I had BC in April 2015 , had a lumpectomy followed by radiotherapy and was given letrozole. I was already on steroids for polymyalgia . Rheumatology gradually reduced my steroids and by February this year I was off them but all the side effects of the letrozole really hit in . In terrible pain with joints and muscles. My breast nurse advised me to have a 2 week ‘holiday’ without letrozole and the aches and pains although they didn’t disappear completely I felt so much better.
My medication was changed to exemestane (aromasin) and I have just completed my first week but the aches and pains have returned. As anyone any experience of being on exemestane and are there any brands which have fewer side effects as aromasin ? I really thought I would find a difference with this different drug but the only change is that the pains are more in my joints on the left side and not the right !!!
Would love to hear from anyone who is taking this drug.
Hello ash
I have just finished over two and half years of letrozole and am now on exmestance . I find this one much easier to tolerate …less bone ache and no hot sweats.
I was told that it takes letrozole 6 weeks to completely leave the body …you have started a new one so could it be that temporary you have 2 hormones in your system interacting against each other.
The pills are only small but do have a lot of power .
It’s by Pfizer so don’t know as I have only been on it 8 weeks …
All the best and hope u settle down with it. Another good thing is it suppresses your appetite. I’m never hungry these days …lost a stone since being on it not complanning as I needed to drop a bit of weight.
Hope u settle down with tamoxifen …I remember getting a real donut waistline when I did 3 years on it at primary stage . Then I switched to Anastrozole for 2 years …
Well I have been on Exemestane for 3 years.i was originally on Pfizer brand But now I am on the generic version I feel like100. Over the past few weeks my leg muscles have been so sore. My feet are aching. I have asked to be put back on the pizer brand but the chemist just gives me what they can get. Have to take painkillers and rub arnica in which eases a bit. But torture.
Lucky enough I get my exmestance with everomus issued by hospital and still get Pfizer version. Stick out for the best …when I was on letrozole I got a horrible generic brand that made me ill once …they all vary …
I’m new to this forum, have had 2 lumlectomys and then mastectomy last May.
Radiotherapy and then on Letrozole which made me quite ill so changed to Exemestane since November lasy year.
Ok at first was so relieved to have easier side effects but as time went on they got worse, aches and pains in hands, feet head, neck and shoulders. Felt like a very old lady I’m 65 but was doing so well before diagnosis, found on mammogram I felt nothing, its lobular cancer.
I have been so weepy and depressed like a shadow of myself, feeling like how can I be like this for 5 years or more,
Then my eyes started to feel not right very red and sore with sharp pains shooting through which really worried me.
Rang breast care nurse who rang back qujte quickly sais had spoken to Doc and I shouks stop immediately and have an eye test, had eye test and have dry eyes so drops 4 times a day opticjan saud probably caused by medication.
Anyway to cut a long story short, saw Syrgeon lsst Friday who although had told me to stop rabs seemed to have forgotten and said none of my side effects were the Exemestane, I did argue a bit but was quite uoset at the way I was made to ferl like a moaner.
She said if I decide to take no medication thats my decision and quoted percentages at me. Or to do exercise I have joined the gym but sometimes just havent got he energy to go and new ache in calves…
Having read threads I know that I 'm not on my own but was so low when I got home. Been off the tabs for
Hello Ash,
Thanks lovely lady for my message on the other thread by the way.
In my opinion, work out what is most important to you. If it is to reduce the joint aches and pains, then maybe give tamox a go. It is supposed to be kinder on the bones etc as oestrogen is still circulating, although sone people seem to still suffer with joint pains.
As for the weight gain, then keep an eye on it and if it starts increasing and the only change is Tamox then you can reconsider your decision. My weight has shot up since taking Anasty so it’s not just Tamox!!
Tamox and the three aromatase inhibitors work in different ways, just as the exermiestane has a bit of a different action than letrazole and anastrazole. Reading through people’s experiences and the basis for continuing or giving up is very educational. Many individual factors seem to influence response.
By the way, I changed taking Anasty from morning to night and have just changed back again as I started to get the excrutiating leg cramps during EVERY night and not occasionally as before. Yet someone else finds taking them more beneficial during the night.
Just wondering also how people/Onco work out the percentage benefit? Is this just using Predict? Predict does not necessarily give a recurrence %, so how is that estimated? Mind you in the end, they are all just estimates.
I have decided that my impetus for stopping or changing will be if my hair starts falling out in chunks. Only so much you can take with everything else on top. We all have our limits!!
hello fellow exmessy friends. I’ve been taking this for a year now, having struggled with anastyzole. My joint pain is far less and I’ve lost a chunk of chunky me finally - thanks to fatclub. However, the last few months I’ve been having bladder problems. Frequency, discomfort etc. My GP has dipped and said no infection, no sugar. On one dip there was microscopic blood but clear on another. My GP and surgeon think it could be exmessy irritating the bladder, but I can’t find a link thread here. I’ve been referred to Urology in 2 weeks as a precaution. Anyone had something similar? X
Hi Ash & all
Thank you Soo much for your reply and best wishes I can’t tell you how much I appreciated the answer.
The worry of making g the right decision is terrifying, feeling so very unwell and down taking the tablets or trying exercise and no medication. Has anyone gone down that road yet.
Was reading all the leaflets that was given when first diagnosed concerning did effects of the area inhibitors and they all say speak to your BCN or Oncologist tell them if you are struggling and they will help you but that’s not happening, it’s such a big decision.
(Just a note apologies for the dreadful spelling mistakes in previous note was a bit teary when writing)?
I found the message when opening the forum by the Psychologist Dr Cordelia Galgut who counselled ladies with BC how different it was when she was diagnosed herself, very interesting and something I had mentioned at my apps with Doc as they really don’t understand the trauma we go through bodily and mentally it’s huge massive scary change in your life for us and our families.
My husband is very depressed at the moment says he felt so helpless when I found out … Finding it hard to be very understanding as I have always put myself last all our married life and feel for the first time I have to concentrate on myself.
Life’s just a bit sad at the moment sorry for going on thank you for being there Ash XXX?
Ash I found out on Exemastane I was leaking quite a bit (wee) was even using pads said to my daughter in law by the time 5 years is up I’ll be in nappies, sometimes you have to laugh.
But know I’ve been off it for 3 weeks it’s stopped !!
Defo think it was the tab that was giving me that problem xx
Long time no speak to ! I’m on exmestance ( with everolimus ) and I must say my joints are better than when I was on letrozole …I find though that if I need a wee …I have to go quite quickly …especially in the night ! It does seem to affect the bladder muscles.
I think all the hormones bring their own set of problems …I’ve done all 4 now. .tamoxifen, Anastrozole, letrozole and now this one …
Hello lovely Carolyn ? thank you for reply and Bonty too. I hope today a better day. I think the emotional impact of diagnosis didn’t hit me until about a year after active treatment ended and I ended up laid up with stress, anxiety and insomnia last Autumn. I do feel so much better now and have started to do 20 mins exercise each morning (building up in baby steps!), which has helped with weight, mood and fatigue. Either that or my body has finally accepted the teeny tiny pill’s power! I am hoping the bladder problems are tablet related rather than anything else. No leaks (yet!), but up every hour at night and never feel empty. Trying to keep on top of worries about cancer no.3 making an appearance! Guess it will take a while to trust this body again! Xx
PS Bonty if you haven’t read it, there is a good piece of writing worth googling about “after the treatment finishes then what” and also put “mountain lion and cancer” into a search engine. Both bits helped me and the former helped my partner xx
Just to reassure you I do at least 3 wee trips at night… tried not drinking after 6 pm, giving up caffeine etc etc …all the same results so it’s got to be exmestance …
Glad u loosing weight. .I find this pill does take away the appetite. .I have lost over a stone since being on it.
Thanks Carolyn. Feeling reassured. A bit anxious about tomorrow. I have a bladder and kidney scan in the afternoon and had a call from the hospital to book me in for cystoscopy first. Hoping tomorrow brings reassurance xx
Hi Janey 2
Thanks for the info I did read about the Monster in my fridge I think it’s in all my rooms at the moment but it did make me laugh, haven’t shown it to other half yet but I will. Best wishes to all in this club xx
Hi Janey2
So glad it’s good news on the bladder front !!
I am considering coming off the tablets feel like a shadow of my normal positive self , am having a break but will go back on think I am really too scared to stop completely even tho the statistics seem to make only a small difference, would I rather be here but achey and all the rest or not … It’s so hard but so glad you got good news, Fab ?take care xxx?