Forum Discussion

ronnie29's avatar
ronnie29
Member
10 years ago

Think I am overthinking (again).

Hi Ladies,

This is my first post on here, a site I wish I had of found months ago.  

I have just finished six months of chemo, see the breast surgeon next week to find out when I will be having the mastectomy and my oncologist has recently told me that I will need to take Letrozole for the next five years.

My cancer was treated as a triple negative however, because I had 2% positive receptors hence the need of taking the Letrozole.

I have had six months to prepare the mind for the mastectomy however, the Letrozole is a ‘curve ball’ that was thrown at me very recently.

The mind is not accepting the thought of the side effects I may or may not have. The mind is also not accepting the 2% - 5 years of tablets. I have yet to finish my research into this drug and have yet to go back to my oncologist with my list of questions.

Has anyone had any bad experiences with this ???

Cheers

Ronnie.

coping

10 Replies

  • Pink66's avatar
    Pink66
    Member
    10 years ago

    Hi Ronnie, I am glad you have found our community xxxx

    Letrozole affects each person differently and unfortunately until something arrives at your door you will not know..  I personally had joint pain that slowed me down just a little but found hydro, tai chi nad panadol osteo helped me out immensely. I am indeed one at the high end of the scale. Not everyone has the same level of issues as me. But I can tell you that I still got around quite ok while on it.

    The one thing that is true for everyone on Letrozole, is it has the ability to rip calcium from your body and lower your bone density. So ensure that your calcium and vitamin D is kept up.

    Sending you hugs,

    Cheers, Sharon (pink66) xoxoxox

     

  • Beppie's avatar
    Beppie
    Member
    10 years ago

    I have been on letrozole for a year since I finished chemo for the second time breast cancer - only side effect is hot flushes. Previous to this I was on tomaxafen fir 5 years fir the first breast cancer I had. Only side effect was hot flushes too. If your estrogen positive then I'd stay on the pulls - anything that helps 

  • ronnie29's avatar
    ronnie29
    Member
    10 years ago

    I hear you Gina Leanne ... certainly isn't an easy road we are all on is it.

  • ronnie29's avatar
    ronnie29
    Member
    10 years ago

    What wonderful, brave, inspirational women you all are.  Thank you for your honest answers.

     

  • Catscrapcats's avatar
    Catscrapcats
    Member
    10 years ago

    Hi Ronnie, 

    I have only been on Letrazole for 3 weeks and was interested to see say about the feeling sad bit. I have had mild hot flushes, mild achy joints but feel a bit sad and was putting that down to finishing radiation 3 weeks ago. So if this is as bad as it gets I'll be happy and it might even improve over time by the sound of it. All the best with whatever you decide to do.

    Maria XX

  • Gina_Leanne's avatar
    Gina_Leanne
    Member
    10 years ago

    Hi Ronnie,

    I am new to this site too. I had my double mastectomy first and then 5 months of chemo which was a surprise as I originally told the mastectomy would be all that was needed. After chemo was told I needed to take pills for next 5 years. I too am scared of this as I feel I have allowed enough drugs to enter my system over the past 9 months. I have suffered terrible joint pains and exhaustion since chemo and don't like the thought of adding to it for 5 more years. I see oncologist in 2 days time.

    Gina Leanne

  • Ann-Marie's avatar
    Ann-Marie
    Member
    10 years ago

    Hi Ronnie,

    It may have taken you some time but you found us.  Welcome to the online network. My name is Ann-Marie and I am the Online Community Coordinator at BCNA.

    This is a great place to ask as many questions as you like. The members are wonderful and will provide you with the support that you need.

    If there is anything I can help you with please ask away.

    ~ Ann-Marie x

  • ronnie29's avatar
    ronnie29
    Member
    10 years ago

    Thank you ladies ... like everything else that seems scary when you first hear of it ... this appears to also be do-able. :)

  • Afraser's avatar
    Afraser
    Member
    10 years ago

    I have only been taking Letrozole for 3 years but have had no negative side effects. You will be warned of some, but you don't always get any. Taking pills for a long time is quite manageable if you don't have unpleasant associations with them!

  • adean's avatar
    adean
    Member
    10 years ago

    I've been on letrozole for over a year, previously on tamoxifen  had full hystorectomy and then changed meds and I have had less side affects on the letrozole, we all are different so everyone will experience different side affects, the first few months I had terrible aching joints and cramping feet in bed, this was alleviated by magnesium, I also felt sad in the first few weeks but this went away. I'm just glad there is something I can take as an extra precaution. Stay away from google and be best guided by the oncoligist. Regards adean