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

11 Replies

Sort By
  • SallyJ's avatar
    SallyJ
    Member
    3 years ago
    Copy Link
    Thank you for asking :)
    I am doing well the team around me is so caring and thoughtful 
    I have positive friends and family.
    Also treatment plan mapped out now we know what we’re looking at with HER2 + as well as ER + and I spoke with a surgeon last week 
    It’s good having a plan 

    Sally
    take care everyone 
    thinking of you all 

  • Arn_007's avatar
    Arn_007
    Member
    3 years ago
    Copy Link
    Hi @SallyJ

    How are you holding up?  Is there a bit of a plan going forwards or still early days?
  • arpie's avatar
    arpie
    Member
    3 years ago
    Copy Link
    So sorry to see you here @SallyJ - you are in the right place for support and information from those who've gone before you xx.  It is a huge shock to the system .... your brain will be going in all directions ..... take plenty of deep breaths, try and enjoy your Xmas with family & friends ..... difficult tho it may seem xx

    We're here to help you along the way - as mentioned - there are NO silly questions, so ask away xx

    As well as having your partner with you, consider recording all your early sessions with your team, as it can be difficult to remember everything that was discussed. ....

    Check out this post for a lot of 'general' info on the forum & some links that may be of assistance to you - even some funny links as well .... which I hope may give you a giggle xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    take care & all the best with your upcoming appointments - and Merry Christmas xx
  • Fufan's avatar
    Fufan
    Member
    3 years ago
    Copy Link
    Welcome, @SallyJ: you will find a lot of support here. As they’ve said, put yourself first and accept any help offered.   I empathise: it is exactly a year since I got my diagnosis.  Try to enjoy your Christmas, I will be thinking of you.
  • Julez1958's avatar
    Julez1958
    Member
    3 years ago
    Copy Link
    Hi @SallyJ
    Whilst it’s never a good time to get such news it’s especially awful just before Xmas - I agree with the comment above , this is a time to put yourself first , it is a bit of a whirlwind following the finding of a lump or other symptom , tests , tests and more tests , then bam, surgery, chemo , radiotherapy ( not necessarily all , and not necessarily in that order).
    Once you have a plan from your team you will feel a lot more settled .
    This is an excellent organisation , the aim when it was set up was that no woman should have to deal with a diagnosis of breast cancer alone. The website has a lot of very useful stuff ( much safer than “ Dr Google”) and this forum is a great resource , because we have all been there one way or another we all “ get it” in a way others don’t, no matter how much they care.
    Take care 🌺
  • SallyJ's avatar
    SallyJ
    Member
    3 years ago
    Copy Link
    Thank you so much for your kind words everyone really appreciated 
    Luckily I have a partner it’s a shock to him as well, he’s such a darling we have been to the hospital every day this week and supporting me in his own way. 
    I just never thought this would happen to me, I have friends & family who have had or have cancer. 
    Sally 

    lots of hugs and kisses 🌻 to all 
    thank you again 
  • Cath62's avatar
    Cath62
    Member
    3 years ago
    Copy Link
    Hi @SallyJ, what a shock. It is so stressful at the beginning of all this but as @AllyJay  said things will feel s bit better with a plan in place. It's never a great time to get this news but Christmas is particularly hard.

    Do you have support? It helps to bring someone to appointments. I found that with the stress of it all sometimes I would not hear some things as I was still processing the last thing the medical person said. It helped me to have my husband attend my appointments with me. 

    Write all your questions down and remember none of them are stupid. Just on that we here are all happy to help and talk about anything really.

    Stay as healthy as you can. Good food and a little exercise if you are up to it during treatment. It really does help with all the fatigue that treatment gives.

    Most of all put yourself first. If there is one time in your life to do this it is now. Forget everyone else. Take offers to cook, clean or whatever it is that you need. 

    Sending you lots of love and a very big virtual hug 💐
  • AllyJay's avatar
    AllyJay
    Member
    3 years ago
    Copy Link
    Hi there Sally...I'm so sorry you've had to join our group...such shitty entry requirements for sure, but welcome. The waiting part is the worst, as you wait for all the scans and whatnot to be done and reported on. Once you've seen your oncologist and a Sally Specific Plan is drawn up, you'll probably feel a little more that things are happening. I'm sure others will hop onto the thread with their welcomes, suggestions and comments, but I thought I'd just say "Hi" in the meantime. Big hug...Ally.
  • kmakm's avatar
    kmakm
    Member
    5 years ago
    Copy Link
    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
    Copy Link
    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
    Copy Link
    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
    Copy Link
    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.
  • Romla's avatar
    Romla
    Member
    5 years ago
    Copy Link
    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
    Copy Link
    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
    Copy Link
    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
    Copy Link
    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.)