Forum Discussion
Having a 4 week break from Exemestane/Aromasin ...... who else has done that?
I saw my Onc yesterday, who has suggested that I have 4 weeks off Exemestane from yesterday - to see if the hand aches (in particular) 'lessen' and to see how much of the pain may be attributed to arthritis (which I know I have - but was never at this level of pain) or a direct result of the AI.
I know a lot have had a break from Letrozole ..... who's had a break from Exemestane/Aromasin?
Up til a couple of months ago - I was happy to go onto ANYTHING ELSE to give a go - to lessen the side effects ..... but in recent weeks, most of my other side effects (particularly the hot flushes) have abated, so the remaining problem was really the hand pain and some hip/knee (which I had to a small degree before being diagnosed with BC.)
It will be interesting to see how quickly the pain lessens & by how much. Currently, it wakes me up often during the night - and I have it all day. In the morning, my left hand fingers in particular just won't 'bend' until 1hr+ after getting up - and also trigger finger in my thumb & middle fingers. I currently can't use my thumbs to pull up trousers or disengage the hand brake in the car ..... and a myriad of other day to day things - but if I had to go onto another AI or Tamoxifen - and the 'pay off' would be to go back to hot flushes & other nasties ..... I am not keen to do that. I'd rather stick with the hand pain, even tho it frustrates me with both my favourite past times (Uke Playing & kayak fishing!)
Depending on the outcome of the 4 weeks off AIs, I may then stay on Exemestane, or may go to Anastrozole/Arimidex (the one with the least number of side effects - but sadly still includes insomnia!) Anastrozole/Arimidex doesn't appear to affect the joints so much. If you are on it - how is it affecting you?
She will ring me in 4 weeks to see how I am going & then decide which one to go with. She was not keen for me to go onto Tamoxifen (only as a last resort) as she said there is a slight chance of cervical cancer and other issues that she was not happy with.
I had a bunch of other questions to ask, but bloody forgot (even tho I had them written down!) DUH!
I know a lot have had a break from Letrozole ..... who's had a break from Exemestane/Aromasin?
Up til a couple of months ago - I was happy to go onto ANYTHING ELSE to give a go - to lessen the side effects ..... but in recent weeks, most of my other side effects (particularly the hot flushes) have abated, so the remaining problem was really the hand pain and some hip/knee (which I had to a small degree before being diagnosed with BC.)
It will be interesting to see how quickly the pain lessens & by how much. Currently, it wakes me up often during the night - and I have it all day. In the morning, my left hand fingers in particular just won't 'bend' until 1hr+ after getting up - and also trigger finger in my thumb & middle fingers. I currently can't use my thumbs to pull up trousers or disengage the hand brake in the car ..... and a myriad of other day to day things - but if I had to go onto another AI or Tamoxifen - and the 'pay off' would be to go back to hot flushes & other nasties ..... I am not keen to do that. I'd rather stick with the hand pain, even tho it frustrates me with both my favourite past times (Uke Playing & kayak fishing!)
Depending on the outcome of the 4 weeks off AIs, I may then stay on Exemestane, or may go to Anastrozole/Arimidex (the one with the least number of side effects - but sadly still includes insomnia!) Anastrozole/Arimidex doesn't appear to affect the joints so much. If you are on it - how is it affecting you?
She will ring me in 4 weeks to see how I am going & then decide which one to go with. She was not keen for me to go onto Tamoxifen (only as a last resort) as she said there is a slight chance of cervical cancer and other issues that she was not happy with.
I had a bunch of other questions to ask, but bloody forgot (even tho I had them written down!) DUH!
25 Replies
- Oh dear @Fraser - my hubby is 83 this year & is even more tottery than me!! LOL How I wish I could have the fortitude of your 101 year old friend!! AMAZING!! Sadly, I've had stuffed knees all my life (surgery on both in my early 20s) and stuffed hips & stuffed shoulders ... so not a good start - and that was before I was on AIs! :(
If I continue to improve, @melclarity - I won't want to go back on to anything! grrr - @arpie that's sounding pretty good for only 1 week! I know for me and the diary proved it, 6 weeks off Arimidex was so noticeable, it was unbelievable.! I think the thing is we're just wanting to find the lesser of all the evils to have a relatively good quality of life whilst on it.
If I could can it now I absolutely would, but admit uuuugh lol, after 1 recurrence too scared but then have been on Ai's for 8yrs and soooo OVER IT!!!!!
So keep writing it up and see how the next 3 go! Have a super weekend!! :)
x M - Yep, use it or lose it.
- Think positive about what an 80 year old might do. I'm organising a large lunch and the guest speaker, who lives in a lovely house with 17 front steps, which he pops up and down, will be 101 in December. Hope for us all!
- One week on from stopping my meds - and I think things are starting to improve!
Last night I was not woken up with painful hands. This morning, I can almost form a fist with my left hand (haven't done that for 6 months!) After manipulating my left hand 'straight thumb' yesterday that just wouldn't bend ..... I've got it 'clicking' in 2 movements to 'sort of bend' tho it takes effort and a bit of discomfort ..... so at least I can use it more paying uke, as it prevented me from doing some chords.
My 'general' aches & pains appear to have lessened - time will tell! I still look like an 80 year old as I tottle up & down the stairs & around the house.
Have a great weekend, everyone xx - @arpie wish I didnt have to work either but case of have to uuugh.
I was on tamoxifen for 4yrs and found it ok to be honest its just that i had a recurrence. I was then put on Arimidex in January 2016 after chemo til march 2017 so just over a year. Now 2yrs on Aromasin with 3yrs to go.
I was told some manage better on Arimidex and others manage better on Aromasin its a real case by case. Best thing is to find what suits you personally.
I agree with @iserbrown that its a little unfair .
Xx - Thanks for that - my Onc said she'd only put me on Tamoxifen as a last resort.
I agree, @iserbrown - and yet they are actively working on a remedy for men on hormone treatment to relieve THEIR symptoms of aches & pains, weight gain, depression etc ...... why couldn't they include women in the trial as well??
- Tamoxifen which involved being referred to a Gynaecology Oncologist and two surgeries (Tamoxifen induced) I did 3 years.
Femara which caused aches in places that I didn't know could ache, bone pain and sleep deprivation. I did 6 months on this.
Now coming up 6 months on Aromasin
Still got 6 years to go
Why is it the cure seems worse than the cause sometimes? Shouldn't moan as others are worse off! - Thanks @melclarity - I can't imagine me possibly working - so more power to you! I am just glad I was retired when I got it!
@iserbrown - thank you - were you ever on Arimidex at all? What were your other 2? Yes, if the aches & pains (which I've almost grown used to) is the only 'side effect' - I may well just have to put up with it in the long term! We'll see how it progresses in the next 3 weeks.
take care xx - @arpie
For me Aromasin is my 3rd AI and I am pleased to say it's the better one for me. I suffer aching bones (legs) but not as frequently and that's the only one Yay!
Here's hoping your 4 week break will help in determining if it's right for you or try something else
Take care
