Hello Lizzell, 

I am sorry to hear that coming off Tamoxifen after 10 years has left you feeling so exhausted and emotional. 10 years is a long time to be taking a drug and it may be your body's way of adjusting to the change. I would maybe give your doctor a call and describe these symptoms in detail. I am sure your GP will have some good advice for you and suggestions to help you feel better again. I do hope these symptoms will subside very soon and that the doctor can help you get back to normal again in no time!

Best wishes, 

Lucie, Cancer Chat Moderator

Hello Lizzell, 

I am sorry to hear that coming off Tamoxifen after 10 years has left you feeling so exhausted and emotional. 10 years is a long time to be taking a drug and it may be your body's way of adjusting to the change. I would maybe give your doctor a call and describe these symptoms in detail. I am sure your GP will have some good advice for you and suggestions to help you feel better again. I do hope these symptoms will subside very soon and that the doctor can help you get back to normal again in no time!

Best wishes, 

Lucie, Cancer Chat Moderator

I have found this thread an interesting read and just wanted to add in case it is useful to anyone.

I was prescribed Tamoxifen recently and lasted a week in it. After a few days I had really bad fatigue, I was falling asleep all the time during the day and just felt dreadful. It was almost like chemo symptoms. I've had an outbreak of spots all over my face neck and chest and have had terrible night sweats. I was also in a lot of pain all over.  I've been off it a week and the fatigue disappeared immediately, the pain has lifted and I feel much better. 
 

Im 37 and am on the Zoladex injection so my periods have stopped and I'd get mild menopause symptoms from that but the Tamoxifen made things much worse immediately. I spoke to a nurse about it at the hospital and she said she'd heard people say they felt like they'd aged 30 years overnight after taking it. 
 

This medication just didn't work for me but I have also spoken to people who are OK on it. Just wanted to share another experience.

Hi Lucie (and Lizzell), I stopped Tamoxifen a couple of months ago after 11 years. I have some of the symptoms described on this forum - mainly extreme fatigue and headaches. How long is it likely to be until I feel better? I was given no warning of the effects of stopping Tamoxifen by the breast cancer specialist who suggested I stop the medication. 

Hi all, I had stage 2 breast cancer, her2 positive 5/8 estrogen and progesterone positive at age 32. I had a double mastectomy,  chemo, herceptin and Tamoxifen for 10 years. Reconstruction surgery took several years.

I finished Tamoxifen June 2023. The fear of coming off it made me very anxious but counselling and a short dose of mild antidepressants helped me tremendously. 

Apart from normal life illnesses like cold and flu germs like I have today, ive noticed over the last couple of weeks I've actually felt like my old self pre-Cancer. Much more energy, less brain fog, confidence returning and mostly feeling braver to plan for the future rather than fear it.

I eat very healthily, dont drink much (2-3 units at most a week, sometimes no alcohol for a few weeks). I exercise regularly a mix of yoga, weights, cardio and swimming for a good balance. Exercise helps my mind as much as it does my body.

I do find a daily prebiotic is key for a healthy gut, Cod liver oil with vitamin d for brain and bone health, magnesium with zinc and calcium helps with sleep and bones plus a supplement called Propolis for a healthy immune system. So if I'm unlucky and Cancer returns, I know I've done everything I can to stay healthy so will be more mentally strong to deal with it. 

Wishing you all the very best ️ ️ ️

I have been on tamoxifen for 10 years thinking I should wean myself off them rather than stopping it completely.  Any thoughts? While on it I have had extreme flushes and mood swings. 

I am so happy to have found this forum. I have always felt like my experience is peculiar to me alone.

I was diagnosed in 2009 and started treatment in Jan 2010. After Chemo, radiation and chemo again, I was put on tamoxifen. I took it for five years, was still able to work twelve hour shifts. Even though I was tired, I just pushed forward because my children were still little. But in my sixth year, the tiredness became unbearable. I tried to go forward but had to give up work because I was constantly tired and had body pains and aches till date. When I stopped work, I thought I was going to be able to now stay at home, cook and clean as I did before even when I was sick.

I was always afraid of failing and disappointing myself and people around me. When I stopped work, I realised that I didn't even have the strength to clean but could manage the cooking. It hasn't been easy for me because I always show the braver side of me. Now I can hardly do anything and barely can do the cooking at home which is like a chore. My children do help but its like they are not always happy doing so. I get anxious, flustered, tired, drained, stressed all the time. I took tamoxifen for ten years and went off it in Jan 2022. Since then, life is so difficult for me. I can't work because entering a car even makes me to throw up so I have to take anti sick medication everytime I have to go out. I sleep everywhere and when I sleep, I do not feel anything until I wake up suddenly. When I sleep, anyone can come around, do anything they want and leave and I won't even notice or realise someone came in.

My husband and children don't understand and probably think I might be exaggerating because I look ok. So they just abandon everything for me at home as if to say I am always at home so all the chores should be done by me. I have tried to explain to them that I am not coping but they don't understand. I think that deep down they believe that I don't just want to work because I am being lazy.

Has anyone had to give up work because of tamoxifen? Before I gave up work, I started alerting my husband two years prior that I wasn't coping anymore. Going to work everyday seemed like a nightmare. I couldn't cope on the bus and train journeys because I used to get so stressed. I became bitter and resentful towards people who couldn't understand my predicament. I do not know what to do when I feel people expect more from me than I can deliver. I can't have financial help from government because they will say my symptoms are not physical. If I apply to the job centre, they will harrass me constantly to look for work and I can't even help myself.

I do not know what to do. I feel that I have failed everybody around me.

Hi  sorry I missed your msg until now! We all react so differently so I don't think there's a silver bullet. I personally came off it straight away as I recall a study that showed being on Tamo >10 years increased the risk of endometrial Cancer. Hope you're doing as OK as possible 

I feel your pain here... It is terrible.  I have only just came across this thread and joined.  I stopped tamoxifen last year after 10 years .. I had never felt so tired ..ever .and it's gotten worse.  Days I just can't be bothered to even get dressed.. I feel I'm so exhausted drained I get really bad aching muscles mainly in my thigh muscles and wrists it keeps me awake at night so I don't sleep properly.  I feel agitated with myself for not being able to be who I was before .always on the go  ever spent half my days laid on my bed.  It's causing depression now and I get very emotional I feel I'm losing a grip on everything and it's very difficult to cope and manage.  Thankfully my children are older and they can help me.  But doesn't make me feel any better I feel a failure. I'm letting everyone down.  I have two 12 hour shifts a week which I really struggle with now but I have to work as I'm a single mam.  Everything just seems so so hard.  I think the medical people need to re evaluate the effects when stopping tamoxifen because this is clear it is this that is causing all these issues for us people.   Doctors should be made aware of this as it is a serious serious thing to feel so withdrawn from the world and a failure to yourself and family.  Terrible.

GP appointment is what I need now and to discuss this properly. Thank you to each and everyone of you for posting in this thread its a huge eye opened to realise and now understand it is the medicine that has caused these awful things 

Love and best wishes to you all    ️

Does anyone fancy meeting up in London ( I am in west london) just to chat and support each other post stopping tamoxifen. I stopped a month ago after 10 years and I feel sad, low and a failure in every aspect of my life. Which is not the person I have always been, which then becomes a downward spiral of thoughts which isnt helping 

I also have bee long term on Tamoxifen just short of 15 years  but I’m struggling a bit in that my energy levels are pretty poor and I’ve not known anyone the same to compare notes . My skin is very dry and I’ve still got hog brain my toenails are are very crumbly which isn’t very nice