Tamoxifen

I started Tamoxifen exactly a week ago. I have a couple of questions for anyone else who is on this. Should I take it at the same time every day. I was taking it when I remembered, but speaking to someone else they said it should be taken at the same time.

How soon do symptoms start on it. So far I can still drink (thank god) I noticed a few people saying that they could not drink.

I am feeling a bit teary, but not sure why, is this the Tamoxifen. I also seem to have a kind of achy warm numb feeling in my leg, is this normal.

Thank you.

Hi SGL - I’m really worried about going on Tamoxifen after rads.
Chemo has been awful for me but it’s temporary, Tamoxifen is for 5 years so i’m really concerned about how I’ll react to it.
How have you felt in yourself so far? Do you feel different at all?
xx

Hi Ladies

I started Tam 6 weeks ago - had the usual hot flushes (which have wained now), headaches (which have cleared up now), aches and pins and needles (which I still get but liveable).

Following on from chemo, I’ve found taking the Tam a walk in the park. Hope you find the same :slight_smile:

Deb x

Well, I have to admit, and I don’t want to jinx it but I have been taking it exactly seven days so far, and apart from a weird feeling in my leg today as in achy/numb, and feeling a bit hormonal like before a period (nothing major) but enough to make me cry last night after a few glasses of wine, so far not to bad, and I really am one of those people who USUALLY gets all the side effects going!!

I am wondering if they will suddenly come once I have been on it a bit longer, but so far its certainly bearable.

Furball, I am not flushing yet lol is that a good sign, did you start flushing straight away.

xx

Hi Lily
I have now been on Tam since January. You should take it at roughly the same time every day. I take mine before I go to bed , I was afraid of feeling nauseous as medication often does that to me so my onco suggested taking it at night so I may not notice as much, I don’t think it did though!
When I say the same time… that can be anything between 10.30pm and 3.00am depending on how much fun I’ve been having!!!
I think feeling emotional is absolutely a SE, I had that one,but don’t know about the leg… ask your BC nurse. I was aware of strange premenstrual feelings in my lower abdomen. I haven’t really had any SEs but I know they start pretty soon. When I told my BC nurse that I hadn’t had any hot flushes after 5 weeks she said I probably wouldn’t…she’s right so far!!!
Hope you are as lucky as me
E x

Ha ha, QORT your so like me. I take it as night time, but that again depends on what time I go to bed and that can vary quite alot but rarely before midnight!!

I hope I dont get the flushes, but am a bit worried about the leg feeling as I know it can cause DVTs and my mum had one about eight years ago and it does say if you have a family history, you have to be more careful.

XX

Lily
I think you should see someone…GP or BC nurse, not because I think your leg is something to worry about but you have had enough worry in recent times and it would be good to put your mind at ease.
The only SEs I have had are less periods and no migraines, so can’t complain!!
X

Hi QUORT, I am going to ring my gp and see what he says, I am sure its nothing and probably just a side effect of the Tamoxifen.

xx

Hi again Lily
I’m glad you are doing that, as I say I’m sure it’s nothing but we don’t need any more worries than we have already do we?
Let me know how you get on
E x

Hi again.

I have been asked to go down at 5.20. I am sure its probably nothing, but you are right, its better to be safe than sorry.

I will let you know what he says.

xx

Hi all,
Did anyone have a bone density scan before going on Tam?

No, should we have had one then?

Not even been mentioned to me.

Thanks.

Hi
I certainly didn’t have one, does it depend on whether you are pre or post menopausal?

I’ve had a look at literature… I believe Tamoxifen can strengthen bone in post menopausal women but the reverse in pre menopausal. I also think that chemo is a factor too. I am pre menopausal but 51 so should be close to it ( but try telling my body that!) so maybe that’s why no scan. I have had all my treatment through our private med insurance and I’m sure if there was another test they could justify doing… they would!!!
x

oops

No, no bone density scan for me either and I’ve gone private through medical insurance.
I was pre-menopausal until I had my ovaries removed a week after bc dx.
K x

NICE Guidelines say no bone scan if on Tamoxifen. You have one if you’re on zoladex because that can thin the bones, whereas Tamoxifen strengthens them.
(Edited for typo)

Thanks CheshireCheese.
I could do with something to strengthen bones as have tried to cut out dairy since dx and hate leafy green veg!
K x

Hi SGL, I have been on tamoxifen for two years now and am still waiting for side effects to kick in ! When I first started taking it I was practically holding my breath in anticipation ,waiting for “something”. But nooo, am fine, however the downside is you do wonder if it’s working ! Onc and gp and anybody else I ask just says be happy you don’t have side effects ,so am going with that. Good luck, I take mine same time before bed and with 500mg evening primrose oil .

hiya sgl , i am curently entering week 5 of tamox and hope i dont speak too soon when i say my s es have settled considerably , the first week on it i was fine then for 2 weeks following that i was a dreadful emotional hot tempered dont look at me like that i need chocolate wreck ! however it did level out and im happy again - still need my chocolate tho ! hormone tests have reveales i am post menopause ( 49 soon and had period in feb ) , must have been my last egg lol so going to call nurse tomorrow and see if i still have to be in on it for the full five years xx