Thank you @WritingOurLives for your lovely response.
Golly - a lot has happened since I posted that a few years ago.
I switched back to Tamoxifen as I just couldn't tolerate the pain or discomfort the Exemestane was giving me. This was an acceptable decision and was discussed with my oncologist at the time.
Life has been going swimmingly ever since. But this year, I have been stopped in my tracks once more. My cancer has returned sadly and is incurable. I start to wonder if that was my fault for not persisting with the exemestane. But honestly- I just couldn't tolerate it. So I guess it was a trade off between the pain and discomfort vs a reoccurrence. I obviously have my answer now.
However, I am now on new treatment, injections into my bum (monthly) & tablets every day. The tablets come with their own side effects and I'm trying to manage them but struggling in part. The new treatment is a whole new ball game and I will probably post about it soon.
Thank you again and best of luck with your treatment and hope you still get to exercise lots. X
I appreciated your story as an active person, and the impact of Exemestane. I took Anastrazole (and I see someone else in this thread gave it almost the same name I did “NastyZole”).
I’m an active person at 67 with no family history of arthritis or debilitatingly painful knees, and a younger sister who at 64 is running 9 miles a day 3 times a week.
I took Anastrazole for 15 months, and stopped because I had been getting bilateral rashes for a month, including terrible rashes on my eyelids. Once I stopped, the rashes stopped, but soon after that I went for a run, and a day later had knee pain in both knees, excruciating pain in one of them to the extent that I couldn’t sleep and couldn’t get comfortable even with lots of pillows strategically placed. AND, I could barely walk for the next month and a half.
Meanwhile, my oncologist wanted me to switch to Exemestane. I haven’t done it. I decided that leading an active lifestyle pain-free is more important to me than reducing my risk of breast cancer recurrence.
If and when cancer returns, I will take Exemestane. In the meantime, I don’t want to accelerate aging of all of the cells and organs of my body and I want to be active as long as I can.
Thank you again for your post. And good luck to you! I hope you’re back running and feeling great.
Hi I’ve been on exemestane and zoladex for 4years and I now understand pain in my knee back hip, I just put it down to cycling and walking,but cheers at least I hope when I finish treatment I may not ache so much.
If a doctor tells you that " it reduces...chances of recurrence by 50%", you must ask " Fifty percent of what?" for the statement to make any sense. In my case (going by the figures on https://breast.predict.nhs.uk/predict_v1.2.html) it should indeed reduce my risk by 50% - from 4% to 2% over 5 years and similar for longer durations. Obviously it's true that it could reduce risk by 50% but, equally, you could say that it reduces the risk by 2% - it depends on how you look at it.
I haven't started an AI yet but, in general, the best way to to minimise your risk by your diet is to lose weight and to (virtually) give up alcohol as well as changing to a predominantly plant based diet, organic if you can afford it.
I'm on exemestane and my doctor says that it reduces my chances of recurrence by 50%! I would be interested in seeing some independent studies on what the risks actually are, as we all need to know these risks before making decisions about whether to stop the drugs or not. Having said that, all the doctors can do is rely on statistics. What the actual risk to any individual patient - what YOUR actual risk is... nobody can say. I was on Anastrazole first and then the pain and fatigue got so bad I switched to Aromasin (exemestane). It's better, but certainly there are strong side effects with all these drugs. Those who go off the drugs live in fear of recurrence. Those who stay on the drugs live with debilitating side effects. Is there a third option? Can we stay on the drugs AND regain our quality of life? Doctors can't do much about the side effects - my doctor had very little advice to offer except more drugs like pain relievers and anti-depressants. No thanks. So what can WE do to help ourselves cope better? This is what we should be sharing with each other. Does a certain type of diet help? Losing weight? Exercise? Any particular supplement helpful? Herbal remedy? I find that going mostly vegetarian and giving up dairy has helped. Evening primrose oil helps with hot flashes. Not saying this will help everyone. But let's list some options!!
I finished my treatment (chemo & radio) I’m Feb & had started Exemestane in Jan, along with Zoladex & 6 monthly bone infusions. 2-3 months in I became quite ill on the Exemestane, could hardly walk, pain all over from neck down & was vomiting everyday. BN told me to stop it & 2 weeks later I’m much better! Seen Doc at Beatson today & due to start Tamoxifen so 🤞🏻 I’ll be ok on that. X
I have been on 4 different type of hormone tablets the side effects seems to have got worse.at the moment I'm on Exemestane and I could cry in fact I did this morning and I'm not a weak person.
I can hardly get down stairs or up, my wrists are so painful I can hardly lift a kettle, my knees are so stiff and painful it's so debilitating, I have done nursing all my life the last 13 yrs working at our local Hospice, i know I'm 66 was still working have now decided to give up work as I'm struggling so much.
I have read everyone's comments and looked at the percentages if I carry on taking them, i have decided to stopped and try to get my mobility back so i can enjoy life again.
I know this is an old thread, but this is exactly where I am at the moment. I had hand problems with Letrozole for 2 years & finally switched to Exemestane 2 months ago. I immediately got different hand pains PLUS problems with one wrist and excruciating knee pain in both knees. I'm only early 60s but my quality of life has plummeted: I can't walk without pain. I have problems getting up & down stairs. I'm worried if things get worse, I'll be unable to do anything with my hands.
I'm so fed up with it today that I've decided to stop taking the Exemestane. I already take the highest dose of anti-inflamm's I can & I do Pilates - but I'm close to immobile. (Thank goodness it doesn't hurt at all to drive, but wherever I go I still can't walk easily!)
Can anyone give any more info ion their experiences with Letrozole & Exemestane, please? Do the side effects go completely when you stop? Should I give it more time? I can't take Tamoxifen so the only thing left seems to be Anastrozole or going back onto Letrozole.
Oooh, don't know how I missed this, as it's right up my alley!! Had been on anastyzole for 2 1/2 years, got so fed up with back pain & worsening osteopenia that I changed to extramessy (please excuse my names, but tis how I feel) 6 months ago. Since then have had a second trigger thumb, and now such painful hands haven't even been able to type, so saw my doc yesterday and have switched back to anastyzole. Didn't go through hospital as it seems impossible to get to see the onc (another moan, sorry). My back pain and now my hands are actually down to osteoarthritis, so doc sending me off to have some sort of steroid injection in hands. I take 20mg amitriptyline at night, which gives a good night's painfree sleep and has a bonus effect of lessening the backpain during the day - but did nowt for the hands. Doc didn't think the extramessy was causing the handpain, but I didn't like the fact that it is a steroid, also is 25g and not 1g like the anastyzole (although, again the doc said that shouldn't make any difference). And I have put on shedloads of weight. Grr.
Main point I want to make is that you shouldn't really have to put up with a lot of pain - hopefully you have as good a doc as I have, and they could sort out ways to help you.
Oh, also I found that the Accord brand of anastyzole was the best of a bad bunch - the different brands did give worse back pain, so try a brand for at least 2/3 months, then try another if you're not happy.
Hope you all find something to help. xxx
I have had identical problems on (first) Anastrazole and then Exemestane - did you change to Tamoxifen
and is that better?
Hi Pod and others,
I started on Anastrazole which gave me aching hips so now on Exemestane which if anything is worse.
I am loathe to give up but it is very painful, has anyone found a way to manage?
I wondered about physiotherapy or accupuncture.....
That's useful to know.
My sister is an oncologist (but not my oncologist) and mentioned that Tamoxifen is less effective than Exemestane. Until I get an appt with a hormone specialist, I don't yet know which is the best way forward. I would like to go back to Tamoxifen but I've got to weigh up quality of life vs the chances of recurrence. I don't know what the figures are (% of recurrence) so I'm in the dark at the moment. But interesting to read that you've mentioned it's 1-2%. Whilst none of us want a recurrence - 1-2% seems quite low?
At the moment - my quality of life is driving much of my thinking as I can't bear to be in so much pain.
Thank you for your comments
I've experienced similar symptoms on exemestane and have now stopped taking it. I started on anastrazole but experienced joint pain with that so the oncologist switched me to exemestane, but my symptoms worsened and I developed carpal tunnel syndrome plus stiffness in my other hand so I could barely lift anything. I took myself onto a3 week break which has been heaven, as all the symptoms gradually decreased and I felt fairly normal again. I have been back to the oncologist who is going to start me on tamoxifen shortly. The disadvantage to tamoxifen is that the benefit is not as great and I will lose 1 to 2% benefit, (meaning my risk of recurrence is now 1 to 2%greater) but hopefully I'll have better quality of life and will be able to get fit again after a year of treatment. I hope this helps.
After I'd finished treatment in 2014 - I was put on tamoxifen to take everyday. I was doing ok on this with no side effects.
But during 2016 - my periods started coming back, so I was swtiched (just before Christmas 2016) to something a bit stronger...Exemestane, together with monthly injections of zoladex. At the time the Doctor said Exemestane can cause joint pain. But I was their hands, so thought I'd give it a go.
I am quite an active person and regularly go running each week and play netball. Up until about 3 months ago - I was doing ok and no visible side effects, apart from maybe some mild hot flushes (or warm waves as I like to call it !). But one day after a run - it hit me and I had excruating pain in my hip and could barely walk up the stairs or even turn over in bed - it was that bad. At the time, I thought it was just down to the running, so rested it for a few weeks. The pain subsided a bit - but never went away. Each time I went for a run - it was just too painful and one day the pain literally did stop me in my tracks. I actually stopped half way through a run due to the pain but managed to hobble my way home.
It was just too much and the timing of the pain was just too coincidental having only switched just over 6 months ago. Running has never given me this much pain. So the penny finally dropped - it had to be the Exemestane. I rang the nurse and she identified that it was the Exemestane that was causing it.
I have temporarily taken myself off it as I just couldn't bare to be limping around any longer (and the thought of being on it for 10 years is just unthinkable).The discomfort is much better now thankfully (although not completely gone). But just to clear - I haven't permanently stopped the tablets (just until another way forwrd can be found). The zoladex inections are keeping my oestragen levels low too, so I'm ok for now. I stopped it as a sort of experiement to see if it really was the Exemestane that's been causing the issues - and it clearly is the case. I have been in excrucaiting pain whilst on it, and felt pain even in my feet and my spine. So its almost crippling me. I know some people can live with the side effects, but I'm not doing so well with it, so have to do something about it.
I am hoping to make an appt with a hormone specialist in the next couple of weeks, to formulate a plan of action, as the Exemstane is affecting my quality of life.
So just wondered if any of you ladies have experienced similar side effects from it and what you did about it ? Obisouly each case is different - but just wanted a general feel about possible options available to me.