Tamoxifen + night sweats + hot flushes + headaches!

[MelMc68]

Hi Tracy,

I can't say that the next best thing is Teva. I said below that different brands seem to work for different people. I haven't tried Teva yet, but it is my intention to try it. Until then, I won't know whether it suits me or not. And for you, it may or may not be good. I think you'll need to find the best one for you by trying one and seeing how you go

Take care, Mel. X

[The]

Thanks Mel looks like I'll have to do with another brand as they not doing the one I wanted!! So the next best thing is Teva? X X X Tracy

[The]

Oh Lucy thanks for update that's terrible! They must be able to get it over here. ..All down to money on back to drawing board again as this was the make I wanted to go with! Drat!xxx Tracy

[lucy12]

Hi Tracy

Nolvadex is no longer available in the UK. Not sure why as you can get it in other countries, you can even buy it over the counter in Spain. I suspect this is down to cost as it was a dearer brand than most. AstraZeneca, the manufacturers, stopped selling in the UK because all GP's and consutants were prescribing the generic tamoxifen instead. There has been a long discussion about it on Breast Cancer Buddies uk (on facebook) with someone even trying to set up an e-petition to bring it back.

It's a shame as it seemed like a good one and if spending a bit more on a brand with less side effects stops women from coming off of it early, then it would be money well spent.

[MelMc68]

Hi Tracy,

To be honest, I don't know which are newer or older etc. I'm only aware that the reason Wockhardt (the ones I'm on at the mo) are more readily available is down to cost for the NHS. I believe these are the cheapest brand available at the moment.

I think your best bet might be to go with what you get to begin with and give them a couple of weeks. You never know, the first lot may suit you really well! Then, if not, you can try another etc. I think you need to try one for a couple of weeks so you can really know if there's a definite difference in effect on you between different brands. If I'm honest, I haven't been that patient, so I asked for a different brand quite quickly, but I did suspect it would take a while to get hold of them... still waiting, but the SEs have eased off after starting Venlafaxine, so I'm a happier bunny for the time being! xxx

[The]

Thanks Mel I'm having hot flushes already due to just finishing chemo so bit apprehensive about services of tamoxifen. I have a chilli but not used it much yet I'm waiting for the warmer weather when ill Def be needing it. Is the tablets your taking newer than the Nolvadex? xxx tracy

[MelMc68]

Hi Louise, thanks for your kind words, and everything else!

How are you doing? I hope things are good with you. xxx

[loulou1262]

Hi Mel

Really pleased your hot flushes are not as strong, and your chillow seems to be helping..Felt for you reading your posts and its brought a smile knowing things are improved for you xxxxx

[MelMc68]

Hi Tracy,

It seems like a bit of a minefield! I think there is no option other than 'trial and error' to find out what suits you best.

I'm still on Wockhardt, as my pharmacist is still waiting on Teva to come in. I asked my GP for Teva, because from all the posts I read (and I have read hundreds from present and past), this seemed to be the name that came up most times as a favourite for people. That said, many peolpe may not get on with that brand! I don't think there is a quick solution, though my impatience is trying to find one!

I have started taking Venlafaxine (the lowest dose of 37.5mgs) to help control the sweats and flushes. Again, this won't be for everyone, as it is an antidepressant by nature. The first day I felt really rough after it, but since then, I take it at 10 am with toast, and that has made a difference. Plus, I have already seen a difference in the night sweats and hot flushes. I'm having far fewer hot flushes during the day, and they are much milder. At night, although I am still getting hot and sweaty, it has decreased in intensity. I have managed to get a good 4-5 hours of continuous sleep as opposed to the 2-3 hours I was getting before. I also find it easier to get back to sleep (though the Chillow helps with that!)

Good luck on your hunt to find the brand of choice for you. Best wishes, Mel. xxx

[The]

I've read Nalvadex is supposed to be the best for minimal se for tamoxifen. I am due to start 1st March and trying to do as much research beforehand to minimise any negative symptoms. Any good tips welcome xxx tracy

[MelMc68]

Hi jenben,

Wow! You are a mine of information!! Thank you so much for taking the trouble to pass this on to me.

The pharmacist said 29th, but I'll give them a shout. Thank you for being so helpful and considerate. xxx

[jenben]

Hi

I had a real problem getting hold of teva.  I have attached a helpline number and email.  I rang them when the pharmacist said it was out of stock, and they were more accurate in when it would be available - which turned out to be 6 months!

tevauk.com 

For all products marketed by Teva UK Limited, please call 0207 540 7117, we are available from 8.30am to 5.00pm.

Alternatively, you can emailmedinfo@tevauk.com, or use the 'Information Request' form.

Teva used to be known as APS also so if that is available you could go for that.  I have teva or relonchem now and try to stick to those 2 if possible.

I had the same reaction with venlafaxine and good on you for sticking it out, I couldnt do it - lets hope they work for you.

good luck x

[MelMc68]

Hi all, just thought I'd check in...

Well, the pharmacist has not been able to get hold of the Teva brand yet. Therefore, I caved in and took Venlafaxine. I took the first one on Saturday. God, I felt rough afterwards! Terrible headache, wooziness, nausea etc! But I know these things take time and you need to adjust... Since then, I have taken them mid morning with a bit of toast. That has seemed to make a difference. No mor headache or nausea.

The pharmacy is hoping to receive stock of Teva on 29th, but he has said there's too much demand and not enough supply, so it could be a continuous struggle to get hold of.

Anyway, onwards and upwards. Take care all, love Mel. x

[jenben]

I totally understand and it's not one bit selfish. Do what is best for you - I for one am always under pressure if advice is given to follow it but then sometimes regret it. Have a think and do what you can to reduce the sweats! The different brand and venlafaxine may do the trick- fingers crossed xx

[MelMc68]

Sorry jenben.... Predictive text changed your name!

[MelMc68]

Hi Jensen,

Yes, I've been looking into Venlafaxine. It does seem to be used mostly for depression, but in higher doses... I've seen mention of 300mgs by some people! There does seem to be concern about coming off this drug... I assume that if you're on a higher dose it will take mor weaning...

I think I will give them a whirl though, as the night sweats are awful. The Chillow brought some comfort, but not enough. I hope that doesn't sound selfish... I know we all have to go through the pain of finding what works best for us as individuals. I just want a shortcut! Far too impatient for my own good me thinks!

Hmmmm I need to think about this one; whether to try the new tamoxifen first, or go for broke... I suspect pharmacy will need to order in the new tamoxifen brand, so that would be another few days... I just have zero patience!

Thanks for the advice jenben, I need to think about it... Fanning myself as I type with these damned flushes!!! X

[jenben]

Hi that's good that your consultant is emailabe😊 venlafaxine is an anti-depressant but normally 75mg is starting dose for depression. Just to warn you it can make you feel a bit sick/dizzy for a couple weeks whilst it settles in your system, - it maybe that the Teva brand reduces your sweats as well so it might be worth doing that first with the other drug as back up. Only saying that because I had awful sweats with one brand but but much less with the one I am on now. I take it always in a morning - only particular thing I notice is I always whatever the weather need a thin shirt on, can't tolerate being too warm. Good luck with whatever you decide is best- I is trial and error with tamoxifen and I really wish someone would so research on branding because not many professionals believe to can be a problem x

[MelMc68]

Hi all,

I e-mailed my consultant last night (not sure why I didn't think of doing that in the first place) to ask him about meds for sweats etc. and he has suggested something called Venlofaxine; 37.5mg once daily initially. I rang my surgery back this morning, and got a call back from GP within 5 minutes! He will prescribe this today, so we'll see how that goes.

The Chillow....... well, I read an array of mixed reviews on this, but decided to get one, and I think as long as you don't have unreasonable expectations, it works quite well! At the end of the day, it's not going to prevent night sweats, which I think some people may expect, but it does help to cool you down more quickly when they occur.

I didn't use it as soon as I went to bed, as I tend to get the sweats after I've been asleep for a while, so I kept it to one side, then pulled it over when the sweats began. It felt a little strange to begin with, but it does stay remarkably cool for quite a while. You do end up (as the night goes on) moving it around to find the cold spots, as eventually, it will warm up.

I think the idea of having two so you can swap when needed is a good one! The fact I bought a 'Chillow Plus' didn't seem to make any difference; the underside seemed to warm up in line with the upperside. I will keep using it though, and when I am a bit more financially flush, I will probably invest in number two.

Take care all, Mel. xxx

[Dana1]

Look forward to hearing how you get on Mel with chillow and medication for flushes. Xx

[MelMc68]

Hi all,

Well, GP has said he will specify a brand if I so desire! I've asked for Teva, as that seems popular. Who knows! It may, or my not make any difference. Also, he was going to ring BCN about any additional drugs. I assume he hasn't been able to talk to them, as he promised me a call back, which I haven't had... Poor chap, he's do good, I think if I said I needed a holiday, he'd try to get it on prescription!!

Chillow filled with water; just waiting for the four hours to remove air bubbles!! Oyez!! The lengths we go to!

Thanks to you all for caring to respond. It really helps. xxx

[Butterfly318]

Evening Mel

Looking forward to seeing how you get on with the chillow.  I use silk pillowcase's, these were a gift for my 50 as my friend read they prevent the lines and creases on your face......I got a lot more for my 50 than lines and creases.  will pm with the name of the download 'cos i don't think we can put it on here.

t will be interesting to see how i get on when i have to stop the Tamoxifen for surgery. I might ask a few of the local chemists which brand they stock.

Hope you get a better nights sleep.    Gilly x

[Butterfly318]

Deleted due to duplication..... this keeps happening

Think i am doing something wrong.  I know the site crashed last night .....

[MelMc68]

Thanks RoadRunner,

I have just bought a Chillow Plus... this is supposed be be cool on both sides, but not sure if that means you can simply turn it over? I haven't tried it yet as it only arrived this morning, but I'm looking forward to giving it a whirl tonight.

If it adds relief, but doesn't work with rotating, I'll be happy to buy another!! A small price to pay for a decent night's sleep. Again, will update about this after tonight.

Just waiting for GP's call...................................

[RoadRunner]

With regard to the different brands, you don't need to get your GP to specify the brand if you have a local pharmacist who is helpful.  I always used my village pharmacy where they knew me and my family, and once I had sussed out which brand was best for me (just trial and error I am afraid) he always got that one in for me. 

For the night sweats you can try two chillows - with the first hot flush you use the first one, it cools you down and you fall back to sleep, then with the next one you can swap them over and have a fresh cool chillow to sleep on.  By the time of the next one, the first chillow has cooled down again..........  I know it's not cheap for two, but it really makes a difference.  I keep them in pillowcases - nicer to lie on and easier to clean.

[MelMc68]

Hi Lexy,

You sound just like me!! I take mine in the morning though, as I can cope better with hot flushes during the day... I work from home, so it doesn't matter what I wear, or if I look like a sweaty betty all day! And if I'm honest, the flushes during the day aren't too bad now. But, at night, it is awful!

I have booked a phone appointment with my GP, so waiting on a call. I'll update you all afterwards.

I should be working right now... just hope the powers that be can't track my laptop usage!!

Take care all, Mel. xxx

[LexyB]

Hi ladies,
I'm also on the wockhardt brand and last night was my absolute worst...every hour or so and because I'm pretty stressed in work then finding it difficult to get back to sleep because start thinking about everything I need to do. 😞

I take mine before bed, I do that. Because someone suggested when working you want less during the day, but last night was just awful 😞 this is me starting my 3rd pack so unsure whether I should speak to gp or oncologist on 11th February

Because soaked through so much my dressings (for the radio burns) kept falling off and moving! All in all bad night...move on LB today's another day! xx

[MelMc68]

Thanks jenben. My GP(s) are all very good and understanding. I've been at the same practice for 25 years! In fact, when I moved house, I checked I wouldn't have to change doctors before we moved!! That's how much I like them!!! Will get a phone appt.

Thanks for the advice, Mel. xx

[jenben]

I think it is worth a conversation with your
Gp- there are things you can also take to deal with hot sweats- I am like you, duvet on,
Duvet off all night. Not sure any brand is ideal and I think you eventually decide which SE's are manageable. Gp may say to see the packet out but then try another brand. Hope you have a receptive GP, not sure mine believed me and all the pharmacists tries to fob me off saying they were all the same BUT my GP knows me well enough to accept my reasoning and so what the pharmacist thinks doesn't matter! Hope it settles down- I feel your pain 😒

[MelMc68]

Hi Jenben,

Thanks for that. Do you think it's too early for me to speak to doc to look at options?? X

[jenben]

Hi all been on tamoxifen 2 years. It is tolerable but last Xmas I picked my prescription from another chemist, and it took me a few days to realise why I was so ill - abdo pain, sweats, headaches. I had been on Teva and this was Wackardt. Persuaded my gp to re- prescribe excluding Wackardt. Teva was all out of stock nationally so I hedged my bets on Relon chem. I was soon back to normal. All tamoxifen has tamoxifen in it BUT it is bulked out with different additives. I haven't got to the bottom of what brand has what in it but definitely couldn't have tolerated the Wackardt any longer. It's personal preference and tolerance tho and about finding the one to choose. My chemist only has Wackardt as it is the cheapest on the market, but they have to order mine becos of the instructions on the prescription.

[MelMc68]

Hi all,

Having a bit of a meltdown this evening. I went for an afternoon nap today, as sleep is eluding me most of the time. It was great to get a couple of hours, but inevitably, I was woken by the sweats. Since then, my headache will not shift.

When I get the headaches, they're dull, but unrelenting. I've tried paracetamol and/or ibuprofen, but I can't shift them. Any ideas to help with that?

Also this evening, I've found myself finally giving in to my mood and having a bit of a weep. I just fell like I've got so far to go, and am right at the beginning, so I'm going to feel rubbish for five years! I'm not sure if I'm beginning to feel depressed, or am just having 'a moment'.

After two weeks, I assume it's too soon to even think about trying a different brand... Also, as the prescription simply says 'Tamoxifen', how do you specify brands?? Any help would be much appreciated. Thanks. xxx

[MelMc68]

Hi Mary,

I had to do a double take on the magnet bit!!!! I can't even stand to wear knickers in bed, so can't see that working for me!

My symptoms are definitely worse when I sleep. I already take mine in the morning. It is still very early days for me, so I'm hoping things will settle in a month or two.

Thanks for all of the advice on here everyone. xxx

[MelMc68]

Hi Gilly,

I agree on not taking additional meds where possible. I do enjoy my vino of an evening, so will stop and see if it makes any difference. I don't drink every night, but so far, no difference between when I do and don't, so will leave off for a while to see if it helps.

Do you happen to know if there are any relaxation thingies available on iTunes?? Never tried that, so if I can find something, I'll give it a whirl.

Thanks all, love Mel. xx

[mary32]

Hi

I have been on 'tapoxyfen' since last June and have seen a change to the symptoms. I have mostly suffered from hot and cold flushes and tiredness.

I had to come off it for a few weeks around the time of my surgery in September and noticed a difference when I went back on. The day time flushes are less the night time stuff worse. 

Things that I have read/been told can make a difference are changing the brand, changing the time you take it, the symtoms being worse sooner after you take it, so if you prefer the worst during the day the take it in the morning. I have just started taking evening primrose oil but its too soon to say its making any difference.

There is also a magnet that you can attach to your knickers which is supposed to reduce symtoms. I think someone on the forum mentioned this. I have bought it but you are meant to wear it 24 hours and the idea of knickers and magnet in bed seemed too weird!

Mary

[Butterfly318]

Afternoon Girls.

I have been on Tamoxifen now since July 2013, always Wochardt brand.  I do experience night sweats which have got better, to be fair they are bearable (if i have even one glass of wine they are worse so knocked that on the head for now)......   Cotton bedding one tog quilt etc but i do wake every few hours, I drink small sips of water all the time due to very dry mouth on the Tamoxifen (i think) so get up to go to the toilet.

I have a downloaded 25 min Relax and Sleep and to be fair it works well, I usually wake up with earphones still in so it gets me off to sleep and quality of sleep is a bit better.

As you say Mel we have to remember why we are taking it.  I will have to come of it for a few weeks for surgery later on this year which will be interesting.  Also i am keen not to use medication to alleviate any side effects. 

Take Care Girls.  Gilly x

[MelMc68]

My brand is called Wockhardt??? Early days for me yet, so need to stick with it for a good while before I would try a different brand...

[MelMc68]

Hi Dana1,

I think that's all we can do; remind ourselves WHY we take the stuff! It's got to be better than facing another cancer diagnosis!

We must stay strong!

Take care, Mel. X

[Dana1]

I take Teva tamoxifen would be good to know if different brands have less effects, probably a personal response.

[Dana1]

Hi all, yes hot flushes are a nightmare, increased in severity since starting tamoxifen. But I have to say that the chills are just as worst. I get goose bumps and literally shiver like I'm out in the snow. I seem to spend my evenings huddled under a blanket with a hot water bottle or chucking everything off and sweating buckets. I too wake at least every 2 hrs even freezing cold under covers at night. I go back to work soon in new job meaning 5.30 getting up and I do worry about amount of sleep. However much we try not to let this disease take over it seems to bite us on the bum at every turn. Keep reminding myself its keeping cancer at bay. Xx

[MelMc68]

Oh dear! There's an awful long road ahead me thinks!!

[Mindy63]

I also find I'm waking regularly at night-prob every 1 to 2 hours. My hot flushes are not too bad any more (9 months on Tamoxifen) but I think the tablets  stop you sleeping for long periods even without the flushes.

[MelMc68]

Hi all, thanks for the responses. I do have a quiet fan, but because I keep the room very cool already, I find the fan makes the sweat icy cold, so it's a bit of a vicious circle! I think I will see how the chillow works, and maybe invest in the mattress topper. I think that's called a Climsom mattress topper??? Will see how it goes

Goodness knows how you coped going back to work so quickly Lexy!! Good on you!! X

[LexyB]

Hi Mel,

Apologies not really able to give you any remedies, really just popping on to say I'm similar in that's I am awake nearly every 2 hours during the night. Struggling with it since I only took 8 days off work with surgery and have worked right through my radio, newly received a promotion in work so trying not to take time off but super tired!

You take care and I look forward to seeing any help anyone can give xx

[kevinj]

My wife has a small fan which clips to the side of the bed,she can turn it off and on whenever she likes,it is very quiet and it doesn't disturb me.

[Lucy_BCC]

Hi Mel
Whilst you await replies you may find the following link to the BCC 'Menopausal symptoms' pages helpful, you can also download the publication if you wish:

http://www.breastcancercare.org.uk/breast-cancer-information/impact-breast-cancer/pregnancy-fertilit...

Best wishes
Lucy BCC

[MelMc68]

Hi all,

I only started Tamoxifen properly about 10 days ago. After a hysterectomy in Oct 2012, I'd been on HRT, so had to wean off that before starting Tamoxifen. Oh the joys!! Naturally, coming off HRT was traumatic, as all those lovely menopausal symptoms crashed back into my life. I think they're worse when you've had a surgical menopause as it hits very suddenly.

Anyway, so far, I'm finding the night sweats nigh on intolerable, as I am only sleeping for about two hours uninterrupted. The rest of the night is spent tossing and turning, trying to cool down, then freezing so trying to warm up etc. etc. The hot flushes during the day, I seem to be able to cope with, but as I work from home, I can wear what I like, so no pressure to dress a certain way.

I am also getting headaches. They start an hour or do after taking the tablet. Now I'm working again, I think the computer is aggravating them a bit, but, they will not shift for virtually the whole day. It's doing me in!

I can rest a bit in the afternoons for now, as I'm on reduced hours, but only for a few weeks (I'll be building up to full time over a four week period), but I still have tea to prepare, daughter's homework to help with and then any other stuff that comes up. BTW, my other half is brilliant, and does as much as he possibly can, but he works full time and needs a rest too.

I just wondered if anyone had any ideas on ways to cope with these effects, as I know I have a long road ahead on these pills... Hoping the side effects don't last five years!!

Thanks all, Mel. X

P.S. I've ordered a Chillow to see if it'll help at night... Not arrived yet, but will post something when I've tried it out. X