5 years in Tamoxifen - do I do another 5

I have been in Tamoxifen 5 years plus and in theory have another 4/5 to do. I admit to being at my wits end - with constant hot flushes, mood swings, anxiety, fatigue and tearfulness not to mention joint pain insomnia, an inset inability to concentrate on anything and a total loss of confidence in myself and my future! I took a year out and travelled round Argentina in the hope of trying to find a way through the mire I find myself thinking I want to come off Tamoxifen but I fear the consequences of that too . The longer I am on it the worse the side effects become - anyone else at a similar point please get in touch and share your views . .i feel pretty alone on this

28 Replies

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  • Talk to your oncologist about everything you have written here. Do you mind me asking your age and whether you have gone through the menopause! I'm 45 and have gone through the menopause partly due to treatment partly hereditary. I've had blood tests confirming I'm post menopausal and because of that my oncologist has said I am able to swop off the tamoxifen.

    I hope this helps. Xx

  • Ii have been discharged by Oncologist so am now only in hands of GP - alas not so trusting of them as I was my GP ! So guess I need to talk to him . Thanks for your reply . . I am 54 and had chemo but no idea if post menopausal

  • Talk to your GP describing everything you have written here, if needs be make a list before you go. Also ask if you could have bloods taken to see if you have gone through the menopause and take it from there. If you don't feel you are being listened to phone your oncologists secretary and get an appointment.

    I hope you manage to get it sorted. Let me know how you get on xx

  • I have appointment with GP on return to UK on 23 Feb so will do as you suggest and go from there ! Many thanks

    Elaine

  • Hi I have been on Tamoxifen since 2013 I have those symptoms it does get me down the embarrassing hot flushes especially when your out is awful the lack of sleep I could scream at times I'm now starting to feel pains in joints I can't lift anything with my right hand as the pain is awful in right arm not big able to concentrate to long at work and nobody understands they think cause your cured of cancer that's it but unless someone is in same shoes as we are on this forum they don't understand I will be getting told at my appointment next year I have to take it for another 5 years

    Best wishes

    Janet x

  • Janet - your reply - whilst. Not good - has simply made me feel - - it's ok for me to feel as low as I do because I am not going mad as I sometimes think ! - if insomnia does not keep me awake the joint pain and bone cramps do. And now hip pain from thinning bones - thank you for the reassurance

  • Do you take any alternative remedies ? - do you find you can do much exercise - if I do. anything more than an hours walk the next day I am washedd out and emotional . Good luck with everything - stay positive

  • I can't do things like kettle bells anything to do with lifting weight what I have done is joined a boogie bounce class and it's brilliant I always enjoyed exercise classes but had to stop now I've found something I can do without restrictions

    Big hugs

    Janet x

  • Hi. I can totally relate to all you say. It's 2 years since my op, I went on Tamoxifen in August 2015. I was on HRT which I stopped in August too. I had 18 months of really awful hot flushes/sweats/ sleepless nights etc. My oncologist took be off Tamoxifen in September 2016, still no difference. In January 2017 he prescribed Provera/ medroxyprogesterone 10 mg per day. They have helped a great deal, I still have some but not sweaty in my body now, just a bit damp on my forehead, still get hot in bed at times but not nearly as bad. Ask your Oncologist to give you the statistics of benefits for taking tamoxifen. I hope this helps and things improve for you. Your'e right - people don't understand unless they are going through it.

  • Thank you for that I have been completely discharged from medical care now so have no check ups or contact with oncologists so would have to through GP service and don't feel well supported there really but I will ask the questions

  • Hey. How you feeling today. I've been on tamoxifen for 2 years. The hot flushes are certainly subsided but my hair is so brittle and thin and my ankles and wrists feel ready to break. However if I do things slowly and stop trying to live my life like before cancer then I body accepts this. Not a lot but a little. Tamoxifen is a tough drug to be on but it's not for ever. Talk to a reflexologists about certain ways they may be able to help. I'm seeing one soon to help with my lymphedema that I'm left with in my right hand and arm. Worth a try. Good luck. Xxx

  • - you are wiser than me and I think Iyou just hit nail on head - I am still trying to live as I used to - I think I have slowed down slit but I still do a lot and my body reacts - but I Get scared because I can't afford to stop I still have a mortgage to pay and need to work but I get so stressed . I would like to work part time really . I get so fatigued with lack of sleep ! Thank you for telling me what I have been ignoring

  • I hear you, I am only a year in and often have thought about stopping. I live in hope that it improves, my only consolation is that my side effects from letrozole were even worse.

  • I have heard they are not much better! - I have found Tamoxifen side effects have got worse in last year - first 3-4 years were maneagble but now anxiety is ridiculous !

  • You could ring the McMillan nurses for financial advise and options. They have provided invaluable advise for my partner and I

  • I have been really trying to ease up on my body and a period of not working has done wonders for my health - alas I am not in a position to retire so am now job hunting and rushing around as before - needless to say my health is declining again - I feel it's a no win battle - my hair is thinning badly and yep the bones and joints are rubbish - - another 4 years to go !

  • I'm 51 and I took tamoxifen for 5 years, I now take letrizole as I have gone through menopause as mentioned above suggest raising with your oncologist. I wish you luck I have to say my insomnia has improved significantly since I stopped tamoxifen.

  • Hi Ella. B , I'm Kate , I have been on tomoxfin six years , feel I don't want to go another four years , have the same feelings as you , it's awful ,

    My four grandchildren keep. Me very focussed ,,,😉😊

  • Yes it's important to keep focussed . I had my boys but they are now making own lives and when I return to Uk I have to focus on finding work - a challenge when you haven't slept for weeks but it will make me focus . Stay strong and thanks

  • Hi Kate I agree with you I go back next year to see oncologist for my 5 year check I don't want to take tamoxifen for another 5 years I to am fed up with side effects of this drug the lack of sleep is the worse part for me

    I have one grandson and yes I agree he keeps me going or I think I would have gave up long ago xx

  • You are not on your own, i am going through exactly the same but i have found a manufacturer of the tamoxifen that the side effects are not as bad as some. I have also decided to do an OU course to try and get the brain working again !! x

  • Thank you for the support - yep my brain needs a project and a passion for sure I simply don't feel drawn to anything - and have focus on finding work just now - I don't really want to work full time any more but have to take whatever gets offered - not in position financially to do otherwise - just want work I enjoy ...

  • I know the feeling, i got no sick pay during my treatment, an added pressure i could have done without. That's what i did, in November i took a job in a busy hotel as a silver service waitress, something i have never done before, it was the busiest time of the year and although it was hard going because of the side effects i enjoyed it in a strange way. Maybe because i was earning again !! Good luck hun xx

  • Hi Elleeb. I'm not on tamoxifen yet but due to receive for 10 years later this year after radiotherapy. Last thu I had a conversation with my oncologist about the hormone therapy options. A blood test confirmed I am premenopausal- aged 50 - and if I do go post menopausal the hrt can be changed. Whilst appreciating people all react differently I'm very conscious of the bone pain associated with letrazole and anastrazole - (post menop hrt) so waiting to see what tamoxifen does to me first. All for a jolly good cause!

    Then today during conversation with breast care nurse she also said the manufacturer of tamoxifen can have an impact on the side effects, it depends who your local pharmacy is supplied by. Apparently the curative elements of the tamoxifen are not different between supplies but what the tamoxifen tablet is coated in. That's what can be different.

    My BCN said they will be with me for life! So hopefully you can get back in contact with a member of your previous team?

    Or maybe Macmillan can advise you on who to contact for help with this? Or they could help compare the potential side effects of tamoxifen with other hrt's? And maybe the coating on the different manufacturers pills?

    Wishing you a settled future 🌹😘

  • Thanks for the reply .interesting you have BCN for life - I was completely discharged a year ago - and don't feel GP is really the most knowledgeable on the subject ! Maybe though I will go back and try and be more forceful or rather assertive about what I feel - but I don't want their answer to be anti depressants - as it often is ! Because I know that is not my issue - thanks again

  • I was on tamoxifen for five years which is what the docs said....then because I post menopausal I have now been prescribed letrozole for a further 3 years. I luckily have not had many symptoms and what I do I can never decide if it is just the menopause ! Or another condition I been diagnosed with ! If you are feeling that unwell I would nag and nag your doc till they have to change ! We are all different and require different treatment ! Good luck

  • I was on letrozole for about 3 months during which time I moved from Ireland to New Zealand. I wasn't happy with it in Ireland but when I got to the heat of the Southern Hemisphere I developed an intolerable rash all over my back at first then my body. I cd only sleep with ice packs next to my skin. So I saw an oncologist who changed me to tamoxifen. Apparently Letrozole is 'front loaded" so you get the worst side effects during the first two years then it dies down. Tamoxifen is the opposite - it starts off gently then gets worse and worse over time. So I was getting hot flushes and some swelling with the tamoxifen but it was tolerable. Then I gotsecondaries in my brain and that totally changed my attitude. I didn't see the point in taking tamoxifen - I already have secondaries so I stopped. I am being treated with surgery and targettedr radiotherapy for the brain tumours (4of them). I am being offeredchemo that passes the blood brain barrier but will prob refuse it - I am not keen on carpet bombing my brain w chemo - it is bound to damage heal the tissue and healthy functioning. I saw a gp led holistic centre yesterday. The gp was able to give me a supplement that reduces oestrogen in cells and it does have some side effects but nothing as vicious as tamoxifen - so am taking that now. I hope this helps some people who are fed up feeling sick!!i can let you know rhe name of the supplement if you wish bxx

  • Ooh you are really going through it. That is a tough call but I get where you are coming from. I hope the targeted radiotherapy works . Your info was really interesting and I would like to know the alternative remedy or supplements you use. - good luck with everything stay strong

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