I am on Exemestane prior to that I was on Letrozole which gave me joint pain quite bad. My oncologist switched me to Exemestane which is slightly better but I am suffering with joint pain in my knees, hips and I feel really tired. I finished my treatment last June and have been on Letrozole/Exemestane since July last year.
Is it normal to suffer so much pain from taking this medication and to feel tired as well. I have had blood tests to rule out anything else relating to my tiredness and it has come back all clear. My CNS said about taking a break from Exemestane but I don’t want to I want to keep taking it for the 5 years to try and ensure the BC doesn’t come back. I am trying to not let the joint pain and tiredness get me down and carry on with life as normal as possible but every now and then I do get a bit fed up and down. I am taking Nurofen plus and paracetamol. I did ask the doctor if there was anything stronger she could prescribe and she said co-codamol which I already take as and when the pain is really bad but I am not keen on taking that all the time she also recommended Tramadol which I definitely don’t want to take. I am doing Pilates and swimming regularly to try and build strength up.
I just wanted to check with other people if it is normal to have pain and feel tired.
I too started on Letrazole and switched to Exemestane. The pain improved but it still felt debilitating. I felt 20 years older!
I spoke with my BCN who suggested taking a break but then said, try omega3 cod liver oil first. As a vegan, I did a lot of research and found this:
Troo Health Care Vegan Omega 3 Algal Oil
1332mg Per Serving - Provides 732mg Omegas Including a Minimum of 400mg DHA & 200mg EPA - Sustainable Plant Source Omega Oil Softgels - 90 Capsules - UK Made
What a gamechanger! They have made such a massive difference to my life! I have recommended them to lots of women, and men, who now take them. I wish I was on commission, haha! I buy mine from Amazon.
I hope it helps you as much as its helping me. Let me know if you find it effective. xxx
I am a little wary of taking alternatives as I had a diagnosis of Grade 1, ER-positive (ER+), PR-positive (PR+), HER2-negative breast cancer, and it was recommended to be very cautious with natural supplements as I was told many can interfere with hormone therapies (like tamoxifen or aromatase inhibitors) or possess estrogenic properties that might feed the cancer. The alternatives you take are they okay to take
I’m the same on Letrozole . My knees hurt when using stairs and especially getting out of bed my Achilles are so tight and legs hurt. It doesn’t help that also have peripheral neuropathy in my feet. I’m going to try Exemestane instead but not getting too excited as still not got good reviews on here​
It sounds silly but I found Letrozole quite a “harsh” drug but when I started taking Exemestane it didn’t seem as severe as Letrozole and my oncologist did say if that didn’t work I could try another drug but to be honest I think they all have very similar side effects some worse than others so I didn’t want to keep swapping. I am going to persevere with Exemestane and I have emailed my oncologist about Troo Health Care Vegan Omega 3 Algal Oil and if he says it is okay then I am going to give that a go. My Breast Care CNS also said I could take a break but again I don’t want to.
Ive been on Exemestane for 12 months. On the whole, I feel like the side effects have got better, either that or I’ve come to manage them.
Joints are a bit stiff for a minute or so after resting i.e. sitting or lying down. Hot flushes are normally late evening when reading in bed. I try to get up and move around often, even if it’s just to switch on the tv, and I keep the bedroom cooler. Two little things that have really helped in my case. I had a bad spell with my fingers cramped and painful, after taking a different brand tablet, which I now refuse to take and they are now fine.
My Onco says I will be on it for 5 years, then move onto letrozole and I’m not looking forward to that. I feel quite privileged to be on Exemestane as a first choice, and if I continue as I am now, 5 years will definitely be achievable.
Here’s the “but”……unfortunately some ladies struggle regardless of which hormone based therapy they take or brand. I personally believe if your cancer is ER+ this is the most effective treatment you will be offered to reduce the risk of recurrence and science backs this. You really have to try it, and see how you get on with, as we are all different.
Lastly as noted on this post (and others), supplements and other alternatives can have a positive or negative effect. Also take into consideration any other conditions or medication you may be taking. Do your research and speak to a professional for advice first
Thank you for your post that was really interesting and full of useful information. I am not sure whether I have to go onto another drug after the 5 years nothing has been said but that is something I am going to raise when I have an appt. I just want to give the best possible chance of it not returning and if it means putting up with some discomfort then I am not going to have a break. I try and not let it stop me from doing stuff and I do find if I have been sitting down for a while at work or when I get up in the morning my joints are painful and stiff but once I have been walking about it eases. Also I am hoping as we get warmer weather it will ease because I also wonder if the cold makes the stiffness and pain worse.
To be honest with natural supplements I didn’t realise that they can contain ingredients which may be contra indicative to the medication it was only when I took some supplements to one of my appts the CNS said I couldn’t have it and told me what to look out for. It is such a minefield again I didn’t realise I couldn’t have injections in the arm where my lymph nodes were removed I found out when I went on the Moving Forward course.
Why do you feel privileged to be on Exemastane? Is it more expensive than Letrozole. I have just changed to Exemastane as the Letrozole was giving such bad leg muscle aches and pain. It’s early days but I’m hoping it’s not as bad.
I believe Exemestane is more expensive. It seems from reviews I’ve read, most oncologist use letrozole or anastrozole as their primary choice. I started on Tamoxfen for a short spell prescribed by a temp oncologist. When I saw my normal oncologist he said I would better on Zoladex to ensure I was put in menopause and Exemestane. I’m not sure what I may have said or whether an existing condition influenced his decision.
Exemestane has a steroid element, which stays in your system longer so has longer term benefits. Some people say the side effects are better and joint pain less. I don’t how true that is, as I have no comparison, but worth a try if the alternatives have been a bad experience.
Hi smurphy, I’m glad there is an improvement, which hopefully will build. I think it’s worth trying anything, if it safe to do so and is affordable, for a better quality of life. Xxx
Hi, I’ve been on Exemestane since January, after being on Letrazole for 18 months. I had lots of side effects on Letrazole but had reluctantly made my peace with it until I started really struggling with fatigue in September last year which really robbed me of any quality of life.
I think my hot flushes are similar on Exemestane but my joints seem better than on Letrazole. After initially getting worse, the fatigue seemed better, but seems to be increasing again over the last couple of weeks
I’m also worried about the long term effects on heart, brain, bone and sexual health. I’m hoping to speak to my consultant in a few weeks about what my absolute risk reduction is with AIs as we’ve not had that conversation and I want to better understand what the pros and cons are. Has anyone else had that conversation with their consultant? If so how did it go?
it works out for both of us. I’m not stopping the tablets as I need the oestrogen gone!!
Xxx