Best Of
Re: Lower dose tamoxifen
@Milly21 You are lucky you could tolerate 20mg for as long as 6 years before it got too much. 15 weeks is all I could take before the oncologist dropped my dose to 10mg. Then another 15 weeks and he dropped it altogether. Unfortunately that didn't work either as four months later I had a recurrence. He now says we have to find a way to stay on it. So I'm now on 10mg every second day (equiv 5mg) and will take regular breaks from it when it gets too much. Better to be on something than nothing but I can't say if it will be successful. There's not many options as I'm only in my 40's, but they have had success in American studies so I'm hopeful.
Esjay
2
Lower dose tamoxifen
I have taken tamoxifen 20mg for 6 years,I have now had a year off tamoxifen as I stopped taking due to side effects, my oncologist would like me to persist and start taking it again as I’m in my 40s and he considers this young.
my surgeon said I could just take less,he said there has been research that says it may be as effective,or I suppose it’s better than not taking it, has anyone doctors been happy for them to take less tamoxifen than 20 mg? And if you take less have you noticed an improvement in the side effects? If so do yo take 5 mg or 10 mg a day?
my surgeon said I could just take less,he said there has been research that says it may be as effective,or I suppose it’s better than not taking it, has anyone doctors been happy for them to take less tamoxifen than 20 mg? And if you take less have you noticed an improvement in the side effects? If so do yo take 5 mg or 10 mg a day?
Milly21
2
Re: Does anyone have shoulder issues? Torn Rotator Cuff/Frozen Shoulder etc
Oh making the bed is the worst, I thought I could do it and ended up feeling like I'd run a marathon. Wasnt worth it. I've had a frozen shoulder before and I was getting some similar shooting pains over the weekend...I have not seen a physio since all of this happened - will get on to that 
Re: Does anyone have shoulder issues? Torn Rotator Cuff/Frozen Shoulder etc
Yes! Feels like the start of a frozen shoulder and my joints are all stiff - mainly from my hips down. I was only diagnosed in Nov24, had lump and lymph nodes removed in Dec24 and started zoladex this month to put in into menopause (radiation started next week). Body feels 40 years older than I am at the moment.
Re: Insulting and Judgmental Comments
@klf wishing you all the best with your surgery. Let us know how you go.
Dh5Wy83
1
Re: Have you had withdrawal side effects after stopping Arimidex!
It's great news that you are also coming off Anastrozole @Arpie.
I think I've missed the boat as it's been 5 days since I stopped and the withdrawal side effects are slowly lessening. I asked him at the time about coming off cold turkey and he said it would be fine. I think I'll give feedback to his practice manager which may help the next person in my position.
It makes complete sense that there would be side effects. We all had some initial adjustments when we first started taking it - I remember being a bit nauseas and tired, and it's a strong drug to abruptly stop.
Good luck with your weaning off! I hope you feel better for it x
I think I've missed the boat as it's been 5 days since I stopped and the withdrawal side effects are slowly lessening. I asked him at the time about coming off cold turkey and he said it would be fine. I think I'll give feedback to his practice manager which may help the next person in my position.
It makes complete sense that there would be side effects. We all had some initial adjustments when we first started taking it - I remember being a bit nauseas and tired, and it's a strong drug to abruptly stop.
Good luck with your weaning off! I hope you feel better for it x
Re: Have you had withdrawal side effects after stopping Arimidex!
Great that you can come off the Arimidex @Hopes_and_Dreams .... have a chat to your Onc about coming off it 'slowly' rather than a sudden stop - even if it means going back on it again, but reduced dose (getting less every week) for a while? Hopefully that will help alleviate the side effects. There are lots of meds that they 'wean off' gradually (steroids, opioids & others) ... and I reckon that AIs should be one of them ... (AND should wean on too!!)
I am currently coming off 6 years of Anastrozole & am doing it slowly - and so far, so good - no side effects! None of the aches & pains either, that I'd had whilst on it full-time! I'll be off it for good, soon!
I am currently coming off 6 years of Anastrozole & am doing it slowly - and so far, so good - no side effects! None of the aches & pains either, that I'd had whilst on it full-time!
I'll be off it for good, soon! arpie
2
Re: Have you had withdrawal side effects after stopping Arimidex!
Dear @Hopes_and_Dreams,
I'm still on anastrozole, not arimidex, so can't comment on side-effects after stopping. But eight years since your mastectomy - That's good!
from jennyss in Western NSW
I'm still on anastrozole, not arimidex, so can't comment on side-effects after stopping. But eight years since your mastectomy - That's good!
from jennyss in Western NSW
jennyss
1
Re: Newly diagnosed metastatic cancer
Thanks for your update @Rhubarb21. I get people saying to me i look good too. It's a common thing said when we have metastatic breast cancer. I guess people just don't really understand what it can be like for us. I say to those people, the real question to ask is ' Do you feel as good as you look?'
Mets is hard. I don't have as many bone mets as you but I have it in my liver too. One of the ladies in my support group has mets in so many of her bones and she has been metastatic now for 11 years. My oncologist says it doesn't matter where the mets are as long as treatment halts progression. That's what we want for as long as possible.
So pleased you have your kids support. None of us could manage without our nearest and dearest. One thing I did was to stop thinking I was dying. I started off like that when I was first diagnosed with mets. Then I thought that I am not dying (not yet). What I am doing is living with metastatic breast cancer and i am living well, as best I can and it makes life for me far more enjoyable. Keep enjoying life, keep doing everything you love and being with those you love.
Mets is hard. I don't have as many bone mets as you but I have it in my liver too. One of the ladies in my support group has mets in so many of her bones and she has been metastatic now for 11 years. My oncologist says it doesn't matter where the mets are as long as treatment halts progression. That's what we want for as long as possible.
So pleased you have your kids support. None of us could manage without our nearest and dearest. One thing I did was to stop thinking I was dying. I started off like that when I was first diagnosed with mets. Then I thought that I am not dying (not yet). What I am doing is living with metastatic breast cancer and i am living well, as best I can and it makes life for me far more enjoyable. Keep enjoying life, keep doing everything you love and being with those you love.
Cath62
4