Not coping with taking my letrozole medication after breast

omg where do I begin had a lumpectomy 13/12/16 results 2 weeks later back in 10/1/17 for second operation again 2 weeks later back for results back in 7/2/17 for mastectomy all this was fine  it was like a rollercoaster didn't have time to think about myself only how my family would cope etc then a month on I started taking letrozole and bang I have never felt so unwell is this normal? Has anyone else experienced awful side effects from this tablet?

  • Loads of love and luck x 

  • Thankyou , I wish you all the very best x

  • Hi I have just read your post and wondered what is an Onco DX score used for.

    Who would know this the oncologist ? 

    I hope you are coping ok now 

    Regards Hjf

  • I have been on letrozole for almost three years and had a mild stroke year and a half caused by high blood pressure. Consultants thought it was due to taking letrozole.  Now I have severe joint aches, dr suggests its arthritis.   I am going to try the arnica oil as I am a golfer, so here's hoping. Ps am still on letrozole 

  • Arnica oil was amazing for me!! Is the letrozole still managing your cancer? 
    Have you asked if they could move you on to different treatment ? 
    Sending u all the best wishes

  • Hi Aggy

    I stared to take letrozole mid January  this year !!

    I had lots side effects first two months or so and still have some now

    Most I had pain in the legs and ankles!! Surgical stockings help

    I start wearing in the morning and take off before go to bed that really helped

    First few weeks I had sleeping trouble as well 

    Effected short memory too

    I still have sometimes pain in knees but leggs and feet are ok now

    Give about two months if it doesn't settle then ring the nurse at breast clinic they might change to different tablets

    Jeet 123

  • Just found out I cant take arnica oil because of blood thinners. Have been going for acupuncture and it helps with stiff neck pain, but am worried that the letrozole is causing the onset of arthritis so I dont know whether to have a break and see how I feel.  I used to be so fit and now well just rubbish 

  • Oh that's a shame.  I know how you feel. Can you speak to your Macmillan nurse and see if they can give you anything else to try? 
    sorry you feel rubbish ... I hope things improve for you x

  • Hi everyone.

    I’ve just come across this discussion and am glad to chat with others on Letrozole. Sorry to hear about all your side effects.

    I’ve been on Letrozole for about 6 months after a lumpectomy for BC returning after 23 years.

    It hasn’t made my osteo-arthritis pain any worse, thank goodness, but I do have all sorts of other problems since I started taking it.

    I often get a hot flush a couple of hours after taking it at 9pm abd the odd one during the night. 

    My hair comes out by the handfull when I wash or brush it, but I still have plenty at the moment.

    The most obvious problems are very visible - strong, wiry whiskers on my face and neck and red, spotty patches on my face.

    Depression is creeping up on me and I wonder if this is reaction to the way I look or a side effect of the Letrozole.

    Sorry for the long ramble! Hope you’re all progressing well with the treatment. x

  • Hi  I'm so glad to see all these posts I've been taking letrozole for six years and side effects are getting worse. I can't drink even the smallest drop of alcohol as I come out in a rash so I have to make sure when I eat food there is no alcohol in the sauce! I didn't realise it was the letrozole causing my tiredness and panic attacks and my migraine are out of control upto 12 a month!!!. Also I get sun stroke very easy. They told me last year I could come of the tablet as I had taken it for 5 years but I thought I would carry on, but I'm so ill with panic attacks, fatigue, migraines and aches. I thought I was going mad. So glad I  saw all these posts. I'm going to stop it now. I didn't realise letrozole was causing so many problems so glad I saw all your posts I feel more positive xx