Forum Discussion

Sister's avatar
Sister
Member
5 years ago

Letrozole - Is there a light in the darkness?

I'm very, very cautiously expressing hope that things may get better on Letrozole.  Some of you may know that I have been one of the unlucky ones to have very severe side effects from the AI.  Joint pain, soft tissue pain and injuries have been hugely debilitating for almost the entire time I have been on it (ticked over 2 years at the beginning of August).  Well, I hesitantly say this...  I got home from work on Thursday, got out of the car and thought, "that's weird - almost no pain".  Now this is the time of day that I am usually struggling really badly and hobbling into the house as quickly (joke) as I can to medicate.  No need to hurry.  I am still feeling that way.  And it can't be due to warm weather because it has been freezing here.  I am not abandoning the medication that has taken the edge off the pain enough to make it manageable, but I am hoping that I have turned a corner.  I have to admit that I'm also in slight state of disbelief and a bit suspicious that things could change so radically.  My oncologist said a couple of appointments ago that often after about 12-18 months pain settles down but I think we were both disappointed and resigned that this wasn't happening for me.  Given I am on this for at least 8 more years that's no minor obstacle.

I realise that it might get bad again but I can now hope that it will also get better and maybe this will also give others hope for the same.
joint-pain
letrozole
side-effects
  • kmakm's avatar
    kmakm
    Member
    5 years ago
    It's so frustrating isn't it? I was bumbling along with my normal levels of pain until suddenly in August it got much worse. And of course with our Stage 4 lockdown here, allied health shut and I couldn't even get a few days of relief from osteo. Sometimes I've woken myself up at night moaning with pain. *Sigh*
  • Sister's avatar
    Sister
    Member
    5 years ago
    I wish it was @kmakm.  It's crept back over the last few days but I feel more positive about it as I know now it can change.  I just wish I could work out if it's random or if there was a trigger.
  • kmakm's avatar
    kmakm
    Member
    5 years ago
    What a great post to read @Sister! I hope the absence of pain is a permanent development for you. K xox
  • Sister's avatar
    Sister
    Member
    5 years ago
    Have had a great time on the water (Yorkes) but the weather has turned now.  Have given myself a good upper body workout - it's kind of nice to know that the muscle soreness is the sort that comes from working hard rather than unexplained.
  • arpie's avatar
    arpie
    Member
    5 years ago
    How did the paddle go, @Sister ?  I hope it wasn’t too cold for you! Xx


  • Romla's avatar
    Romla
    Member
    5 years ago
    Fantastic news and hoping the changes are sustained.I know the body adapts just yours may have taken a while .Mine adapted early (I had no chemo and passed thru menopause 20 years earlier) but a bit unstuck atm however we persist and try other options. Prolia been very protective of my bones so hoping 10 yeas might be possible for me on AI..

    I have had 11 days off of Letrozole and think a bit has abated for me.Have started 5 km walking in and around the weather and going ok. 

    Be a bit wary re your footwear  as plantar fasciitis is not a nice soft tissue injury. I too have a shoulder injury related to upper arm muscle tears and tripping going upstairs but improving. It’s an odd thing to say but my soft tissue don’t seem as tight and that might be help mitigate injuries.

    Enjoy your surf tomorrow but think about a winter wetsuit.( and a trip to PtE bakery afterwards) xo


  • Hendrix's avatar
    Hendrix
    Member
    5 years ago
    I’ve been on Letrozole for 2.5 years and I have good and bad days...taking magnesium tablets helps some what...I’ve been told reformer Pilates helps but with Covid lockdown I’m yet to try it. I think side affects change...my boobs feel tender now and feel full...I’ve had ultra sound all clear and my oncologist feels just another side affect...hopefully it gets easier for you 😊 xx
  • iserbrown's avatar
    iserbrown
    Member
    5 years ago
    Woo hoo!  Maybe you have turned the corner.  They do say, and I am testament to that, that the body adjusts

    Best wishes and enjoy 

  • Sister's avatar
    Sister
    Member
    5 years ago
    It's really strange - even where it brought on arthritis in my fingers - no pain.  The only thing I'm feeling at the moment is a little discomfort in my feet and some from an injury to my shoulder.

    No snow after all on Mt Lofty but I am planning to hit the waves tomorrow so hopefully a bit warmer.  (I might be complaining about another type of pain from the exercise.)