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
- Yep - your thumbs sounds just like mine @kitkatb - Yep, it really hurts - numerous times a day too! I can really sympathise with you! I tried a set of pressure gloves last week at thredbo - and hated it! Probably too tight!
I have used a thumb splint in the past (9 years ago) when the pain flared up, but i still had full use of the thumb. Just now, it is impossible to use it at all!
Hope you have a good weekend xx - My thumb is the one that really gives me grief and a lot of pain too @arpie It literally pops in and out of the joint especially first thing in the morning. Its like you wake up and then big girl knickers on to actually try to bend it as you just know whats coming. Then its like Click, Pop and awwwh shit that one hurt. Grrr. Does any one splint their thumb at night at all or put a pressure glove on. Femara truly does suck but will stay with it as alternative doesn't bare thinking about and I do feel blessed they found this disease early and got on top of it quickly. Have a good weekend everyone. xo
- One of the brand names is ostarine and there is a lot about the drug online if anyone is interested
- @Sister put up some promising new treatment that might be worth Er+ people asking their oncologists about as side effects are much less.
https://nbcf.org.au/19/drug-shows-new-promise-breast-cancer-treatment/
The drug rug is in use for osteoporosis and apparently body builders have used it for sometime. - Oh yes put in 2 years on Tamoxifen
- Many thanks for that, @iserbrown - I BET she is happy!! Good on her for sticking to it for 7 years!
Have you been on Tamoxifen as well? I think it would be the hot flushes that I would hate - having had 5 years plus of them back in my late 40s. I had 'some' on Exemestane, but not all the time (only in the final 2 months before my break.)
I wonder if, when we finally get 'off' the meds - if our bodies WILL return to 'normal'? My left thumb didn't become less stiff or 'triggery' at all during the 4 weeks .... I really thought it would settle a bit! Grrr It really is the thumb I would prefer to be 'ok'!
As you say, fingers crossed!! - @arpie
If you have to try Tamoxifen you may find it a little more suitable. I mentioned in an earlier post that I have a friend who has just completed 7 years on Tamoxifen. Her Oncologist set her free! No need to continue on it! No more! She's pretty happy about that!
I'm on my 3rd AI which is Aromasin and my body has settled. Bones still ache but that's nothing compared to what felt like a full deck of side effects previously.
Fingers crossed it stays that way.
Hope you find your better option soon.
Take care - So my 4 weeks is up & I've thoroughly enjoyed a diminishing level of pain, tho my trigger finger & associated pain, continued. Most of the time, tho, I just wasn't 'aware' of being in pain 24/7 anymore!
However, the holiday is over now & I am starting on Anastrozole/Arimidex tonight. Has anyone taken Ariana before (another generic brand?) Initially the chemist was going to give me that brand .... but I preferred to go with the 'known one!
My Onc (I think) will be surprised if I don't get side effects almost within a week!! She has said that if it becomes too uncomfortable, to let her know & we can stop it, then try Tamoxifen (last gasp, as I'll have run out of options!!)
My Rad Onc last week said that, given just the 1% 'less chance of recurrence' - it could be worth coming off the tablets altogether, given the low quality of life, on them! I'll see how I go with these tabs ..... make the decision if/when it happens.
What is your story with Anastrozole/Arimidex? - @arpie (BIG SIGH) this is the trap eeeek!!! great to break and feel normal but then feeling torn. x M
