Home Now what? The highs and lows of survivorship

Letrozole - Is there a light in the darkness?

SisterSister Adelaide Hills, SAMember Posts: 4,706
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.


  • arpiearpie Mid North Coast, NSWMember Posts: 4,164
    That is just terrific, @Sister - how brilliant is that!?  To suddenly 'not feel pain' when expecting it 24/7 - is a huge corner to turn.  Long may it last!

    I have found that just having the 'edge' taken off the aches & pains has made SUCH a difference in my own case ... and if it enables us both to remain on our medication for the 10 years - all the better!

    Snug up in this cold snap - hard to believe so much snow is around in the middle of Spring!!!

    take care xx  All the best xx
  • AfraserAfraser MelbourneMember Posts: 3,179
    Best wishes, hope the improvement is here to stay! 
  • SisterSister Adelaide Hills, SAMember Posts: 4,706
    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.)
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,310
    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 

  • HendrixHendrix Member Posts: 298
    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
  • RomlaRomla AdelaideMember Posts: 2,043
    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

  • arpiearpie Mid North Coast, NSWMember Posts: 4,164
    How did the paddle go, @Sister ?  I hope it wasn’t too cold for you! Xx

  • SisterSister Adelaide Hills, SAMember Posts: 4,706
    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.
  • kmakmkmakm MelbourneMember Posts: 7,942
    What a great post to read @Sister! I hope the absence of pain is a permanent development for you. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 4,706
    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.
  • kmakmkmakm MelbourneMember Posts: 7,942
    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*
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