side effects of letrozole

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I'm looking for some advice on dealing with letrozole side effects.  I was diagnosed with breast cancer last october and have been really lucky.  Surgery in December, given the all clear and 5 days radiotherapy in March.  I'm a really active person,  I came out of an abusive marriage nearly 2 years, ago, ex-husband convicted last month so I almost didn't appreciate that I had cancer and certainly didn't pay any attention to all the rest type advice.  I've been given letrozole for 5 years and I think this is the first time the magnitude of the situation has hit me.  I'm into the 3rd month of taking the letrozole, I ache all over and struggle getting in and out of cars and turning over in bed.  I'm still trying to run 5 times a week and walk if I can't run.  I've cut sugar and processed food out of my diet.  Still appear to be gaining a lb and month and the running is getting harder and harder.  Exercise and staying on top of my weight has been my survival mechanism for many years so accepting slowing down and gaining a bit of weight doesn't feel like an option.

Has anyone any experience of managing to stop the weight gain?  And does the aching bones plateau at any time? 

I've been trying to work out the risk of just not taking them because 5 years seems unthinkable but it would be good to know if there was light at the end of the tunnel.

  • Hi I was initially on letrozole. Weight gain was immediate, 1-2 stone in the first couple of months. Stiff joints etc. After 6 months I changed to exemestane. Weight gain initially stopped but I never lost the weight despite efforts. I would say exemestane was an improvement but not perfect. I have been on it three and a half years, in the last year joints have become much worse and I have been referred to Oncologist to review. My situation is complicated by having existing osteoarthritis in my ankles and knees and now hips. Also chemo left me with foot pain. I struggle to walk but in Feb I started aqua aerobics 4-5 times a week. It is good to feel I am more active but in all honesty still as stiff and general lack of mobility. 

    Speak to your oncologist also if you have a Macmillan centre near you ask for some acupuncture that can help plus they can refer you for gym sessions. It is all worth a try. Don't be too put off by me I am in my ,70s ! Now still getting hot flushes which I didn't get when going through the menopause pause -laughable! Good luck, let me know if you find any magic solutions x

  • thank you, that's really helpful.  I guess it's all a bit of a shock, I figured once they cut out the cancer I could get on with my life but it doesn't seem to work like that!   I'll see if they'll let me try the exemestane.  At least it doesn't list weight gain as a side effect.  I feel like if I can maintain my weight I can keep exercising and maybe fight off all the other side effects.  

    Weirdly, on the subject of magic solutions, I spend a lot of time in Spain and I don't seem to get any hot flushes there, not sure if it's because I'm calmer and less anxious when I'm there but the climate there seems to stop me getting most of the flushes.bizarre!

  • Hi woo1973, I also struggled with Letrozole. I didn't gain weight, but after about 5 months I gained stiff joints and sore muscles. I had started to run as a way of keeping fit and active, using the NHS Couch to 5k app. I managed to run two 5 ks ! Furthest I've ever run in my life. Was very pleased with myself. And thought I would be fine with Letrozole, having had no side effects.  

    But then it all fell apart. 

    I spoke to a Breast Care Nurse, because I didn't just want to stop. Thankfully, she gave me a two-month holiday. The aches and pains disappeared rapidly, so we agreed Letrozole was the problem. 

    She switched me to Exemestane. I've been on it for 5 months now. So far, so good - although it might be making me feel a bit tired. Don't know, because that could be caused by my atrial fibrillation and atrial flutter. 

    I think Exemestane is twice as expensive as Letrozole, so they tend to start us on that. But my breast care nurse was very sympathetic when I told her my problems with it. She said I mustn't suffer in silence: we must find a solution. 

    I hope we have, and I hope you do, too. 

    Wishing you all the best xxx 

    PS  Keep going to Spain  Smiley