This is only to those who had a crap time on them, not those lucky ones who felt fine.
I’m having a gruelling time on AIs. Started on Letrozole, switched to Exemestane. I’m 16 months in, had a ten day break recently (because I thought I would just give up) where I felt “normal” again in my head although still very stiff and hot. Decided to try again as I’m ER8 and HER2+ and i just really don’t want a recurrence. My dexa scan was normal.
What I want to know is, when the 5 years are up and I can stop the meds (all other things being well ) will I feel normal again? At all? In any way? Will the clear head return as it did on my break or will it just never come back? Does the joint stiffness improve? And the constant overheating?
No one seems to be able to answer this so I’m hoping someone who’s in this position will stop by (although I guess if you’re in a good place post treatment you’ll be keeping off everything that reminds you). Anyway, thanks.
Read your comment and sympathise massively with what you are going through. So hoped to read lots of positive comments ……see there are no responses….. I’m hoping it’s because all the girls who have finished this wee b**** of a drug are all off these forums out there feeling fantastic and living their best lives!!
Thanks for replying. I’d started to feel like a voice crying in the wilderness! It seems a perfectly reasonable thing to want to know but no one can ever give an answer (which in itself is not very reassuring). Anyway, we wait in hope!
It’s hard work, I have found changing from brand to brand (daily) has helped a bit.
My brain has however left the building. No longer working as quite frankly you would not want me in any team. It is as if I have someone else’s head.
Like you, I’m high up on the scores so just got to keep trucking x
I did the full five years on Letrozole and finished in April this year. The side effects I suffered during that five year period have definitely lessened making me feel nearly back to my old self since I stopped taking it, but I wouldn’t say they are completely gone. Not sure if that helps but fully sympathise with anyone having a hard time on the drugs presecribed for breast cancer.
Thanks so much for replying. That’s reassuring. I am sure that menopause and ageing means you don’t feel as good as you used to but not feeling dreadful will be a real plus. I look forward to feeling less like a creaking 90 year old zombie!
Congratulations on completing the five years - a real achievement - and the very best of luck for the future x
Thank you for posting that very pertinent message, it is a shame there has not been much response.
I had a double take reading your message as my experience is virtually identical on this cancer journey.
65mm lobular tumour, Pr + Er 8 , no duct removal, good Dexa scan , mastectomy last April followed by radiotherapy & Letrozole for 3 months - terrible bone ache switched to Exemestane better at first but now aching again.
However I was recently put on Madafinil for ADHD as I did not want to take amphetamines & that has definitely helped the brain fog.
I’m very interested in one of the replies to your message about alternating my AI dose every day & am going to ask my Oncologist if I can try this .
Yes, the AI’s are far worse than I expected & I’m horrified by how much I have aged in 18 months - physically, mentally , visually . I was quite young for my age at 65 but absolutely not anymore.
Giving up the AI’s seems like giving up on life so I’m just going to keep going & remember how much worse my journey could have been.
Good luck to you too. I have definitely found the brand issued to correlate with severity of my side effects. I know the two worst culprits (I’ve had seven different ones in a year ) but the pharmacies are only allowed to issue the cheapest available so while one of them is presumably ‘on special ‘ that’s what you get, irrespective of how deathly and non functioning it makes you. Every month I’m shopping around trying to get one of the brands I can tolerate. It adds more stress onto an already miserable experience. I try to ‘save’ some of the ‘good’ tablets for holidays and occasions where I really need not to feel dreadful and use the bad ones when I’m just at home. I understand the value for money issue but it really means ‘Moving on from cancer’ isn’t made easy.
Do you mean Rivopharm Exemestane maybe better than Accord Exemestane?
If so would share your findings on that with me please? I really want to minimise the side effects if I can & make the most of this new (in fact rather old), body I seem to have now.
What do you think of alternating Exemestane with Letrozole on a daily basis?
Not really! I just know what the effects are on me. I’d never recommend any course of action for anyone else because everyone is so different. It’s a case of taking the prescribed tablets and keeping track of brands and their effects, if any. What I tolerate well will differ from what works best for you. Unfortunately, even when you know, you can’t guarantee getting hold of them. As I said, it tends to be what the pharmacist is prepared to pay that month. If you know what really upsets you, you can ask your GP to put a note on saying NOT X brand. But again, the pharmacy will just say that’s all they can get and give you the prescription back to try elsewhere. They are all on such tight margins (is my understanding). Meanwhile the patients just have to be grateful they can get hold of anything at all and suck it up. It’s a NHS medicines funding system issue, not the fault of prescribers or dispensers. Unfortunately.
Hi I Ductal cancer 6 nodes positive ER&PR Positive - I’m 12 years on from my cancer. I just had a serious mets scare (I’m fine!) which is why I’m logged in again and just saw this question. I had chemo, radio, wide lymph removal. 9 years on hormone drugs.
I took Letrozole for2 years - Extramene for one year and Tamoxifen for 6 years. 9 years in total. The Letrozole and Extramene both caused terrible joint pains and pain in my feet, it made it feel like I was walking barefoot on cobbles, so painful. Eventually I had to stop, I could hardly walk, I was just crippled by the pain in my joints, my hands etc. My onc suggested Tamoxifen, and that was more manageable for me. So I took Tamoxifen for 6 years. No recurrences of cancer, a few scares. I was always told I was high risk as I had so many nodes affected.
When I came off hormonal treatment after 9 years, I felt better within 2 weeks. My hair started growing back much thicker, I had more energy. I felt younger again. I felt overall fitter and happier than I had been for years. I just had more energy and it was easy to be active and more like my old self. So yes, great result, it’s nice to be back
I’m still glad I followed the advice and took the drugs. I’ve had friends that didn’t and their cancer has come back. I had the worst prognosis but I’ve made it through, and made it through without a recurrence.
Oh thoughtful, what a lovely response! I’m so glad you’re feeling like you again. 9 years! You deserve a medal. I want to wish you all the very best for a long and happy future. Thanks so much for taking time to reply x
I’m finding them partially difficult to tolerate too.
I started on letrozole but felt flat in mood with anxiety like I’ve never experienced before . I changed to anastrozole and found the joint stiffness quite debilitating . I am now on exemastane ( for 2 months) bone stiffness is gradually getting worse in feet and hands in particular . When trying to get out of a chair - I feel like aged years . Pain discomfort and stiffness are affecting my quality of life . My hair is thinning too, worse side affect for me on them all has been varying degrees of brain fog and memory issues . I have been off work as I can’t function like I used to in my team . I feel so ‘slowed down’ mentally . I am considering retiring early , I can’t really afford to but feel I have no other option and that is worrying me. I have had breaks in between changes of meds and started to feel better . I am also ER 8 and PR8
I can only empathise, jasp. Some of us have the miserablest time on these, despite following all the advice on exercise, yoga etc. That’s why I started this thread because I really wanted to know IS THIS GOING TO END? I can’t get over how no professional I’ve asked this question to can give me an answer. It seems a very reasonable thing to need to know!! So grateful to the women who’ve replied here and given me hope.
Thanks for starting this thread as I am also interested in this. I started Letrozole in January 2024 and swapped to Exemestane May/June 2025. I started a thread about the Letrozole and the other medications I was taking to help with side effects, so many people have read and or commented on it. I found Exemestane was better but as time has gone on the hot flushes got worse, the bone pain wasn’t just after getting up in the morning or after a long car journey and brain fog was horrible. I was highly positive ER8 and HER2+, so at first the team thought the Herceptin was causing the problem. When I took a long break at from Letrozole I did feel somewhat better.
I have read that Exemestane works differently to Letrozole and Anastrozole and permanently binds to the aromatase. https://www.youtube.com/watch?v=FUYG8VmY6TM I think it was on here. There was a question about it being irreversible and the response was that they hope you make more aromatase after stopping.
That gives hope that the side effects will wear off. However over time we are all aging and things deteriorate with age. I suppose it depends at what age you start the medication, your health before cancer and how well you can exercise and keep healthy after diagnosis.
I have 2 1/2 years left of my 5 but told they could suggest another 2 depending on the newest data. I also had two separate tumours one in each boob, with genetics being negative and no family history. So I will try to do everything I can to prevent a recurrence but as with getting cancer we never know. I breastfed both my children (18 months in total) and recently saw a research project saying that you are 14% less likely to get breast cancer if you do. Well that didn’t work for me!
From reading the forum for several years, it does seem that many people will drop off as time goes by and reappear with a recurrence or spread. There may not be many active users that have finished their 5/7/10 years. But let’s hope there is.
Thanks NB, it was great to read your comment. I also breastfed my two so yeah. Bit annoying when you feel you did your bit (see also not smoking, exercise, healthy lifestyle etc) and you’re still having to deal with cancer. Such a random b*****d innit
It’s good to hear positive stories from people about coping with the side effects and people who’ve managed to stay the full course (absolutely no shade on those who don’t, we’re all dealing with it as best we can and making choices we can live with). The two ladies who’ve replied on here to say they’re out the other side of AIs have given me hope. I’ve also changed to a different pharmacy who seem more responsive to my brand issues, although only time will tell what they dispense! All the very best to you x
Hi I haven’t been on the forum for some time, really struggling with taking Anastrazole, is suffered with bad MH and I’m just getting stronger, really worried I will go backwards. I was supposed to start last year but I keep putting it off. Low mood is just something I am scared off. I was triple positive so had a lot of additional treatment. Thank you and words of encouragement x
Sorry to hear this @debly123 . It may be worth a call to your breast care team. Also phone the BCN nurses on 0808 800 6000 m-f 9-4 sat 9-1 they have more time to talk and have loads of experience. I hope you get some help, it’s not easy, I get it. Having cancer isn’t great for mental health and I’m sure the lack of oestrogen from aromatase inhibitiors have some impact.
) will I feel normal again? At all? In any way? Will the clear head return as it did on my break or will it just never come back? Does the joint stiffness improve? And the constant overheating?
) but the pharmacies are only allowed to issue the cheapest available so while one of them is presumably ‘on special ‘ that’s what you get, irrespective of how deathly and non functioning it makes you. Every month I’m shopping around trying to get one of the brands I can tolerate. It adds more stress onto an already miserable experience. I try to ‘save’ some of the ‘good’ tablets for holidays and occasions where I really need not to feel dreadful and use the bad ones when I’m just at home. I understand the value for money issue but it really means ‘Moving on from cancer’ isn’t made easy.
