Stopped tamoxifen and letrozole after ten years

[genandtonic]

The doctor, very luckily has taken me off oestrogen stopping drugs 10 years after chemotherapy.
is anyone else going through similar? I’ve been off it for 2 weeks now and am crushingly tired and feeling wierd. Is this usual? Any tips? Thank you!

I still have four more years of letrazole to go so I am really interested to hear what it’s like when you stop. It absolutely exhausts me though, did it not make you tired when you were taking it? In terms of feeling weird I guess it’s just your. body getting used to having a hormone floating around that hasn’t been there for years.

Neuropathy related injury has also had me in hospital twice recently, at one point they were talking about amputating my toe. Cancer really is the fucker that doesn’t stop giving isn’t it!

oh my goodness flatandhappy (i love your name). It really does just keep giving that’s for sure. I’m very pleased for you that your toe is intact 😳
yes it made me tired too - I’d suddenly get drained of all energy, and lots of mysterious aches and pains - like you I’ve got numb toes. I mean what?!
I’m hoping that will change, I’m told it will as some o estrogen gradually returns but at the moment ( 2 weeks) I’m foggy brained and emotionally a mess. Thanks to counseling I’m actually aware of this and not putting it down to me being a total useless failure that can’t wear pink and run marathons.
so I recommend counseling!
its very nice to hear from you, especially as I feel that after the dramatic bit everyone expects you to be fine again and no one seems to cover the later stages of treatment.
you and your toe have got this! 💐

Thanks @genandtonic Would love to know how you go as time goes on. Do your numb toes get feeling again? Do you finally get your energy back? Update if you have the time/can be bothered!

I really should go back to my counsellor but I gave up because humour was my coping strategy and last time I saw her I felt I had paid her $300 to make her laugh for an hour and I could think of better things to spend $300 on. Hope things get better for you x

I was on Tamoxifen for 7 years. I stopped in November. I'm 47.

The fatigue has gone but it feels like my "natural" peri-menopause symptoms have come through, despite having some when on Tamoxifen. My sleep has got worse, as has my brain fog, and I've had more hot flushes.

Wow, flat $300 an hour?! Dm me and I can offer you some names here in the uk for a lot less!
If it helps, I use laughter as a coping thing too, but she pulled me up on it and confronted it which was useful. It’s a lot less exhausting now she’s got me to admit to myself that this is freaking hard. This was a few sessions in though.
Ill update - it’s amazing how chuffed I am that someone is interested!

hi minniemountain thanks for this. It must be quite tricky for your body to go from repressed oestrogen to getting it again for your body to then repress it! Good luck with it all.
I know when I started tamoxifen (in my 50s) I felt I’d gone from middle aged to OAP overnight.
maybe I’ll now go from knackered old hag to delightfully enthusiastic goddess!

Tip - in search of being said goddess don’t ask your hairdresser for a shaggy bob. You will look like a footballer from the 80s!

Thanks @genandtonic but I’m in Sydney and don’t want to do online.

@MinnieMountain That sucks, it really is the worst of all worlds. I was 55 on diagnosis so had already been through menopause. I was so pleased that my menopausal was so easy, little did I know what was to come.

ah well, flat Sydney is quite a distance from the UK. Good luck though.
I was 53 when diagnosed so ditto re menopause.
certainly sympathise re Brain fog minnie I’m all over the place - get lost in the car and wander about for ages.

How are you now @genandtonic? Have been wondering if things have improved as time passes.

Thanks flat how are you? And hello minnie if you’re about.
pleased to announce that emotionally I’ve stopped feeling peculiar. Have also stopped getting stupidly lost even with satnav, so that wierd ‘ brain not engaging ‘ has diminished.
im finally managing to go on long walks and though still need an hour or 2 to recover it’s not that absolutely exhausted feeling that I’m sure you’re familiar with.
also just realised my arthritic foot has stopped being so painful! Woh how did I not notice?!
am still knackered by 7pm ( get up at 6.30) with that feeling like your very blood is tired, but it may be just needing to get out and excersise.
i ve joined a gym ! Yet to go more than once a week but at least i feel it’s possible so maybe mood has improved too.
bit of a definitive list! Sorry but didn’t realise what has actually changed. Kind of nice to write it down to remind myself.
I hope this helps you. And anyone else reading.
all comments welcome, it’s nice to chat as friends and family feel like ‘ well your chemo is over so you’re back to normal’ and don’t get it .
love to all xxxx

Great to hear that things are going well for you @genandtonic. Only four more years and it will be my turn. I have just finished a 12 week course of antibiotics which, alongside the femara, totally flattened me. I am extremely grateful for a supportive DH (and adult kids at home who help out as they should) as I have been able to do bugger all for months. We are off to Bali tomorrow for a holiday, I am so looking forward to it as last time I was there I was on crutches so we couldn’t do much. I got another lecture from my orthopedic surgeon yesterday about how I nearly lost my foot and how potentially dangerous peripheral neuropathy is. No shit Sherlock!

Rthanks for the update flat
woh you have been through the mill. Nearly losing a foot, yikes. I had NO IDEA peripheral neuropathy was that dangerous. I thought it was just annoying pins and needles. Very very glad you’re ok.that must have been scary.
enjoy Bali! I went years ago and it’s my dream to go back , magical place. Have a very well deserved wonderful time to you and your husand and children. 🌴🌞