Tamoxifen + night sweats + hot flushes + headaches!

Public Archive
1

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

2

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:

breastcancercare.org.uk/breast-cancer-information/impact-breast-cancer/pregnancy-fertility-menopause/menopausal-symptoms-after-treatment

Best wishes
Lucy BCC

3

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.

4

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

5

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

6

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.

7

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

8

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…

9

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

10

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

11

Hi Jenben,

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

12

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 ?

13

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

14

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. :frowning:

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 :frowning: 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

15

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

16

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

17

Sorry jenben… Predictive text changed your name!

18

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

19

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

20

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