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Breast Cancer Haven
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Tamoxifen.

Hi everyone.

A year ago on Thursday I had diep flap mastectomy and reconstruction followed by six months of chemo. I was lucky( if you can call it lucky) it hadn't moved to my lymph nodes and because my onco type score was low they said I didn't need radiotherapy.. here I am now after 4 months on Tamoxifen and I seem to be coping well with it. I have gone through the phase of feeling a bit out at sea because the cancer care system is so great they make you feel like you're really being looked after but then all of a sudden you're on your own. I know I'm not on my own don't get me wrong I have great Support both from family and friends and from the medical people that looked after me.. but at the end of the day it is me against cancer in this fight and I'm hoping I'm winning..

My question is for anyone else that is on Tamoxifen. Somebody told me at the beginning that it can make you feel quite tired so it's a good idea to take it at night. This suits me because I am so crap at taking any kind of tablets regularly that it's easy for me to take it if it's by my bed every night. But I'm just wondering if it's the cause of my suddenly very erratic sleep pattern. I'm on the go all day and I go to the gym and don't eat after 8 p.m. but still I'm finding it very difficult to settle at night and yes I get night sweats but they're not too bad and kicking off a blanket for a few minutes usually does the trick. But quite often I'm tossing and turning till 2 or 3a.m. and I pay for it the next day when I have to get up and go to work. Very frustrating. I'm starting to dread going up to bed.

I haven't made the decision to change taking the tablets to the mornings yet but if anybody had any experiences or suggestions they wanted to share I'd be very grateful thank you xx

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I had chemo and radiotherapy followed by Tamoxifen. I don't think I got a good nights sleep for the whole of the 5 years I was on them. I took mine on a morning. Had sweats every night and woke regularly every two and a half hours. I was one of the walking dead. I had to cut my working days back as I just couldn't cope with the tiredness. You may have to rethink how you day spans out and take it a little easier. I waited quote a while before going back to the gym and then only went on my days off work where I could also rest. You will work out what's best for you but I found I didn't really get my life back in I stopped tamoxifen. I also felt very cut off after treatment and ended up two years on having to have some counselling. I felt like they cited my body but left me mentally scarred. I wish you well and hope you get it all worked out x

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Hi there. Sorry to hear all you have been through...you seem like a very strong lady. I have been on tamoxifen for just over a year now. I take mine first thing in the morning.....I fall asleep ok in the evening but wake up a couple of times every night-finally getting up every day at 5am. Wish I could sleep all the way through like I used to😞 So for me it still affects my sleep! Xx

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Hi Gracie - well done for having come through what you have. I went through chemo, surgery, radiotherapy, Herceptin and now on Tamoxifen. I did take it at night but thought it gave me night sweats so changed to the mornings... my sleeping pattern is very erratic - I wake up at 2.30 regardless of what time if go to sleep and lack of sleep equals more hot flushes so catch 22 situation as I have to get up at 5.30 to get to work.

I also have sore feet, not sure what side effect that is from so I go to the gym as and when I can... I think the key is listening to your body and don't push too hard... you have gone through a major trauma so you and your body need time to recover.

Look after yourself..x

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Hi Gracie/ ladies

So glad (sorry!) I'm not the only one not sleeping properly. Thought maybe the night sweats were waking me up just before they hit but it isn't that. I think the tamoxifen mucks up your sleep patterns, I'm generally waking at 2ish too, I don't think it's because I'm worrying I just fall out of deep sleep, like someone's woken me up. Very irritating and debilitating as have been shattered!

I take mine just before bed and find the worst sweats are just after my morning coffee (I know caffeine is bad but need my morning fix!)

I've been taking gabapentin for the last 2 weeks. Had it prescribed initially for the nerve pain after lymph node removal but read somewhere it was fab for hot flushes and my consultant agrees ... plus it makes me sleepy too so take before bed. Have had a few nights sleep that have been mostly undisturbed which has been amazing. I still wake up but it's better not so frequent. I don't like the idea of taking them permanently but have had such awful nights sleep since Feb that I think I'd try anything!

Hope you all manage to get a few more zzzzzz's soon xx

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Hi. Good to hear a positive story. I'm on tamoxifen, since March, and I take it at night as less effects. I've also cut out caffeine and significantly reduced alcohol, which has made a big difference; alcohol is for special occasions only.

Try asking your GP for Zopiclone (sleeping tablet) if it continues; I have them 3 times a week and stay human that way!

Good luck.

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Thank you all for going to the trouble to reply it's great to hear I'm not on my own with this symptom and I definitely blame the Tamoxifen now because I've always been a great sleeper and also have always been a real grouch if I don't get my sleep. The Hot Flashes I'm not usually too bad but I have started to notice that they do have triggers like caffeine, alcohol, eating rubbish food. As I am on a diet plan at the minute it's quite funny because the minute I stray from the healthy food options I start getting more Hot Flashes it's almost like a warning system lol.

After typing this question last night I think I possibly had the worst night's sleep since I started taking Tamoxifen. I have been up about seven times and I'm already known for my freaky dreams but last night was a doozy so I'm up since 6 because the last one was a little bit too real.. I think I will ask the doctor about it and possibly maybe another brand of tamoxifen would be different? The one I am on is called NOLVADEX-D 20mg

Thanks again all. I love our little community xxxxx

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I get vivid dreams too. I researched brands of tamoxifen and they do seem to differ as to side effects. Some companies bulk the pills with different substances which can make a difference. I now only take tamoxifen by Teva as I think they are best for me.

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Interesting comments. Along with tamoxifen I have Rheumatoid arthritis and take a drug called methotrexate which has similar side effects to tamoxifen. So I have chronic fatique from those drugs plus tiredness from the arthritis. I sometimes sleep for 15 hours. I have sore feet which I assume is from arthritis but now think it could be tamoxifen! Its all so confusing! I take so many drugs (7 in all) and they all have rotten side effects. I started gabapentin recently for sweating and think its helping. But another drug in my cocktail! I don't think I am 'me' anymore or ever will be again.

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I know how you feel. I went from never really taking any medication not even headache tablets and rarely going to the doctor to having a track worn to the various clinics in the hospital, a massive operation and all sorts of drugs in a year. But the end result is very positive so I am nothing but thankful to everybody involved even though I wouldn't have chosen this path. I'm thinking now that I will ask would there be a benefit from trying a different brand even though I don't have much else to complain about side effects wise, but the sleep deprivation will start to wreck my head if it doesn't settle soon.

I did have the feeling at the beginning that my ankles are very weak when I get out of bed in the morning but it usually improved within a few minutes and that seems to have lessened quite a lot lately I don't notice it any more

Thanks all x

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Hello Cathy. I also have rheumatoid arthritis and all the pills and stuff that goes with it including biological infusions. My RA and cancer consultants are in the same hospital and they both have my details from the other - I hope they actually read it!!! Do your RA and cancer people talk to each other?

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My breast cancer clinic is virtually next door to my rheumatology department but they expect me to liaise between them. I asked my cancer doc if I could change from tamoxifen and they said I would have to get go ahead from my RA docs. It really ***** me off. Plus when i had my first rituximab infusions recently the ward made a complete hash of it. The poor nurses didnt have a clue. It could have been dangerous. I ended up with dangerously high heart rate and had to have ECG. Totally avoidable.

I am with Royal Free in London.

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I take tamoxifen in the morning and sleep ok. I do get more tired though during the day. I have to rest a while after walking the dog, and if doing housework I have to rest after about half an hour. I'm not sure whether this is because of the tamoxifen or whether it is mild fatigue from the cancer and the treatment

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Aha, someone like me! I take my tamoxifen at teatime (around 6ish) and I suffered so badly with the flushes that I also take Megace (megastrol Acetete) to combat them....and it's definately working even though I do still get the dreaded 'power surges'. It's this relentless tiredness all the time thats getting me down at the moment and I too am wondering if it's just a throwback from the radiotherapy. I have awful shooting pain in my legs which is getting worse and I am going to ask my gp about this at my next appointment.

I too walk the dog and sometimes feel like I need to go to bed after just a short walk! Not at all like me, I'm not the sitting doing nothing kind of person! But I'm here and thats the main thing....the rest, I guess we all just have to find ways to deal with, somehow.

stay well

Blue :-)

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Sorry I'm trying to find out if tamoxifen stops periods I was put on this to stop heavy periods they did for a while but now returned any input would be gratefully appreciated

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I also have difficulty falling asleep even though I am exhausted and usually am awake at 2. Often fall back to sleep about 6 so I am good and drowsy for the day ahead. I take my tamoxifen before bed and am so so hot all night ( apart from the few minutes I am cold). I would love a 10 hour unbroken sleep. I take a sleeping tablet once every few weeks just to recharge.

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I have the Wockheart brand of tamoxifen have tried one other but can't remember it's name...

I personally am dreaming much less than normal probably due to not sleeping as much... it is amazing how different foods and drinks make the hot flushes worse. Coffee/hot drinks and alcohol are the worse culprits for me!

It definitely is the gift that keeps giving, I play netball and my ankles are soooh weak now that I have to strap them up before I play. It also takes me an age to walk down the stairs in the morning! Xx

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If it makes a difference to anyone 😀, I take Anastrozole and I keep "dreaming" of a whole night sleep! Maybe the lack of oestrogen, which the medicine is stopping our body from producing, is the culprit, I don't know, but I normally get out of bed at 2 or 3 or 4, whenever my body feels like waking up, and play a game on my tablet (I know it's the last thing one should do because of the light emanating from the screen), and then go back to bed, and if I'm lucky, I sleep for another 2-3 hours more.

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Hi can I ask did your periods stop whilst taking tamoxifen mine did for three months now started again I don't no what to do

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I had a hysterectomy in 2010, so don't have periods any more. I looked at the side effects listed in the leaflet and it increases the risk of blood clots, but also says if you have unusual vaginal bleeding or discharge to consult your doctor. Hope this helps

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