Someone on long term Letrozole?

Options
trudy-erl
trudy-erl Member Posts: 38
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi:

I've been taking Letrozole (Femora) for 7 years. I never felt well with many side effects. However, the last 3-4 months it has become extremely difficult. I'm very depressed (am on an anti-depressant), have zero energy, and could be in bed 24/7, my hair is falling worse than ever. I knew it is accumulative but didn't expect it to be this bad.

I will be seeing my Doctor but would appreciate opinions, PLEASE.

Would you ask to take a break and go off it for sometime OR would you ask to be switched to another AI? To be on nothing, scares me very badly.

Thank you in advance. Please, feel free to PM me.

· Share on FacebookShare on Twitter

Comments

  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2014

    Trudy,

    Femera lasted 4 years for me.  Scans then started showing up new mets to the bones.  I'm on Aromasin & Afinitor now.  Lots of mouth sores with this one, not too bad with joint pain.  I would ask your doctor about other AI's.

    Terri

    · Share on FacebookShare on Twitter
  • trudy-erl
    trudy-erl Member Posts: 38
    edited June 2014

    Thank you so much Terri:

    After 4 years, it no longer worked for you OR you decided not to continue with it? I'm truly sorry about your results. I had a horrid time on the last batch of chemo. Did you get straight Taxotere as chemo?

    IBC truly is a S.O.B.  :(

    Hugs,

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited June 2014

    I've been on Femara/letrozole since 2/2010 with no SEs.  As far as I know today, I'm still NED (No reason to think otherwise but always a possibility of changing in the future.)  I've been told I'll be on it forever.

    · Share on FacebookShare on Twitter
  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2014

    Trudy:  I started with tac (taxotere, cytoxin & adriamyacin) for 8 months.  A year later I had a bi-lateral mastecomy with reconstruction.  I then did 4 years of letrozole which kept me stable.  When we found out the Pet scans were showing new bone mets & a lymph node lighting up; we switched to Aromasin & affinitor.  My last scan still was not stable so we did spot radiation to L4 & L1.  Will get scans again in Aug to see how things are.

    Best wishes on your treatment.  7 years on letrozole is great.

    Terri

    · Share on FacebookShare on Twitter
  • trudy-erl
    trudy-erl Member Posts: 38
    edited June 2014

    Hi:

    Firstly thank you one and all for your input.

    I agree 7 years is long  a great situation. But there is also a however. I can truly say I've had very, very little quality of life for the last 7 years :( So abnormally tired, awful insomnia. and of course depression...to say nothing of brushfuls of hair coming out! Oftem am in bed 24/7.

    How many (with these symptoms) would  try a different another AI? How many would carry on, with poor life quality? How many would ask for a few month's off of Femara, and start again????   Extremely troubling for me...but need to make a choice:(

    Thank you.......................Hugs to my SISTERS :)

    · Share on FacebookShare on Twitter
  • Roseart
    Roseart Member Posts: 1
    edited June 2014

    Hi Trudy,

    I have been taking Femara since April 2014 and have noticed my joints are stiff and I have pains and aches everywhere. Then they did a bone density test and found I was osteopenia and heading towards osteoprosis, so then I had Zometa to strengthen my bones, I have this every six weeks and take Caltrate. I was told Krill Oil is good. I suppose I dont want to go off the Femara because I know my cancer loves estrogen and Femara stops my body from making it. Talk with your Onc and see what he can come up with. Take care 

    · Share on FacebookShare on Twitter

Categories