Hello,

Reading all your posts has made me feel so reassured. I had a lumpectomy and radiotherapy in Jan-Apr 2017. I've been taking Letrozole since then and have been so achy - souls of my feet when I get out of bed, looks like I'm getting arthritis, weight gain, hot flushes, the whole shabang! My doctor told me that it's really important to exercise, which I did at first but I'm now so lethargic, tired and achy that it's tricky. Any advice gratefully received! 
 

A x

Change onto some other drug.

Most definitely change to another drug! If you read everything on here about letrozole you will see that nothing you do, exercise etc, will make a difference. Your GP can't change it, he can only write to your consultant for him or her to change it. Contact your consultant secretary and ask to be changed. He may want to see you, or even phone you if he's good, but he can then issue a new prescription and write to your GP for repeat prescription.

there are alternatives, Anastrozole, tamoxifen, and a newer one EXEMESTANE also called Aromasin. I'm on Aromasin with few side effects after trying all of the above.

Remember you are going to be on this drug for 5 years, and then they ask you to do another five years! It's a long time to feel so old and achy, it's your life. You have survived cancer and now you deserve to be able to live a better life. Stand your ground, they will help you find alternatives if you push.  Good luck. 

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 could have written this post, suferrubg on Letrozole for 3 months. See specialist team in Jan 2. I previously had Anissstrizole but stopped it due to severe side effects and the breast specialist nurse was very rude to me and I avoided contacted them however I have now written a lengthy letter and given an appointment for Jan 2. It is not good when you are made to feel bad because you stop something that's caused such problems, Carol 

Hi EveCarol,

Welcome to the forum.

I am so sorry to hear that you are suffering with Letrozole too. I agree that it is totally wrong for nurses to be so rude to you just because you stopped taking Anastrole. I had similar problems when I refused radiotherapy. I eventually moved to another hospital and what a difference. You really do need to be able to trust in your care team implicitly.

If you are now having problems with Letrozole, there are other medications that you could take. Have a word with your oncologist if you can. If not, phone your breast care nurse, explain your problem and ask her for advice.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx