Hi Emma_S,
I am so sorry to read your story - what a struggle it must be for you. I am not quite in the same situation as you, but still wanted to say ‘Hi’.
With the relevant Letrozole and Tamoxifen - have you been able to try them from different manufacturers? There does appear to be some evidence out there, that although the same active ingredient - the formulation around it can be different from manufacturer to manufacturer. I can vouch for that, that as when on Letrozole I was given a different brand for a month - I became very depressed and had severe joint pains - going back onto my previous brand - they dissappeared…
I am now on a break and will start on Tamoxifen in a weeks time, as I developed severe arthralgia in my shoulder joints on Letrozole, which can sometimes be a ‘delayed’ side effect.
My other thought - being completely non medical -
May it be worth having a discussion with your oncologist or a specialist in the field of oncology and nutrition to discuss whether things may improve if you have a diet high in phytoestrogens? Yes, it is highly controversial as the general advice seems to be for ER+ ladies to keep their phytoestrogen intake relatively low. And as phytoestrogens mimic oestrogen it may be completely counter productive.
Just thinking, because of the way Tamoxifen works - it could - theoretically - perhaps help???
You actually sound the way I did, when I hit the early menopause in my early 40’s - and in those days HRT was heaven sent, as it helped me to become more ‘balanced’ again. So when I was diagnosed in January last year - I was very fearful, that I would turn back into a lunatic, lol. Especially with the double whammy of cold turkey on HRT and Letrozole before my op. Amazingly - it was not the case! It does appear that your body - over time - mittigates the effects of the menopause -
Perhaps it may be worth taking the Tamoxifen in the evening - again - some people say it helps a little. Then try different brands, too.
It may also be an idea to try and contact a local Macmillan centre and see whether you can get some counselling. Although depression/moodswings are connected to hormone withdrawal - there may be some stuff going on inside of you, which may go back to your diagnosis, treatments, etc. Especially as you were diagnosed at 45.
I am now just over 6 months post my active treatment, still needing one more op in January to replace my implant - and I am still struggling with the physical consequences of my treatments. I sometimes still have quite dark days, am fed up with always being between a rock and a hard place with the treatments, frustrated with not being able to get the ‘old’ me or my old life back, having to accept that some things will simply never be the same again, frustrated with my body not functioning the way it did, feeling like a 90 year old in the mornings, when the joints ache…, getting badly depressed when developing arthralgia in my shoulder joints, because of the meds…
Like you - if the Tamoxifen does not do the trick and my shoulder joints improve…I will seriously have to consider to ditch hormone therapy, something I really do not want to do…
Huge hug
Sue xx