Letrozole

I've just started taking exemestane (an AI similar to letrozole) and my advice would be don't think about awful side effects you might get and just see what happens. You might not get any and you might get some mildly. I have sore joints that stiffen overnight or when I sit for too long. Within a few steps, they have loosened off and I'm fine so it is not bothering me. I'm on zoladex injections to suppress ovaries and I'm assuming that is far more of a shock to the system than switching off the remaining oestrogen I have. 

I also find that exercise keeps most side effects at bay. At the weekends, when I'm outside and active most of the day, I don't have any hot flushes. One thing I have learned from the zoladex, is that the intense hot flashes / night sweats I had at first have really calmed since I first started several months ago. The BCN said to me that most people find AIs settle within 6 months so they like you to give them that long before deciding whether to switch.

And that's the other thing - if you really don't get on with it, there are other ones out there.

Remember that if you are reading other people's experiences online, then people who are not suffering side effects don't tend to write about it, so you are getting a skewed view of how many people really do have severe reactions.

I was far more worried about hormone suppression than chemotherapy. I figured that chemo was only for a few months but hormone therapy is 5 years. I have honestly found that I am managing side effects fine and they are not nearly as bad as I thought they would be, and have significantly settled over the first few months.

If you haven't noticed anything so far then don't go looking for it :-)

Hi

As Beatthebreast says, the side effects you see are often because the ladies who mention them are experiencing them and looking for advice.  I too, was worried about the side effects of the tablets (I'm on Anastrozole) and even debated about taking them, thinking that I wanted quality of life rather than quantity. However, I decided to 'give them a go' and no side effects to worry about at all!  I'm nearly 4 years down the line of taking them now - and getting the stage of worrying about stopping taking them next year!!!

One thing that did happen when I was given a different brand about a year or so in, I had horrendous side effects - every bone in my body ached.  So, luckily I had some of my other brand left - switched back and they went.  I tested the theory again later by trying the 'new' brand and same thing happened.  The coatings of the tablets have different properties and looking at the 2 brands I was using they were markedly different.  So, if you get given a brand that gives you side effects, go to a different chemist/ ask for a different brand next time and just keep trying until you find the brand of Letrozole that suits you. 

Best wishes, Lesley

Hi Karen, I have been on letrozole and Adcal for 15 mths.  Like you I looked for the terrible side effects.  My knees are creaky but I stopped letrozole for 2 weeks on the advice of the BCN.  It made no difference I think I have a bit of arthritis. I seem to be slightly warmer than everyone else with the odd flush in bed. Otherwise I'm good.  I agree with other  comments people only tend to write on here if they are having problems.  The vast majority manage well.   Lots of luck x