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.

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. 🤔

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

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 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.

Hormone inhibitor treatment decisions

15 Replies

birdsong
Member
8 days ago
So sorry you have had such difficulties. I am 71 and recently diagnosed with HER 2 Positive (IHC 3+). I was operated on 3 weeks ago and have an appointment with my Oncologist in several days time to discuss treatment. There appears to be so many different blockers as far as I can see so far. I am becoming nervous as to what will be recommended 😬.
- Tri
  Member
  5 days ago
  Hibirdsong I am sorry to hear about your diagnosis. I was triple positive and commenced the Aromatase Inhibitor Letrozole after my radiation treatment whilst finishing immunotherapy and chemotherapy 3 years ago. The side effects are manageable and I have taken a “holiday” from the tablets for up to a month each year ( for long haul flight travel and other reasons).
  I take them at night which seems to be better for any side effects (I do have aches in my feet now and then). I find yoga is great for keeping my joints mobile.
  Good luck with your discussion. My oncologist thinks it’s worth me being on these for a total of 10 years.
  - birdsong
    Member
    4 days ago
    Hi Tri, thanks for your supportive response and tips of when you found taking meds best for you. I am anxious to hear what treatment my Oncologist recommends tomorrow. I know whatever it is I will get through it as I have this community ❤️ support. Thanks again, wishing you smooth sailing with your treatment. 🩷
- arpie
  Member
  7 days ago
  Welcome to the group birdsong xx So sorry to see you joining our select little group xx
  
  Not everyone gets ALL the side effects from AIs - I was in my mid 60s when diagnosed (now 73) and started with Letrozole, changed to Exemestane then settled with Anastrozole for 7 years!
  
  Wait & see what your Onc recommends .... give it a 'real go' .... and all going well, you won't have any bad side effects xx. If you have issues - let them know.
  
  Make sure you take a trusted friend or relative with you to all your meetings from now on (& consider recording them too, on your phone) xx. It is almost impossible to remember everything & this way you can go back over it in the quiet of your home & take notes. xx
  
  Also, consider listening to Charlotte Tottman's Podcasts on her own experience with BC - she is a specialist breast cancer Counsellor who had a double mastectomy, choosing to stay flat - and was surprised at her own reaction to the news, when she'd been counseling others for many years & thought she 'knew it'! She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts.
  http://www.drcharlottetottman.com.au/my-podcast.html
  
  Check out this thread too - there is a lot of info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx
  https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest
  
  take care & all the best
  - birdsong
    Member
    7 days ago
    Ooops pushed the button too soon. I will keep in touch with what my Oncologist recommends. Cheers.
cranky_granny
Member
11 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
Member
11 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
Member
1 year 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
  Member
  11 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
  Member
  11 months ago
  Thank you for the advice, I will keep you posted. 😊
- be_sage
  Member
  11 months ago
  Thank you 😊
Lily_Rose2
Member
1 year 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
  Member
  1 year 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. 🤔