality of life is good and as long as I keep up with regulary exercise and a good healthy diet it may do the trick.  I am 61 and I think one gets to the time of ones life that enough is enough.  My husband has agreed with my decision.  2 years ago my Oncologist said to give it a try so I am now doing that.  I dont see anyone anymore which is great as I have been given the all clear.  I am a bit nervous about stopping but its all about QUALITY OF LIFE....

All the best to all the readers...regards Sue Fielder (Kent)

Thank you for replying to my aches and pains...its a good idea writing down how I am feeling. After reading lots of womans stories I;m not doing too badly but I just feel I want to give my body a break from it and to manage not taking Letrozole by following a good healthy diet.  I know the doctors will say to me its upto me.  I will be contacting my doctors to have have them advise me...or phone the McMillian nurses for advise.  They say Letrozole takes quite sometime to get out of your system.

Best wishes

Sue F

Hi Sue,

Welcome to the forum. I am sorry to hear about the problems that you are having with Letrozole. If you have already taken Tamoxifen for 2 years and Letrozole for 5 you have done pretty well. Initially we only had to take these for 5 years, but they are now advising people to take them for 10 in some cases.

I have had 2 bouts of breast cancer and took Tamoxifen for a year before changing to Letrozole for 6. I finished taking this in July 2017. I had a number of side-effects with both and still have some of the problems that they caused. Do chat with your consultant'oncologist befoere stopping altogether, as they may feel it better to give you one of the other drugs instead.

Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

I am 80 and have been on letrozole for five months during which I get nauseous nearly every day sometimes hot flushes but that’s about it I regret going on it but if it gets rid of the cancer it must be worthwhile

I'm sorry to hear that. I've not been taking it so long so may have more side-effects to come but so far the main thing i notice is my hair one side seems not to be growing thouh it hasn't fallen out. I think it is helping me, the lump feels less and I have my lumpectony next month. Not looking forward to back and fore for radiotherapy, not sure I'll have the strength! But if it does the trick... 

Hope your side-effect lesson soon. Could you try a different make?

Hi Judpet,

I am sorry to hear that you are feeling nauseous almost every day and sometimes have hot flushes. I have had these problems with both Tamoxifen and Letrozole. As I said to EveCarol above, there are several different hormone related medicines. Some people respond better to one more than the other. Have you tried taking Letrozole tablets from a different manufacturer? This can help too.

It is certainly worth talking to your consultant about this to see what can be done. I took Tamoxifen for 1 year, then changed to Letrozole. I stopped taking these after 6 years. That was in July 2017. My breast care nurse suggested something to help the night sweats. It didn't stop them, but they weren't as bad as they had been previously. My consultant prescribed a tablet to combat the nausea.

I agree that if it gets rid of the cancer it must be worthwhile, but there is no need to suffer when there are other medications out there.

I sincerely hope that you find something to help. Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thank you for your help wonder if you could tell me how soon after taking letrozole do you see a consultant and what to expect when your do do you have another scan or what

Some on here have said "if it gets rid of the cancer".  My understanding of these drugs (Letrozole, Anastrozole, Tamoxifen, etc) is that they are hormone therapy, ie., the opposite of HRT.  They suppress oestrogen (Tamoxifen lets a bit through to the bones/joints, hence why I'm feeling better on it), which in my case, fed the cancer.  They're also meant to bind up any stray cancer cells so that our own immune systems can deal with them.
I know some people are prescribed them to shrink a tumour before surgery too.  I would think most of us have been down the route of surgery, radiotherapy and/or chemo and then these hormone therapy drugs.  My understanding is the drugs don't get rid of the cancer, they inhibit ideal conditions for cancer to develop.

Judpet, if you've been put on Letrozole & don't know what happens next, I'd get in touch with your breast care nurse or consultant to find out.  I'm wondering if your age has made it more appropriate not to have other treatment, in which case, if you're suffering on Letrozole, you have to consider your quality of life & perhaps get moved onto something better or stop it altogether.  One thing I do know is, the side effects didn't improve with time, they got worse, in my case.

Some on here have said "if it gets rid of the cancer".  My understanding of these drugs (Letrozole, Anastrozole, Tamoxifen, etc) is that they are hormone therapy, ie., the opposite of HRT.  They suppress oestrogen (Tamoxifen lets a bit through to the bones/joints, hence why I'm feeling better on it), which in my case, fed the cancer.  They're also meant to bind up any stray cancer cells so that our own immune systems can deal with them.
I know some people are prescribed them to shrink a tumour before surgery too.  I would think most of us have been down the route of surgery, radiotherapy and/or chemo and then these hormone therapy drugs.  My understanding is the drugs don't get rid of the cancer, they inhibit ideal conditions for cancer to develop.

Judpet, if you've been put on Letrozole & don't know what happens next, I'd get in touch with your breast care nurse or consultant to find out.  I'm wondering if your age has made it more appropriate not to have other treatment, in which case, if you're suffering on Letrozole, you have to consider your quality of life & perhaps get moved onto something better or stop it altogether.  One thing I do know is, the side effects didn't improve with time, they got worse, in my case.

Hiya claireBr in your post dated 15 December you said the side effects from letrozole tablets didn’t improve with time they got.worse are you still having bad side effects now or have they got a bit easier for you and which side effects do you have 

I was on it for the first year then Consultant moved me onto Anastrozole & when I'd had enough of that after 3 yrs, kept coming off it, side effects that bad, was moved onto Tamoxifen & feeling a lot better on it, although different side effects which aren't as debilitating as the other drugs.

It was the joint aches & stiffness with both Letrozole & Anastrozole that made me a cripple after 4 yrs.  After about 4 months off them, on Tamoxifen, one morning I walked downstairs normally & suddenly realised the stiffness had gone.

If you're suffering ask to change.  I think the new one Exemestane seems better.

Just read your post how Letrozole is working for you.  Fantastic news.

I asked if I could change to a different one today but consultant said side effects on them all are very similar and seeing as letrozole was doing the job best not to change it