Exemestrane- Anyone taking this?

I will be taking this new drug have been on anastrozole for 6months but having put up with aching and stiff legs my wrists have started too now so time for a change.
Thanks Janet for the fact sheet :slight_smile:

Hi Kirstie

While you are waiting for some replies from fellow members I thought our Factsheet might be helpful. I have attached the link for you to download it:

www2.breastcancercare.org.uk/sites/default/files/bcc46_exemestane_factsheet.pdf

Very best wishes

Janet

BCC Moderator

Hi Kirstie,
I am taking it and get on much better than with Arimidex (anastrozole). But I had another period of Tamoxifen in between.
On Arimidex, I got trigger fingers and thumbs, permanently painful and getting worse. It started after about 6 months. On exemestane, I get an occasional twinge in the fingers, but it goes away. Again, this started about 6 months in.
At first I had quite extreme hot flushes, but they have gone now (after a year or so, but they went away earlier, I can’t remember when). I also have more sort of acne-like spots on my face. I have stiff ankles when I get up. I try to do a fair amount of walking despite this, and swimming, which is easier on the ankles.
I am really quite pleased with exemestane, but really looking forward to stopping!

Removed because of double posting

Thanks for your response Zeppa. I have to wait a week without taking any tablets, the first night I had a terrible headache I dont know if it was to do with stopping the drugs, was up and down most of the night what with hot flushes as well was not a happy bunny. I do hope the new drug improves things for me. Will keep you informed :slight_smile:

Thanks for starting this thread Kirstie. I toohave recently been taken off Anastrazole after bad reaction. Very painful shoulders, back and stomache aches, fatigue and recurrent utis. seeing my onc again in early August and am wondering what he might suggest for me next. Think Exemestane might be suggested as I am post menopausal. Useful fact sheet, thanks Janet.
I didn’t really have any s/ es when I stopped taking Anastrazole - more of a high as the worst side effects subsided and I stopped feeling poorly. Hoping that whatever comes next doesn’t make me feel so bad, as my quality of life was really poor before I stopped Anastrazole. Am aware though, that as I scored 8/8 for ER, I need to take something. Onwards & upwards, I hope!

thankor for the insights Zeppa and good luck Kirstie x

<address>Thanks Southcoastbeachgirl :slight_smile: how long have you had to stay off anastrozole? My wrists are killing today I have put some pain relief gel on. Will be interesting to see what you are given next, wish we didnt have to take these drugs. Never mind at least we are here to tell the tale. Keep me informed take care x </address>

Hi Kirstie have been told to take a month off it to get better before situation reassessed. I was on it for 3 months but got progressively worse s/es. I didn’t have any trouble with my legs on Anastrazole - just top half. Shoulders back and elbows worst. Sometimes wrists. Hope yours ease with the gel. Sending you a cyber hug x

Hi
I have been on exemstane for just over a year, I was on Tamoxifen for 2 years and changed to exemstane after a hysterectomy, I was just starting to get stiff joints when I was changed and this was slowly getting worse but it was liveable most days, I then hurt my back and was on strong painkillers and anti inflammatory tablets for over 6 months and now I only take pain killers if needed I find that my joints only ache occasionaly now or they ache if i do too much e.g cut fabric which can be a problem as I cut fabric as part of my job
I stopped Tamoxifen 1 day and started on exemestane the following day.
Hope the gel helps
Jennifer

Hi everyone
Started exemestane last thursday finally was a week and a half off anastrozole. too soon to notice any difference yet my wrists still stiff and aching also legs first thing I have also had more hot flushes but dont know if this is because of coming off the other drug. I am hoping for improvements in the coming weeks, fingers crossed. :slight_smile:

Hi everyone nothing to report really I think it may be still too soon I have taken around 12 tablets no noticable improvements yet :frowning: Still hoping :slight_smile:

Hello Kirstie I recently saw my oncologist for annual review and she switched me to exemastane (starting in 2 days)…[thanks for fact sheet]. I have had a very bad reaction to anastrozole, though this could be combined effect of chemo induced menopause plus anastrozole - double trouble. Been on Anastrozole for 2.5 years and ankles/feet and wrists/elbows/shoulders all stiff and very painful. Has required lots of steroid injections from rheumatologist just to be able to go to work. Gosh everything was fine before I was diagnosed, now feel like an 80 year old (I’m 48!). Also have given up s@x as way too painful - love life in the toilet, but cancer free, so can’t complain (right??). Good luck and keep us posted. My onc said it would take 2/3 months to rid body of anastrozole and feel affects of new drug.

Hi Plimsoll It sounds well grim what you have had to put up with why didnt they take you off it sooner? I do hope things improve for you, buit like you say will take time to get anastrozole out of your system. I had two friends who were also on anastrozole they both had bad effects one stayed on it for 8months she said after going on exemastane she went from creeping around like an old lady to dancing to the radio :slight_smile: I do hope this is the case for us too :slight_smile: she does have a little stiffness in her legs still first thing in the morning and when she sits for too long, but everything else has improved. Lets hope its looking good for us :slight_smile: Take Care

hi everyone just to update - was due to see onc today to discuss restarting hormone treatment after break, but he is off sick so have to wait til end of the month. From all you have said Kirstie & Plimsoll, exemastane seems a whole lot better than Anastrazole so your comments will help when I do get to see him. I can’t believe how much better I feel after a month off Anastrazole. Definitely got my mojo back - now slightly worried about going back on something else but know it’s an inevitable & essential part of my plan.
Good luck all - let’s hope we can all find a positive way forwards x

Hi Kirstie,

I was on Letrazole for six months to try to shrink my tumour, it did not work for me and the tumour was growing in size therefore I had to have a mastectomy in January of this year, since then I have been taking exemastane (have to take for five years).

At first I was getting terrible night sweats the bedding was soaking wet, I was so tired and wanted to sleep most of the day and yet had difficulty sleeping at night, one shoulder and one hip was aching and my hair is thinning.

Most of these side effects are abating and I am hoping they will disappear soon.

Hope you are feeling much better.

Regards

 

Wyn 

Well girls I’m back on this thread again… My onc put me back on the Anastrazole when I finally saw him in September. Not quite sure why as symptoms gradually built up again after initially seeming ok. Saw him last week for routine check and he has now decided to take me off it for good. I have had IBS like symptoms for about a month or 6 weeks and bad pain in shoulders, arms, neck and collarbone. I have another month off before going on Exemastane. Am hoping it suits me better as have been on painkillers 3 times a day since about September to cope with painful joints. Am hoping this will do the trick! Hoping everyone else on this thread is now feeling much better since it’s all gone quiet… All best to you xx