I am interested in hearing if anyone has had advice on taking Letrozole just on alternate days. I have (reluctantly) began taking it, finished radiotherapy post lumpectomy about a month ago, I am on a load of heart medication and in the past year I can feel the beginnings of arthritis in my wrists so am prone to joint pain already. I have read a lot about the side effects of letrozole and I am depressed and scared just thinking about it- I have a lot of personal problems to deal with at present and am terrified about the possibility of more physical ones being added to the mix. Any advice woul be appreciated- thanks!

Hello Mary EI

well I am currently taking Letrozole every other day. Only been doing this for 3 weeks so it's early days. Just started having back pain today which (I think) is the Letrozole given I have never suffered with my back in my life before. I also think I am a bit 'flat' but can't say I am low mood. 
 

So it's early days. I AM sleeping better though so that's odd!! Not sure I will keep the regime up. The protective factor is tiny (as it seems to be for everyone?! About 1.5% apparently)

I was supposed to have started taking them in March but just couldn't bear the thought of it. I think I got  a bit scared though and suddenly wanted to try the hormones.  I may stop them if my back isn't better within the week. I find it hard to give up my good health for the sake of a minute benefit. It doesn't inspire me anyway. 
 

Please let me know how you go.

All the best,

Kebbs. 

Hi Kebbs!

Thanks for your reply! I was the same, I postponed taking Letrozole because of what I had heard about it’s bad effects on the body and quality of life. Can I ask what you meant when you said the protective result is 1.5%? I suppose fear got the better of me and I have a friend who has had no problem with it so I gave in, it’s only been a few days and I don’t know if it’s a coincidence but I have pains in my shoulders which weren’t there before ! Anyway I will keep an eye on things and post the outcome here - good luck !

maryEl

Hi Mary EI,

Good to hear from you! 
 

Yes the 1.5% is the size of the protective factor the hormones will give me from a breast cancer recurrence. The oncologist told me this at my review after radiotherapy had been completed.
 

Most people have a very small benefit within the same region as mine  from taking hormone tablets. Obviously some people will have a greater protection than 1.5% but most people on this site seem to hover between 1% and 2.5%. It's a difficult decision when they cause so many people so much grief for such a small margin. I guess though it IS a bit like 'insurance'. Not many people actually need it but it's so important when you do!!!! 
 

Anyway I am going to keep going with it for another 3 weeks. IF my back is worse or if I feel I am getting low mood I will stop and take my chances. It's a bit scary but quality of life is so important too. 
 

Take care and please keep me posted on your thoughts with this!!

Best wishes,

Kebbs x x 

Hi I have been taking letrozole for 2.5 years now following breast cancer. . I have lots of other health issues too apart from the cancer diagnosis . I had a lumpectomy, radiotherapy, Herceptin and then started taking anastrozole . This drug made me have terrible hot flashes and every joint possible ached - even those in my fingers . I spoke to my oncologist who switched me to letrozole . My aches and pains disappeared but I suffer terrible hot flashes still . They absolutely drive me mad and in the middle of one I would gladly never take them again BUT for myself the fear of cancer returning is far worse . I do feel low sometimes and have gained so weight but if it stops that vile cancer returning then I'm prepared to carry on . Of course everyone's situation us very different and I just hope you can come to a decision of your own . Lots of luck to you - I know how difficult it is x

Hi Saffie,

yes I completely take your point about the 'fear factor' of cancer returning. I guess it haunts nearly everyone once diagnosed. 
 

It is a very personal decision and one that's not easily arrived at. I have big respect for people  like you who can 'manage' the side affects as well as you are doing. I know it can't be easy. 
 

Its interesting your aches and pains disappeared after starting Letrozole. Do hope the sweats calm down at some point too. It must get you down. 
 

I guess one of the things I haven't mentioned before is the damage to my bones. I have osteoporosis and Letrozole eats bone!!! So the outlook re. that isn't the best either!! However I had an infusion in early April to protect my bones so hoping that will help me. I think a dexa bone scan is a must before starting hormone treatment. 
 

Please take care. Good luck with everything. 
 

Kebbs x x 

Hi Kebbs,

Thanks for that explanation! It seems a high price to pay for such a small protection factor. Anyway, I will see the consultant in September and I’ll make a decision then depending on how it goes with the drug over the next few weeks. For now I’ll just try and take care of myself and enjoy this summer- I’ll keep updating here-strange times indeed!

Take care - Mary 

Yes I will look out for your updates Mary. 
Enjoy the sunshine!! 
Kebbs x