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D63's avatar
D63
Member
12 months ago

Endocrine therapy compared to menopause

Hello, this is a question for those ladies who went through menopause before starting on tamoxifen or an aromotase inhibitor. I would be interested to hear if you found your endocrine medication-induced side effects were similar to or worse than those you experienced while undergoing menopause. I am soon to start a 3 week course of radiation and expect to also start endocrine therapy thereafter, but I do not yet know which medication I will be taking. I didn’t experience hot flashes when I went through menopause but I did get joint pain. There may not be any correlation between one’s experience of “real” menopause and endocrine therapy-induced side effects  but the subject intrigues me. For now, that is. When the brain fog descends in the next few weeks I’ll doubtless forget all about it 😉
  • It’s an interesting question. I was on Letrozole for ten years. I had no joint pain, bone aches or flushes at all. No brain fog, emotional swings or anything else. I didn’t during menopause either. My periods simply fizzled out with one very heavy one that my GP cheerfully referred to as a ‘last hurrah’! Letrozole caused some vaginal atrophy and a reduction in bone density, both compounded by my age. Patterns in menopause seem not well researched - the same GP told me that the best advice he could give about what to expect in menopause was that it was likely to resemble your mother’s experience. Which in my case was true. Be fascinating to know more. 
  • Hi @D63

    I had a crap experience with menopause - it started early & lasted nearly 10 years - I had EVERYTHING!   Hot flushes, joint aches, depression, incredible atrophy of the vagina .... I already had (inherited) arthritis & menopause just made it worse.   I think I'd only gone 'normal' for about 5-7 years & I got the BC diagnosis & the AIs brought a lot of it back!  :(  But I am taking CBD oil and that takes the edge off it all :) 

    The first AI I was on made it way worse, so I changed it to another one after just 6 weeks.  Then IT became worse after 6 months, so swapped to Anastrozole and it has suited me much better for the last 5 years.

    Hopefully the brain fog doesn't happen & also hopefully you don't get any side effects as not everyone does!  xx

    take care & all the best for your ongoing treatment xx
  • Hi @D63
    I was perimenopausal when the 'journey' began for me.
    I had started taking HRT to deal with menopausal symptoms, for me it was the joint aches and insomnia more than the hot flushes, although these were present and annoying more than anything else.
    I'm still very early into my endocrine therapy.
    The 2nd week was brutal - not going to lie. But thankfully things have calmed down now and apart from an annoying, constant headache, the joint pain has receded to 'discomfort' rather than the acute pain that I was feeling.
    The hot flushes have returned and increased - more than before - but again, these are very boring rather than painful. Might change my language on this during winter when it's not as easy to 'just wear cotton and layers'. 
    Keen to hear how you go - as the others have said - we're all so different in how we respond to treatments.
    absolute best wishes with your radiation.
    Kelly
  • I wonder if they started us off on taking 1 tablet a week, then twice the next week, then every second day the week after, to 'work up' to a daily dose over 1 month - maybe it would lessen the side effects from going BAM, every day straight off?

    Just a thought? 
  • Hi @D63 I went through menopause prior to my diagnosis and my recollection was mildest of symptoms (bit hot at night), blood pressure changes. 
    The endocrine treatment I’m having is Letrozole, before I started taking it I already had neuropathy in my feet and noticed I had joint pain in my ankles and feet at night. Nearly finished the active chemotherapy and immunotherapy treatments so I will be interested to see if the joint pain reduces in due course. 
    I do feel more heat at night and a very dry mouth. 
    I have been a bit surprised by a level of fatigue.  I thought it might have reduced by now.  It could just be my body saying ‘rest up’ after 14 months of chemo, surgery, radiotherapy and more immunotherapy and this might improve when I complete active treatment and am just taking the AI. I will struggle - I think - if this doesn’t improve, and would open a conversation with my oncologist, GP and gynaecologist. 
    Good question and interesting to hear about everyone’s diverse experiences. 
    I recently listened to the BCNA podcast (2019) about endocrine treatment and whether or not it was worth it. Very interesting 

  • This is a remarkable community to which I am truly grateful to have access. Thank you to @Afraser, @arpie, @cactusk, and @tri for your insights. I’ll update you on my experience when I start the medication in 2 or 3 weeks. It’s all one big lottery. 
  • Hi @D63, I have been advised to take Tamoxifen, think I am peri-menopausal but no real symptoms.  Am concerned about side effects so would be keen to hear how you are getting on with your endocrine therapy and what to expect in first few weeks.  I have given myself a further month to think about it.
  • Hi @Clancy.  I should finish my course of radiation therapy next week and will start Letrozole a couple of weeks after that. I’ll certainly post once I have some feedback on how I tolerate Letrozole. You mention that you are probably perimenopausal and my understanding is that women who haven’t been through menopause are normally put, as you say, on tamoxifen. I don’t know whether the effects of tamoxifen/ aromatase inhibitors are more profound on pre-menopausal ladies because they still have a greater supply of estrogen than post-menopausal ladies. I wonder whether @arpie or @Afraser, who are such fonts of knowledge on this forum, have any insights?
  • @D63 .... All the best for the rest of your Rads treatment xx.  Don't forget to keep moisturising for another 4-6 weeks, tho, as you'll notice that the 'warmth/cooking' will continue for some time yet & important to keep it up. xx

    All we can suggest is that you 'give Letrozole a go' if that is the one suggested for you- as it is considered the Gold Standard of Aromatase Inhibitors.  Lots of members DON'T get side effects, but sadly, I did.

    I was well & truly post menopausal ... and just wanted to hit the beast on the head, so stuck to them ...   Tamoxifen is the only AI that I DIDN'T try over the last 6 years ....

    30 years ago when they were in their 60s, I know of 2 ladies (both my brother's MILs) who had mastectomies & 10 years of Tamoxifen & one has only recently passed of old age (both in their 90s and the other one is still hanging in there!) Back then, it was pretty well the ONLY med that was given, and then, full mastectomies were the most common 'treatment' ... so it would appear to 'work'!  ;) 

    take care & all the best for your appointments xx
  • Hi there
    I was peri-menopausal when all this began. I am on Letrozole, but also Zoladex to shut down my ovaries (treatment induced menopause).
    The first month or so on Letrozle was brutal. 
    Joint aches, significant fluid retention, headaces, on top of the acceleration of 'menopause symptoms'.
    My biggest challenges remain the joint and bone pains, constant headache and insomnia (the reason I started HRT 8 months before). I'm working with the menopause clinic at RNS hospital in Sydney but so far they've only offered more medications, which to date I haven't found helpful.
    I'm now taking 5mg of Melatonin before bed to try to at least get to sleep, i've realised a full nights sleep is not something I'm likely to ever return to.
    I also have Zometa in my cocktail of meds, and am on the early access program for Kisqali (ribociclib), both of which have their own fun side effects too.
    My BC nurse said 'oh yes, joint discomfort is common' when I first let her know.
    I had to come back with 'this is not discomfort, this is pain'. I have so far only had 1 day that I haven't taken panadol osteo (as recommended by the med onc).
    I'm really trying to not have to take meds to deal with the side effects of the meds - so far at least they're only OTC meds.
    As the other voices on this thread have said, see how you go.
    We are all so different.
    Oh - and it was suggested I change from taking the pills in the morning to at night to see if that makes anything better.
    I do that now, but am yet to see significant reduction in side effects.
    K