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DianeD's avatar
DianeD
Member
9 months ago

Letrozole - aches and pains continue

Last year I was switched from Tamoxifen to Letrozole.  At first I was feeling okay on the Letrozole but then I had a post menopausal heavy bleed (thats a whole other story), so had a medication holiday.  When I resumed the Letrozole I started to ache and have body pains constantly, usually at night which resulted in ongoing fatigue.  I saw my doctor who advised to stop taking the Letrozole - I was 4 years post breast cancer at this stage, so it was felt, as my initial prognosis was good, this would be okay.  My issue is now, 6 weeks after ceasing the Letrozole, I still get the body aches and pains.  It seems to be getting slightly worse.  Does anyone have any experience of ceasing the meds and how long does it take to start feeling pain free?

letrozole

13 Replies

  • JosephineB1's avatar
    JosephineB1
    Member
    7 months ago

    My rheumatism got better within 48 hours...but I was only on Letrazole for 6 weeks and took anti inflammatories the whole time.   Exercise helped a lot,,,,even just lots of walking.   

     

  • JosephineB1's avatar
    JosephineB1
    Member
    7 months ago

    ps.   For me the fact that I needed to take anti-inflammatories 4-5 nights a week to manage the rheumatism told me a lot.   I know that doing this long term has other major issues so for me it was a total deal breaker.   Anti-inflammatories are great if you use them sparingly...if not they destroy your gut.   It also made a metallic taste in my mouth so eating became something I no longer wanted to do.   Long term this is just plain awful.    

     Pls don't misunderstand me...I'm not against Western medicine at all.

    I quickly decided to do a Zoledronic infusion for my bones and will continue to do this once every 6 months.   The infusion  made me feel sick for one night and this was acceptable.   It's a personal decision.   I do know it's the hormone blockers that weaken the bones...but I decided even if I decide not to take hormone blockers I can strengthen my bones so they're not as susceptible to cancer if it returns.

    The whole chemo & hormone blocker theory seems to be we give you a drug that makes you feel terribly ill or compromise your quality of life, then we offer you another drug to make it a bit better.    If you have nausea we offer you anti nausea medication.   If you have dreadful joint pain we offer you high doses of anti-inflammatories (long term).  Everything about it feels wrong in my gut. 

    I did listen to the BCNA podcast and wrote down the comments from Dr Richard de Boer (oncologist).

    he said "MOST people I see are cured by the surgery.  We’re trying to improve your odds, but ultimately if the side effects are too great day to day you need to ask if it’s worth doing it.  It’s not true to say if I don’t take the tablet I’m doomed.  It’s not true”.  

    Those words were music to my ears and helped me make my decision to stop.   

    Link below:

    https://onlinenetwork.bcna.org.au/blog/news-and-events/webcast-tonight-thursday-6-june-2019---hormone-blocking-therapy---is-it-worth-it/123395

  • JosephineB1's avatar
    JosephineB1
    Member
    9 months ago

    I started Letrozole 5 wks ago.   Rheumatism is much worse but tolerable with a lot of walking & major increase in anti-inflammatories.   I've had anxiety/depression for years but Letrazole seems to be making it much worse.    I'm often very anxious in the mornings and this can sometimes go away with exercise or later in the day.   However it seems this anxiety now continues into the evenings  when previously I was able to switch off at night.   I'm talking to my oncologist  but I know his agenda is to keep me on hormone therapy.  Is anyone else feeling this increase in anxiety?   I've got other side effects (thrush in mouth, dry vagina) but it's the anxiety that might be the deal breaker.   Living like this for 5-10 years is a horrible prospect and my GP said  Letrozole has the least side effects so I'm reluctant to try others.  

    I did surgery & radiotherapy but refused chemo and I'm struggling with this decision.  I was quite sure when I said no to chemo but this decision is harder to make.   I'm sure my constant anxiety isn't helping me make this decision!  (Grade 2 tumour that had spread to lymph nodes and Endopredict results said 5-10% chance it will return without chemo and endocrine therapy).

    I'm new to forums so not sure if I've just made a new post or reply here.

    • Em2042's avatar
      Em2042
      Member
      2 months ago

      HI All

      First time poster, so not sure if this is relevant but my 2 cents worth....

      I was diagnosed in June 2024, completely randomly and underwent my first surgery - a skin sparing mastectomy (they took the nipple), and sentinel node removal, from my right breast, less than 48 hours after confirmation from the breast surgeon of the extent of my cancer.

      Prognosis following surgery at that point was revised to become a multifocal cancer in the ducts, glands, nipple, tissue and lymph nodes - grade 3, stage 3C requiring further treatment ASAP. 

      After a few weeks to recover from my initial surgery, I underwent 5 months of chemo (AC Rubociclib) and Paclitaxel, followed by a further three weeks of Radiotherapy.

      I then had a few weeks to heal, before my second surgery - a mastectomy to the left breast, including nipple etc, (DCIS and calcification present, likely leading to breast cancer), removal of the temporary expander to the right breast (previously removed), axillary clearance, an autologous DIEP procedure, which in my case required my abdominus rectus also being knitted, along with the portion of my lower abdomen that was removed being used to reconstruct both of my breasts. At this point, pathology indicated that of the 11 lymph nodes removed, 6 had still been cancerous, and that cancer had spread a small margin into the tissue surrounding the axilla.

      I experienced post surgical complications and have also since developed fluid in my breast (am still trying to fend off lymphoedema) and on-going shoulder restriction and pain. I continue to work to strengthen my body, now almost 9 months following my most major surgery, but it is a very slow path. 

      I am on CDK 4/6 Inhibitors and Anastrazole. I was on Letrozole for a couple of months early following my second surgery, however the bone pain in particular was excruciating! After extensive discussions with my oncologist and breast care nurse, I shifted to Anastrazole. It is far from perfect but the bone pain is much less and I'm more able to function day to day. 

      While I have further surgeries and treatments to undertake, I can attest to advocating for alternatives when your body is at its limit. 

      Wishing you the best of luck. 🙂

    • JosephineB1's avatar
      JosephineB1
      Member
      7 months ago

      Thanks Tri.  

      I really want to find others who've made the decision I have made to stop hormone blockers.   I am still seeing and talking to my oncologist, keeping the door & communication open.  

      My oncologist started me on Exemestane and I had 3 very bad days of nausea and stopped.   I'm waiting for him to respond and know he will suggest I try one more before he gives me his "blessing" to discontinue.   

      I'd really like to find other women who have decided not to proceed with hormone blockers.   Is anyone out there?   If so pls feel free to send me a private message.    I was fine with my decision at first but anxiety is starting to rear it's ugly head and it would be so nice to find a support group of some sort.     I have actually met at least 5 women who stopped hormone blocking therapy, one was 15 years ago and she is still cancer free.     Many of these women don't actually want to talk a lot about their decision past their initial conversation.   It triggers them and I understand this.   They have made their decision and want to move on with their lives.  Everyone makes their own decision and I'm 99% sure I'll stick with mine.   I'm still in early days and I know I won't want to talk about this for ever...but right now I do.

      I applaud those of you who want to continue and push past any side effects.... but I'm not in that camp.   If it was 10 weeks or maybe even 10 months  of treatment I would consider this but 10 years on something that has serious side effects to my quality of life is not an option for me.  

      I know the cancer may come back one day...but I also know from women I've met that it may not.

      If anyone else has made (or is trying to make the choice I've made I'd really love to connect somehow.

      • Tri's avatar
        Tri
        Member
        7 months ago

        HiJosephineB1​ you raise issues that we really need to address. I agree whether or not to take endocrine therapy ((AIs) is such a personal choice.

        One thing I feel a bit surprised about is the absence of qualitative data and even quantitative data - but if the data is there I’d like to understand it better, so I can make an informed decision. 
        I think there’s something we might be able to learn from this new initiative to record the data about people living with metastatic cancer (which BCNA has successfully advocated for). 
        It seems odd to me that the national data isn’t there to delve a bit deeper into the long term outcomes and success of treatment decisions - whether it’s  radiation, chemo or AI - in preventing cancer recurrence or metastases beyond a five year survivorship benchmark. 

        In my case I am staying on Letrozole for now and I have to accept that it’s actually no guarantee that I won’t have recurrence. 

        I understand what you’re saying about quality of life and the decision you’ll make and no doubt reassess from time to time. Go well. 

    • deekay77's avatar
      deekay77
      Member
      8 months ago

      Hi!

      I was on letrazole from Feb this year and stopped taking it three weeks ago as I fell into a deep, deep depression (as in, I wanted to leave my husband and kids and was very , very low). I have no previous anxiety or depression. It took around 10/11 days to feel like myself - what a difference!! 

      I am now one week into Exemestane. So far so good - but it is early days.

      oh and the joint pain is insane. In.Sane. 

      • Kirt's avatar
        Kirt
        Member
        4 months ago

        Hi deekay77. It's been 4 months since you wrote that post. Are you still on Exemestane? I'm on Letrozole and it's upsetting my diabetes. I'm now on insulin, which I've never been on before. I'm very weak and it's not getting better. 

        Can you please let me know how you are going now? TIA

        Kirsten xx

  • Tri's avatar
    Tri
    Member
    9 months ago

    HelloDianeD​ sorry to hear about your ongoing aches - that’s not the outcome you were hoping for. I have only had a “holiday” from Letrozole so can’t shed light on the time taken if you cease completely but I did notice reduced aches at night when I paused my Letrozole.

    This is a bit left field but if you are taking any vitamin supplements or shakes, it might also be worth checking with your GP and potentially considering a blood test. We had a bit of a discussion earlier this year about news reports of people experiencing muscular aches and neuropathy type symptoms. They were found - through blood tests - to have vitamin B toxicity. 
    Peripheral neuropathy, aches and vitamin supplements- caution about B6 | BCNA Online Network

     

  • arpie's avatar
    arpie
    Member
    9 months ago

    Sorry to hear your aches & pains issues, DianeD​ ... Sadly, Letrozole can cause these issues .... the bleed could be a mix of changing from the Tamoxifen to the Letrozole ... but it happened & it would have been scary xx

    Going from one AI to another - may take a while before they get 'out of your system' and everyone is different ... so some may take longer than others  :(   

    I went from Letrozole to Exemestane and then Anastrozole within a 3 month period at the start of my AI journey ..... and for me, found that Anastrozole suited me better than the other two.   I have been on it for the last 6+ years, and just weaning off them now, as my AI journey comes to an end.
    Take care - I hope these side effects lessen very soon