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arpie's avatar
arpie
Member
7 years ago

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!  

25 Replies

  • @arpie yes I think give it a good 4 weeks, I did 6 weeks and that was a good indication of whether there was a difference for sure! I suffer alot of hot flushes on Aromasin eeeek. I do wonder now though that pain and stiffness is in fact a combination of things for me. Its absolutely the AI, but its the lack of oestrogen, side effects from chemo have been bad also. 

    Im back into my 2nd year full time and its soooo hard! absolutely, Im on my feet all day I'm an Education support that manages other ES and deals in behaviour management due to my special ed background. Its challenging and I have to get off my feet when I get home by 4.30 every day. 

    All we want is quality of life, I agree there are others with loads of symptoms and I dont say much about it really because just have to get through. 

    Keep a diary and see how you go, I do think you'll notice some change though. 

    Have a super weekend :) 
  • @melclarity  Thanks - I am doing OK.  I am a week in today from stopping Exemestane & the pain at night in my hands has lessened (not waking me numerous times as had done previously) but the general stiffness & pain is still all there.  I still walk up the stairs like an 80 year old  & totter around the house .....

    My left thumb will not bend at all (without forcing it with the other hand) which is really weird & I can't form a fist.  Before AIs it was fine.

    Hoping things will improve more in the next 3 weeks.  I am not keen to change to Anastrozole/Arimidex if it will give me a heap of hot flushes etc .... I had a doozy yesterday pm - one hot flush after the other (after not having any for a month!!)  Weird.  I was hoping I was 'over them'!

    In the whole 
    picture - I am 'well off' compared to so many others with really debilitating side effects - especially those who are still working as well & have to put up with it on top of all that!

    Have a good weekend  xx
  • @arpie I hope you are ok, are you trialling 4 weeks off Exemestane? how are you feeling? M x
  • @arpie I have had a break from Aromasin and I also had a break on Arimidex for exactly those reasons. In Feb of 2017 when I had my mastectomy/recon my Onc said to come off Arimidex and keep a diary for 6 weeks. I did do this and it really was a big difference in pain. So he switched me off it to Aromasin, they are very similar so he said there may be no difference. I think Ive learned to put up with the pain, but I do sometimes have a break for 4-6 Ive only done it twice though, then guilt gets me back on it. I also dont like that its steroidal whereas the others arent. So I only now have 1 I can go to and thats letrozole. 

    I had a recurrence at the 4yr mark on Tamoxifen so my surgeon said to throw it in the bin uuugh! so I will switch one last time but I only have 2 years left. mind you Ive been on medication now for a total of 8 yrs due to a recurrence at 4.

    Side effects are pretty bad but Im trying to manage them as best as I can.

    Cheers, M
  • @arpie think you meant tamoxifen has a slight risk of uterine cancer not cervical cancer