Forum Discussion

be_sage's avatar
be_sage
Member
3 months ago

Hormone inhibitor treatment decisions

Sorry this is a long post.

70 year old, between August 2024 to April 2025 diagnosed DCI, PR+, ER+, HR -, R partial mastectomy and reconstruction, radiation, Anastrazole(such awful, awful side effects ) 4 months then Exemestane 2 months. Completely crashed from side effects of Aromatase Inhibitors, had to stop multiple antidepressants in preparation for Tamoxifen, so crashed even further, quality of life so low only my family kept me here. Stopped Exemestane end of March couldn’t keep going. All this on top of Fibromyalgia, chronic pain, major long standing treatment resistant depression. Have been having positive ketamine pain management treatment and psychological support from onco-psychologist and with concerned calls from onco-endocrinologist and clearer mind realise have realised that i need to review my treatment decisions. I am still scared of restarting Exemestane but more afraid of Tamoxifen side effects. I’m due to see endocrinologist in 2 weeks to discuss what to do next but am appealing to you all to suggest some options or feedback so I go with as much information as possible.

treatment decisions

8 Replies

  • cranky_granny's avatar
    cranky_granny
    Member
    2 months ago

    be_sage​ sorry taken so long to reply

    I found when taking in the morning I felt the side effects more during the day eg hot flushes. Aching joints nausea etc etc   At night with melatonin and pain relief I sleep through most of it. Summer is hardest as Im already hot enough. But I have learnt how to get back to sleep. Now coming up to 8 yrs on blockers the Ibrance was added in 2020 which too had  a bit of getting adjusted to. 
    I take panadol osteo which helps with joint aches. What swelling i had settled down as well. I do sleep on an adjustable bed and my feet are slightly elevated the head is up higher but I have refux so if im not propped up I choke.  The joys of deteriorating body with age.  All my different specialists say that each of my various health problems aren’t caused by my cancer medications. Most of them are hereditary (thanks mum and dad)  They each work around my cancer treatment which is great that they put it as priority 1   

    You can only do what suits you  and be advised by your treating team. Ask them questions and have them answer in layman’s terms. 
    It does baffle me how each of us can react differently to things. Tamoxifen for me was worse than the anastrozole. 
    keep us posted on how you go at your next appointment. 

  • Minka's avatar
    Minka
    Member
    2 months ago

    Have you discussed your recurrence risk with your oncologist? Without this information you can’t really decide if it’s worth it for you. While - if you can stand it - you’re better off to stay on it, the truth is if it’s ruining your life you CAN stop. Only you know what you can live with down the track. ❤️

  • cranky_granny's avatar
    cranky_granny
    Member
    3 months ago

    be_sage​ Taking hormone blockers are a trying time. Finding one that suits each individual is a pain we all react in our own way. I hung in there with the anastrozole after the tamoxifen. The worst of the side effects have settled to tolerable most days I did muck about with the time of day I  took it and settled on evening after dinner. I hope you find one that suits you. 

    • be_sage's avatar
      be_sage
      Member
      2 months ago

      Hi cranky_granny, just wondering what difference it made to your side effects taking it in the evening?

      I  have been on morning dose Exemestane for 2 weeks, after an 8 week break in treatment, and the pain and swelling in my hands and especially lower legs and feet  have been awful . My sleep is so broken, with my fatigue and being so tired I really want to sleep but the pain wins. 

    • be_sage's avatar
      be_sage
      Member
      2 months ago

      Thank you for the advice, I will keep you posted. 😊

  • Lily_Rose2's avatar
    Lily_Rose2
    Member
    3 months ago

    Sorry to hear you're having problems with treatment options. I am also 70 and have had a similar journey to yourself. Examestane crippled me and my Oncologist changed me to Tamoxifin. After 6 months I've had no side effects at all except stubborn weight gain. We each respond differently to medication, but I can confidently report that Tamoxifen is a much kinder treatment for me. Wishing you well in your decisions and future health journey.

    • be_sage's avatar
      be_sage
      Member
      3 months ago

      Thank you, it is hard to know what to do at times, surgery and radiation seemed  more straightforward decisions but the hormone inhibitors so much harder. Tamoxifen is up for discussion at next appointment, so will see how it goes. 🤔