Stopping Aromatase Inhibitors?

Hi, I wondered if anyone has ever come off their ovarian suppression and Aromatase inhibitors entirely and been okay. There’s too much to talk about as to reasons why, but needless to say, it’s become intolerable and I’ve now lived with hormone suppression for 7 years now, Aromatase inhibitors for 2 of those. I am 43 now and feel so bad day to day I can’t live and am even now considering early retirement (I know, crazy isn’t it?) what I can do mentally and physically is decreasing day by day I can’t even be bothered to type this post but am doing it out of desperation for positive stories.

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I hear you!! I was taking Letrozole following my mastectomy in January 2021 and had a similar experience with horrible side effects. I asked for help to manage the side effects from my GP and they referred me to a menopause specialist. Following the initial discussion with the specialist they contacted my breast team to find out how much benefit I was actually getting from taking Letrozole. The results showed the drug was cutting my cancer risk by 1.4%
It was not worth the pain and stress of taking the medication, so I stopped in May 2023. I try to keep a healthy lifestyle, no alcohol, eating a balanced diet and regular exercise to lower my risks. I started to feel better within a week of stopping the medication. Maybe you can speak to your breast team and get them to provide you with the information I had so you can make an informed choice. I hope you can find a solution that helps you have a much better quality of life. Xxxx

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Thank you for that. I have spoken to my oncologist now and pleaded with him
That I have had 7 years of hormone treatment now (2 of AIs and ovarian suppression) and if I go in another 8, I’ll have been on hormone suppression for 15 years by the time I finish, he has agreed to aim for the 5 year point of ovarian supresssion, so I have another 3 years to go now, I just hate it. Life’s not worth living on it. He’s suggesting SSRIs which I’ve always resisted, did they suggest antidepressants for you?

I had taken antidepressants for years before I was diagnosed with BC. Incorrectly prescribed because I wasn’t depressed, I was peri menopausal. I had stopped taking them a year before and didn’t want to go back down that road.
Do you have the information to tell you the benefits you are getting from the inhibitors? Obviously, if you are getting more benefits than I did, then you need to be given different options, but it’s worth asking.
Also, if you do need to continue to take the medication, ask to speak to a menopause specialist. I firmly believe each Breast team should have one included in their team, but this is not the case, so you may need to be referred, but they should be able to help you find ways to manage the side effects. X

Hi, thank you for your reply. I am on the floor today, as most days really, I don’t usually like to use the forum as I always see things I don’t want to see, and I don’t like worrying other people either, but I get more and more desperate everyday. I’d love to do what you’ve done and try to go back to who I was in a way, it’s a life sentence and I think everyday what’s the point in any of it now my life is ruined. I only have my partner for support as my parents can’t/don’t cope and the Macmillian nurses are not any use to me, they scare me more than anything and the only person who truely knows and the only person of any use is my Oncologist. I always felt that a menopause specialist deals with ‘normal menopause’ not this artificial hell. I hope my Oncologist will call me today/Monday. They don’t tend to tell me anything in percentages anymore, they once told me I had a 2 in 5 chance of recurrence, which was a 3 in 5 chance of it not obviously! and yet it came back because I hadn’t had chemo (there was ‘nothing’ in my lymph nodes, turns out there was and no one knew). Obviously I had chemo the second time, but I stupidly thought that once that was finished that I’d somehow have a life again, but I don’t. everyday is the same, I’ve never taken antidepressants and I am scared to put anything else in my mouth. Everyone is different obviously, but how much better you are shows the medication is doing all this. It’ll never be over all the time I’m on it, in fact, I think it’ll just never be over!

I am so sorry to hear how you feel. It breaks my heart that we go through breast cancer and then the reality is that we continue to suffer long afterwards. Please please please ask for help. You shouldn’t be feeling like this. Maybe the nurses on this platform could offer some advice? Sometimes asking the right questions help.
Sending lots of love and strength xx

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I was taking Letrozole for a year and the side effects were hideous and I also felt like stopping. I had a 6 week break and I’m now trying Anastrozole and so far it seems much better to tolerate, have you tried a different one?

Hi, he said they all have much the same basis so it wouldn’t be worth it, plus Anastrozole has some really good findings recently in research so it seems the best AI. It’s the depression, headaches and dizziness really which are the worst (and the cells in my eyes which no one knows the cause of - an eye doctor said ‘premature ageing’. I think suppressing oestrogen in any way would have the same affects. To be honest, I think the biggest problems have been zoladex and prostap, as my ovaries are not meant to be being suppressed. The way I describe it is that it’s like someone doing time in prison for a crime they didn’t commit, they lose all that life.

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You have my sympathy and my admiration for persevering so long. I survived surgery, chemo and radiotherapy and was then automatically put on Letrozole as seems to be the case for so many women. I abandoned it after six months as the life I was forced to lead bore no relation to the person I am. Stabbing pains in limbs, difficulty walking, sleep deprived and the energy of a geriatric tortoise. ‘Oh it’ll get better, ‘ they said as if I was making a fuss about nothing. Presumably they meant at the end of the ten years they’d prescribed.

I was furious that I hadn’t done my homework and discovered it gave a maximum of 2% extra protection. Frankly, unless I was a young mother I wouldn’t reconsider if it gave 20%. Twenty percent longevity of a life that was existing, not living.

I’m going to use that tired old cliche that everyone is different - because they are. For many women longevity is all but for me it is about quality of life. I salute your decision.

Should have added that nearly two years onI am fit and well and enjoying life. I take the view that if it comes back then I’ll deal with it but I wasn’t prepared to save my life by giving up living. Reminds me of the disastrous lockdowns

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I haven’t made a decision yet Teddy, thanks for your response, its very interesting. After everything i’ve been through now over the last 7 years, I think my problem is now a deep depression, I will continue to consult with my Oncologist potentially on a med’ change, but as we know they’e usually much of a muchness. I find it is interesting that no one tells you of all these ‘potential’ effects knowing that they’re likely to be likely effects.

So sorry that you’re dealing with this . I stopped Anastrozole due mainly to joint pains and stiffness after about 5 months. I was an early Grade 1 of a type that rarely spreads and although the Oncologist wanted me to continue she has now discharged me and the Breast Care team have supported my decision. I’m was also 56 and post - menopausal at the time.

I was also worried about my eyesight as the sight in my left eye was quite badly damaged following a central retinal vein occlusion and if something happened to my right eye it would be fairly disastrous for me . I would suggest getting your eye doctor to write to your Oncologist if he feels that your medication is affecting your vision. At the end of the day there has to be some compromise somewhere and unfortunately you will probably be the one who has to make that decision. Have you asked your Ophthalmologist if you might benefit from supplements such as Lutein and Zeaxanthin which might help to support your vision.

I wasn’t prepared to try a different AI but my friend switched from Letrozole to Exemestane due mainly to joint pains stiffness and brain fog which was affecting her ability to work and though it’s not perfect she is doing much better . She is 60 and only needs to be on it for 5 years in total - you have already managed 7 so well done for that. As for the SSRIs - there are people on this forum who have been helped by them - not just for mood but I’ve heard they can help with hot flushes and joint pains . I had a long talk with a BCN about options apparently trying different brands really can work for some people as different firms use different additives and preservatives and the tablets are put together in a different way . If you find a brand that suits you better get your GP to put that on your prescription renewal .

Finally I have to say that although I’ve been off Anastrozole for nearly 18 months and a lot of symptoms improved my knees haven’t ever been quite the same so if you do stop you need to bear in mind that while some things may improve ( and relatively quickly ) other things may not or at least not as much as you would hope.
It sounds as though you don’t have access to a BCN anymore but I don’t know if there’s a local BC support group you could go to at all ? Sometimes BCN s and other specialists come to those and it you might be able ask for help there . I’ve also heard that Maggie’s centres are good though I don’t live near one. Finally maybe you could try talking it through with the BCNs on the helpline line here - sometimes that can clarify things .

Sending love
Joanne. X

Thanks Joanne. I am 43, the first time it happened I was 36, I was on tamoxifen for 4.5 years, but had no chemo, then it was in my arm (as no one saw a cell in my lymph) if I’d have had chemo it would have been a different story, so obviously I’ve had chemo now, which hopefully is a big factor. I don’t have a Maggies near me, the nearest is Leeds and thats 100 miles away. My cells were most likely (although the eye doctor didn’t agree 0- I find even ‘professionals’ have very limited knowledge of cancer meds’) to do with a combination of stress (we had a gang attempt break ins one night in the village) and the 2nd Zolendronic acid infusion I had had 2 -3 weeks prior to that. I am now taking Ibandronic acid a day instead. I did loads of research around eyes and it seems as we age the vitreous fluid breaks down anyway normally and comes away as gel, but eventually settles down to the bottom of the eye as liquid, but in normal women this happens slower, I hope after a year since it started that this is happening now, though I do still have some floaters and dark cells which I am hoping might get better. I did take Lutein and Zeaxanthin for a time and have started again, so that might help too. If and when i do speak to BC Nurses, they tell me to speak to my Oncologist, so I go around in circles really.

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Oh bless you - what an awful experience to have with the gangs etc. it’s also difficult I’m sure living so far away from services especially as some cancer centres offer things line massage and acupuncture which some people have been helped by. I’m also sorry that the BC Nurses won’t advocate on your behalf .
I have one large and several small floaters following injections for the central retinal vein inclusion. I was taking an AREDS 2 for my eyes but found out that vitamin E is linked with a slightly increased risk of recurrence so went onto just Lutein and Zeaxanthin which I don’t think are as effective on their own . It may be that Tamoxifen may have contributed to your eye problems as it does carry that risk and i refused it for that reason.

In 2006 I had labyrinthitis and had problems with dizziness for years which I read you have too. In the end I wrote to the vertigo society who sent some advice and exercises which helped. I also had Osteopathy and later Physio exercises - it seemed that some of the dizziness was being caused by a neck problem that I didn’t even realise was a problem as I had learned to live with it and didn’t worry about it. It might be worth getting someone to check your neck in case there’s an issue ( which might have been caused by your meds ). I did find that ginger and Gingko biloba seemed to help with my dizziness as well .
Have you tried taking you medication in the evening so that the peak effects will have passed by the time you get up in the morning ? A few years ago I started on blood pressure medication in the morning and felt like I was walking through soup with a head full of cotton wool til about 4pm but once I followed my GPs suggestion to take it at night I was ok in the day .

Sorry that you are going round in circles here - I don’t know what else to suggest except to repeat my advice to ring the helpline as the Nurses can often give you much more support and information over the phone than in a written reply. Despite the fact that you don’t like the advice that your Oncologist has given you still seem to have a good relationship with her - has she sat you down and gone through exactly what the chances / percentages are and what difference they think the various medications will make . Yours does sound like a complicated case though.

Joanne x

Hi Joanne, I think the cancer was a bread and butter case they said, the most common infact and has had the best treatment. The eye problems was always what I was worried about with tamoxifen but my wonderful ophthalmologist reassured me, he moved to an optician with great new technology which zooms into the macular part of the eye and examines for any tiny deposits which form in older people. He always assured me that it was beautifully clear, and completely unaffected, I’ve seen him a lot. From the start he said in his experience he’d never seen anyone with problems caused by tamoxifen and if he’d heard of it, it was rare and in old old people and my tests showed it never affected me at all. I had a great time on tamoxifen compared to AIs really. The eye problems started after the second acid infusion and stress and all the other issues are because AIs are so Brutal.

That neck problem is interesting though, but my Oncologist said he’s seen Hundreds of women who experience the same things, definitely all to do with horrible ovarian suppression and AIs I think.

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Yes I know that it is a recognised side effect of AIs and that is probably what it is but wondered if the the AI s might be affecting your neck which might in turn be affecting your balance . My Ophthalmologist said that he has seen women with eye damage due to Tamoxifen but not with AI - . It seems like you were doing better on Tamoxifen and it’s a shame that you had to be changed off it at such a young age. I was surprised to be offered it at age 56 as I know it’s less effective after the menopause. I did meet a lady at my support group who is older than me who is on it because she flatly refused to take an AI because of her family history of joint problems and severe osteoporosis .

I’m sorry that I haven’t been able to come up with anything helpful .

Wishing you all the best
Joanne x

Hi Joanne. No worries. There’s not a lot anyone can suggest. Yeah I know the eye situation wasn’t tamoxifen or the anastrozole, it was likely to be zolendronic acid I think, or at a push
As the eye surgeon said - faster ageing. But either way. Some of it is easing hopefully now. The neck thing might be an option thanks.

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I’ve heard that changing AI brand can make a difference. I also use magnesium (L-theonate), originally for migraines but found it also has a positive effect on my joints - no longer any pain in my hands and feet.
My desire to commit mass murder has been helped by sertraline and I’m going to investigate the new drug that has been licensed for night sweats…only available to those unable to take HRT.
Hang in there and do speak to the professionals

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Thanks Poppy that’s helpful. I am so scared of sertraline like you wouldn’t believe, please tell me it was tolerable when you started taking it, I am so affected by people’s stories of it and to be honest, I don’t even know if I’ll be able to to put it in my mouth and swallow it given all the side effects which are reported in the first 2-3 weeks. My Brother has antidepressants and tells me he felt numb and detached from himself. I am only considering them as I am so desperate, I really don’t know what else to do as I don’t move and cry everyday. I’m currently having a medication break at my Oncologists’s request and am off work for a couple of weeks. I feel as though I am shutting down, I usually go swimming on a friday morning, but haven’t been for the last two weeks. I’m having nights where I just don’t sleep a wink and then desperately try to sleep a little in the morning, so everything is out of sync.

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I haven’t had any side effects. I started with the lowest dose and upped it when I found I was no longer murderous but was still having occasional meltdowns.
My GP advised that I could increase the dose further; however, I didn’t think it necessary as I’m my usual sweet self on 100mg per day.
Everyone is different. What’s right for me might not be right for you. However, so long as it doesn’t interact with your treatment meds(ask your consultant) I would perhaps give it a trial run and see how you get on.

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