I really NEED a good nights sleep.......

[ncscooby]

Thanks for replies ladies! I know I'm being ridiculously ahead! Trying to be pre-armed I guess! I've got 3 months worth at the moment (only because I forgot the onc prescription could only be exchanged at hosp pharmacy) and happened to be at GP so she gave me one instead!

[janemod]

Hi N,
In answer to your question, I would take it one step at a time, we are all different, 🙂 I found taking my first tamoxifen bearable as we all know, there are side affects, but I trust the Oncologist when she subscribe that particular one for me. The reason why I had to change to a different drug, was because I had a related problem, otherwise I would still be taking the old one. I have a close friend who is much younger than me on the same tamoxifen and she is doing really well, so I think it all depends on circumstances. Going back to who changes these drugs, I always thought it is the Oncologist job, as they are the specialist in this field. Good luck with your treatment. Jane 🙂

[Nanny_Sal]

Jane I bought the menopause magnet on line, but it is available from Boots! Like you I was willing to try anything! I don't know if it really does anything. But it seems to of helped reduce the sweats! Although it could just be my body getting used to the tamoxifen! Who knows!! Good luck, hope you find something that works for you xx

N you will probably only be given a months worth of Tamoxifen to begin with, and you need to be using it a few weeks before you can see what side effects you might or might not get. So best bet is to use up the box and then when you next go for a prescription ask for a different brand, if you have had lots of side effects. But don't worry too much, LOTS of ladies have no problems at all, and most of us find a brand that although it isn't perfect, we can live with it. Hope that helps xx

[ncscooby]

Hi all,

I am getting ahead of myself as I haven't actually started taking it yet but..

There is a lot of talk about changing brand, how do you do that? DO you have to go back to GP to get a new prescription OR do you take your meds to chemist and ask to change the ones you have left?

THanks
N

[janemod]

Thank you for that Sal, 🙂 I just need to get more positive, things have been getting me down lately. This cancer will not change me, but it is very challenging. I use to take the tamoxifen Wockhardt and although I had a lot of sweats it is not like this Anastrozole, My oncologist wanted me to persevere with this saying, it gets worse before it gets better, and I do want to take the best drug for me. I rang them in the week and told them how I felt, and they have suggested a couple of things, so I will try them, but don't think I will be able to continue with this one. Tonight I went out on my 1961 Lambretta and found the gears and brake painful to use, another kick in the teeth. Where do you get the menopause magnet from, I might try it, any thing is worth a go. Well going to have a long soak in the bath, wishing you a good nights sleep, take care Jane

[Nanny_Sal]

Hi Jane,

Sorry to hear you are having such a rough time. Sleep deprivation is just the worse!

I actually slept for 7hrs last night, I couldn't believe it when I looked at the clock and it said 5.40am 😃 So today I feel human! I actually feel full of energy. Haven't felt like this for months.

I don't know much about Anastrozole but could it be like Tamoxifen in the fact different brands have different side effects? Might it be worth trying a different brand? Not sure what else to suggest. But hope that you find something that works for you.

Sending you (((((((((((Gentle Hugs))))))))))))

Sal xx

[janemod]

Hi Nany Sal,
Just read your posting on the 7-9-14. I really feel for you, I know how hard it is with this sleep deprivation, I am actually struggling at the moment, finding it hard to sleep with all these hot flushes. I was on tamoxifen which was almost bearable but recently discovered that I have sticky blood and ended up very small blood clots on my lungs, so I have been switched to Anastrozole which is awful, my joints are so painful, and I am now on warfarin to thin the blood, not thats a problem, But I actually wish I could go back on the tamoxifen I was on, it was better than this. I was diagnosed 18 months ago and every 6 months my doctor lets me have sleeping tablets for 1 month, just to help me catch up with some sleep, not saying it is brilliant, but once I got to sleep, I would probably go for 4 hours before I woke again. Just try every thing possible to help yourself get through this. I am glad I read all these treads tonight, I am going to try some of the suggestions. Take care Jane

[Mindy63]

I'm sure tamoxifen has contributed to my sleep problems BUT last night I switched off the wifi in my bedroom and slept till 6am.
This is entirely unscientific but I had noticed I felt much better away from home and worse when I returned.
I will continue with the experiment and report back!

[Suef01]

Thanks wax2014, that's interesting to know. I might see about the Clonidine as I am already on amitryptilene for what they are treating as nerve pain from the wle sp perhaps clonidine wld be better instead as it cld treat that and the hot flushes together! Thanks for the info.

[wax2014]

Hi Nanny Sal, I've just returned from my 1st radio session and have been given my tamoxifen..wockhardt brand so hope this will be ok. Glad you have your flushes more under control..enjoy your well earned rest ..Linda xx

[Nanny_Sal]

That's good to hear!

Now I am back on the Wockhardt brand I am much happier! Last two nights I have slept from 9.30 till 4.30 🙂 heaven! I'm sure it's helped that the weather in the evening has cooled down and I am using a VERY thin duvet!

During the day I still have the occasional flush, but it passes fairly quickly, and the full on sweating only happens once in and out 🙂

Wax when you do start Tamoxifen, I really would suggest that you try a few brands, IF you have bad side effects! If you're really lucky you might find your ideal brand right away 🙂 Good Luck xxx

[wax2014]

Just to let you know the clonidine has reduced the amount of flushes I have through the night, I'm down to one or two but when they do come they are 'stronger'. At least I get a little more sleep in between each one.The aches are still as bad at night thou, lower back and legs..can't seem to win ! Don't get flushes in the day now...hope it remains the same when I start tamoxifen xx Linda

[wax2014]

Just to let you know, doctor prescribed Clonidine it should help reduce the flushes, if you look further down this thread Lottie63 has explained what it does as she was prescribed it to. I started taking it this morning so I'll let you know how I get on ..

Linda xx

[Suef01]

Hi, İ think some oncs leave it until after rads. İ asked what he recommended and he said to start straight away so may def be worth asking the question though. İ had def started with the flushes and aching joints before tamoxifen though which İ think could be orstrogen depletion as a result of the chemo damaging the ovaries. İ even have one of those magnets but am worried to use it in case it starts the overies off again as like you İ am oestrogen receptive. Do people think the magnets are good? Might give it a go overnight to see if it helps sleep! X

[wax2014]

Sue, I'm glad it's not just me with the aches and pains/ flushes after FEC, hopefully it is a delayed side effect from the Chemo.  

Should I be worried that my oncologist hasn't started me on Tamoxifen yet ?? Just seems like everyone starts before their radiotherapy , my rads start on 24th but no mention of when the Tam starts.  

Nanny Sal - Once I do start I will definately try different brands if I have a problem, seems to be (from the threads on here)  the best way to tackle the dreaded side effects. I'll try a magnet too..

I've managed to get a doctors appointment so I'll let you know what is suggested re the flushes and sleep, I've also got my shopping list for Replens and E45 cream (ready for rads) , I've just been made redundant so I'm getting what I can on free prescription... 

Linda xx

[Nanny_Sal]

Have you tried a different brand of Tamoxifen? Sounds weird but it really could make a difference! I went from having hot flushes/full on sweating every 45mins! To having the occasional flush!

I also bought a menopause magnet, which seems to help me! Also someone on here suggested Sage to help with hot flushes!

Good luck, I hope you find something that works for you! Xx

[Suef01]

Hi Linda
İ am suffering exactly the same as you. İ also had fec and started with the flushes and ached n pains toward the end of fec and continued afterwards. Then i started on tamoxifen after my op (fec before op) and it has got worse if anything. İ start rads on 25 sept but have already been on tamoxifen for 4 weeks. İ havent mentioned the pains to onc but did re the hot sweats and he thinks it is because the fec put a stop to periods half way thru. İ am 48. Let me know if u have any tips! İ have a chillow but that only helps so much. X

[Nanny_Sal]

Hi Linda

Hopefully your side effects won't get any worse! Especially if you try out a few brands of Tamoxifen and find one that suits you! I spoke to my BCN the other day and she explained that the side effects I was having weren't necessarily from the Tamoxifen, but from the Chemo. I have since found that certain brands of Tamoxifen make things worse. But like I said you just have to look for the brand that suits you.

Good luck with your Radiotherapy, hope you start feeling better soon.

Sal xx

[wax2014]

Good Morning Ladies, I hope someone can advise if this is normal? I finished my Chemo at the end of July due to toxicity levels, infections and colapsed veins ; I stopped after 5 sessions of FEC. I had a period with my first FEC but then nothing since just horrendous hot flushes especially at night time along with really painful aching bones in my back and legs and I haven't even started on Tamoxifen yet. I am exhausted with lack of sleep, up and down all night, covers on then off. I use a chillow which helps to cool me once they start but after a couple of flushes it begins to warm and is then useless.

I am due to start Radio next week , any idea when I will start Tamoxifen?? I thought my oncologist would be at the planning meeting so I could ask these questions but she wasn't there. I am really worried that these side effects will worsen and I'm struggling now !

I just need sleep..........I'm 46 by the way and my lobular cancer was 8/8 ER+

Linda xxxxxxxx

[Nanny_Sal]

I'm off to see my BCN tomorrow. I think I have thousands of questions to ask! I've suddenly realised that I have been on the hospital conveyer belt for over a year, but I really don't understand how the Tamoxifen works or how it will affect me long term. I'm only 39 and so after 5 years will still in theory b young ish! So does that mean I will need to take drugs longer? Or doesn't it work like that!

I feel I need to REALLY understand what the future holds! Well in the hospitals experience!

[tracy2905]

Yep hun ime realising this.. not as clear cut as folks like to think is it. Some people think you should b done and dusted now the ops etc are done.. If only .. keep smiling hun.. its gets us through xx

[Nanny_Sal]

Waking every couple of hours seems to be the norm for quite a few of us Tracy. I'm still waking every few hours, but that's an improvement on waking every 45mins.

Definitely worth trying a different brand, if it's bothering you. But be warned another brand could give other side effects!

It's all part of this not so joyous journey that we are all on.

Sending you lots of love xxxxxx

[tracy2905]

I thonk u may of just given me some insight to why I keep waking up at silly o'clock all through the night lol
Never dawned on me it b the tamoxifen.. I only been on them a month and every night for about 2 weeks ime awake every couple of hours.. thought it was just me working my mind over time and not being able to sleep x

[Nanny_Sal]

Hi Maire

Sorry to hear that you are struggling with sleep too!

Of course I will share anything that my Oncologist suggests.

I actually had a better day today, with less hot flushes. So I am hoping that that might mean I will get a better nights sleep. I'm not asking for much, I would be happy with a nice block of 3 hours sleep!! Anything is better than 45min/1.5hrs!

I have definitely decided that the Relonchem brand of Tamoxifen doesn't agree with me. Hoping it's well and truly out of my system now.

Fingers crossed we all get a few hours sleep tonight. Xxxxxx

[Mindy63]

I really do sympathise because I have also been sleep deprived since starting Tamoxifen. I tend to get 1-2 hours of sleep then wake up. I can usually get beck to sleep but sometimes it takes a while. Some nights I fall asleep quite promptly but then wake up after 20 to 30 mins. Alcohol sometimes helps-but obviously that isn't a great solution. I am currently on a 6 weeks break- I feel less dizzy and tired and think I'm sleeping a wee bit better but last night I was awake at 3 a.m and struggled to get back to sleep. The sleep deprivation is causing all sorts of daytime problems.

My hot flushes are annoying but not as bad as some people experience. I just wear cool clothes and strip off as soon as I feel hot. Chiffon type fabrics are a nightmare.

I bought Nytol and have taken them once or twice-think they may have helped a little-maybe a placebo effect.

If you get any suggestions from onc please let us all know. Good luck.

[Nanny_Sal]

Thanks Jo, I will give them a ring later.

[Jo_BCC]

Hi NannySal

Sorry to hear you're suffering pretty badly with the hot flushes.  If you give the helpline team here a ring the staff will be only too happy to help.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

Take care,

Jo, Moderator

[Nanny_Sal]

Thanks Lottie, great to hear that things have improved for you 🙂

Think half the problem is I haven't seen the Oncologist since I was prescribed the Tamoxifen, so I haven't been able to ask any questions about how to deal with side effects. I saw my GP who gave me a print out of none medical answers to reducing hot flushes e.g evening primrose oil. But other than that I am feeling a bit deserted, which I think is why I am so fed up. Even my BCN seems over worked and very slow to answer any emails.

Was meant to be seeing Oncologist this Wednesday, but they cancelled the appt. So have another week to wait now. But I plan on going with a list of all my concerns and questions. I won't be palmed off with a quick 5min appt this time!!

Thanks for replying xxx

[lottie63]

Hi Nanny sal

                     I had terrible hot flushes esp at night and like you I barely slept feeling exhausted by morning, my Dr has prescribed Clonidine its not an anti depressant its a tablet that affects the flow of blood opening the arteries i believe helping the flushes to subside, its not perfect it dosent get rid of them all together i dont think anything would but its a good 60% better than it was and I only wake once a night now normally to go to the loo lol , I still wake early ( Never did before bc ) but its much better and The flushes have subsided a lot through out the day too  , good luck hun I no how bad it can be, oh and also I take 10mg twice daily not the 20mg tamoxifen and that has helped too, have a word with your Dr see if he can help you 

xx

[Nanny_Sal]

Thanks SB it's good to hear that things could improve. I am willing to try anything!!

Hope things continue to improve for you xxx

[SB]

Hi Sal,

I'm the someone Mary referred to in her reply 🙂 This is what I posted last week. I hope it helps.

I am 46 and I've been having hot flushes for as long as I can remember - ever since I was in my early thrities, if my memory serves me right. I would wake up in the middle of the night drenched in sweat when my husband would actually be complaining the room was too cold!

I've tried everything from putting the A/C on the lowest temprature possible to sleeping in my undies. Nothing worked. The only thing that has really worked is excercise. I discovered that if I break into a good sweat early in the day, the dreaded hot flushes do not make their midnight visit and I have a peaceful night. Also not eating anything at all at least two hours before going to bed at night keeps hot flushes at bay. Keeping a well hyderated system helps a lot too.

I don't have a clue why these tricks work and no one seems to know either. I would guess they regulate core body temprature.

When I was prescribed Tamoxifen for my BC I thought that would be the end of me! If I already have hot flushes, what would life be like with Tam! My hot flushes have not worsened since I've started taking it provided of course that I exercise in the morning, do not eat at least two hours before turning in and drink plenty of water - up to three litres a day.

I hope you find this helpful.

[mary32]

Ooh Carol, that sounds lovely, thank you!

[CAS45]

Hi Mary,

I have been on Anastrozole since January and was finding my sleep was as disturbed as yours.  I was given some Lavender Body Creme and tried this one night quite by chance and I had a better nights sleep.  I carried on using the cream for a couple of weeks.  My sleep pattern has now returned to normal for most nights.

This may just be coincidental, but Lavender does help you to relax,.

It may just be worth a try.

Carol

[mary32]

Hi Sal

Thank you.

I hope you do try out the swimming and/or gym. I really believe that the exercise has helped me in general.

Take care.

Mary

[Nanny_Sal]

Thanks Mary I needed to hear that. I know if I could just get a few decent blocks of sleep, then I could cope with the hot flushes more easily. Still frustrating and embarrassing but at least I wouldn't be so knackered!

I currently walk around 6miles+ a day doing numerous school runs. But might take up swimming and may even join a gym. At least I would fit in there, when I am dripping with sweat 😉

Thanks for sharing your experience, I hope things continue to improve for you. Xxxx

[mary32]

Yes, I think overall it is better. I get flushes at night rather than the sweats I used to get. During the day they can get as few as 6 altogether. Although I do still get tired I do not crash out mid evening as much as I used to.

I do think exercise helps and I plan to step it up a bit to see if that improves things.

Mary

[Nanny_Sal]

Hi Mary

Have you found it any better from the time you started Tamoxifen to now? (Looking for some sort of positive life line) I really do understand how important this drug is, and feel really guilty about moaning about it. But I am just fed up with feeling like this. It's just not me, and I just want the old me back. I want to feel like a 39 year old, not a 70 year old. My mum is 65 and she's got more stamina than me at the moment 😞

[mary32]

And someone else suggested exercise early in the day, enough to work up a sweat and also no eating 2 hours before bedtime. 

I have found that the flushes have not remained constant, sometimes better, sometimes worse. I have been on Tam since June last year. My oestrogen rating was 8/8 so can't really think about stopping.

Mary

[Nanny_Sal]

Thanks Mary, I have tried different brands, I have given up caffeine, I don't eat spicy food. I take high dose evening primrose oil and starflower oil. I even bought a menopause magnet, which did lesson the intensity of the flushes. I've run out of ideas now 😞

Sadly I don't work in an office. My day consists of running around taking children to school and doing stuff around the house. I work over 55hrs a week, and without proper sleep I am struggling. I'm also at a stage where I would like to change jobs and find a new family to work for. But I don't think I can do that while I am feeling so tired and grumpy!!!!!

Hopefully my oncologist will come up with something! (Hoping for a miracle cure)

Thanks for replying, nice thing about this site is that everyone understands how we all 'really' feel xxxxx

[mary32]

Hi Sal

Sorry you're having such a tough time, ironical as you got through all the tough treatment s.

Have you tried the usual things that can effect the flushes? Change brand, change the time of day you take it, avoid spicy foods, caffeine, alcohol.

For work I have a big electric fan on my desk which I switch on as soon as I feel the beginnings of a flush. The rest of the time I carry one of those old fashioned Spanish type fans.

I believe you can also be prescribe d law dose of an anti depressant which can help too.

I hope you find something that helps.

Mary 

[Nanny_Sal]

I'm just letting off a bit of steam! 6months of Tamoxifen and I am absolutely shattered! I am waking every couple of hours throughout the night, and that's a good night! On one brand of Tamoxifen I was awake every 45minutes. I'm lucky in the fact I have always been able to cope with minimal sleep. BUT this lack of decent sleep, is really taking it's toll.

I'm getting headaches, which I've never suffered with before. I get up in the morning feeling as tired as I was when I went to bed. I'm now struggling to get through my working day. Which is frustrating, as I managed to work through Chemo and Rads. Everyone around me seems to think I am through the hard bit!! But clearly I'm not. I feel worse now than I have since diagnosis.

It's weird just after I was diagnosed, there was a report on ladies giving up Tamoxifen before the 5 years, because of the side effects. I remember saying to my mum how silly that was, and why would anyone risk their cancer coming back!? BUT I can now see why some women take the risk!

I am so tired and so fed up I'm not enjoying life 😞 things that I used to love doing, I now dread. Simple things like shopping aren't fun anymore, because I know that I only have 45mins before a hot flush hits! Then I'm dripping with sweat, which is so embarrassing and uncomfortable. So after a couple of hot flushes I just give up and go home.

I feel really bad moaning about these things, I know I should be grateful that this drug is available and that it will hopefully stop the cancer coming back! But the thought of no proper sleep and constant hot flushes for the next 4.5years of worse still 9.5years is just terrifying.

I'm seeing my Oncologist in a weeks time and hoping they can suggest something to help! I'd give anything for a few good nights sleep. I think some decent sleep would help me see things more clearly. Right now I am seriously questioning how much longer I can cope with this.