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Starting tamoxifen for the first time - any tips?

15 replies

Ikeameatballlunch · 17/09/2023 18:24

Trying to ignore some anxiety and considering starting tomorrow as I'm exhausted today and didn't sleep well last night anyway. (Actually may only start after Gp appt on tues, thyroid test sue and might be good to test first?)

I had to come off hrt - I was fine till recently and had a few tricky weeks post operation. So I've already got most of the most common side effects 😝

Any tips? Times, with food?

Surgeon mentioned a few things like split doses and even baby tam (which I didn't think applied for me.) obviously going to just try as normal.

I've been a bit sidelined by the predict thing as for me it's making a difference of less than 2%. Though that's death. And I don't ranch reoccurrence but can't work out how common that is.

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KimWexlersPonyTail · 17/09/2023 18:32

I took it for the full five years. It coincided with my menopause and caused a lot of extreme hot flushes but unable to take any treatment for them due to the breast cancer

as soon as i stopped taking it after five years the hhot flushes disappeared within about five days. No other side effects. Good luck !

KimWexlersPonyTail · 17/09/2023 18:34

Never bothered taking with food. Took it first thing in the a.m if i remember

Ikeameatballlunch · 17/09/2023 18:35

Ok thanks, glad it worked well for you!

Already got them 😵‍💫!

Did you take at night or morning ?

Did your periods stop by any chance?

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Ikeameatballlunch · 17/09/2023 18:36

KimWexlersPonyTail · 17/09/2023 18:34

Never bothered taking with food. Took it first thing in the a.m if i remember

Ah ok thanks. Really don't know what to do as I don't know if it interferes with thyroixine

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Growlybear83 · 17/09/2023 18:41

I took tamoxifen for three years, having taken letrozole for two years. Compared with letrozole, tamoxifen was much easier to bear. I found with both drugs that the side effects were very much less when I took the original licensed drug rather than the generic versions and varied considerably between different generic brands. If that's the same with you, your GP can prescribe the original licensed drug but I believe they can't specify a particular generic brand. Most GPs are a bit reluctant to prescribe the original drug because it's much more expensive, but persevere if it suits you better. Every time I changed brands, the side effects were horrendous, so even if you do find that one of the generic brands suits you, it's really worth while finding a helpful pharmacy that will track down the brand you want.

KimWexlersPonyTail · 17/09/2023 18:43

Periods stopped dead, didn't sort of peter out just had a regular period one month then never had another one. I had just turned 50 though.

The flushes during the night were unpleasant. Keep a spare nightie or t shirt next to the bed and maybe a towel, i would go from extreme heat to a freezing cold sweat and everything was wet.

rumred · 17/09/2023 18:51

I'm 3.5 years in. I used to take it at night but it disrupted my sleep so I take it early afternoon now.

It's trial and error. I too read horror stories but it's OK. My libido is non existent and I'm knackered by 5pm. That's the extent of it I think. Well, hot flushes too but they don't have the impact of the other stuff on my mental health. I see it as a necessary evil

Growlybear83 · 17/09/2023 18:54

In terms of the time of day I took tamoxifen, I was never told that it mattered whether I took it with food or not, but that it should be at around the same time of day. I took it in the morning because I tended to get up at more or less the same time each day, whereas my bedtime has always fluctuated far more. I also found it easier to remember to take it first thing.

Ikeameatballlunch · 17/09/2023 18:55

Thanks all.

What worries me is that I'm already knackered by 4 pm 😑
I've got some weight routines to follow to try to help with that.

Sleep is extremely important to me too.

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Ikeameatballlunch · 17/09/2023 18:59

Thyroxine seems ok with it so may take in the morning

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Ikeameatballlunch · 20/09/2023 06:53

Does the nausea get better? It's a bit like morning sickness

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rumred · 20/09/2023 08:12

The nausea didn't last long for me. The tiredness however got worse. Hopefully your body /stomach will adjust soon

ranoutofquinoaandprosecco · 20/09/2023 08:27

I'm 5 years in started taking them at 42 and I'm going to take them for another 5 years. I take them on a night. The only random side effect I have is achy ankles so I sleep with them raised if I can!

Ikeameatballlunch · 20/09/2023 08:47

Ok thanks -wondered about just splitting dose as I know some do that

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Ikeameatballlunch · 20/09/2023 08:47

On the other hand if it's a bit like pregnancy (extra oestrogen which I think it does) I can adjust my diet to what worked or didn't work then

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