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Tamoxifen

Biff
Member

Re: Tamoxifen

Hi, I popped into holland and barratt yesterday and explained about night sweats whilst on tam and that someone had suggested evening primrose oil but the assistant said she hadn't heard of this and I would have to check with my doc? Those of you that take epo have you already had the ok? I really need to do something for to get a decent sleep I turned tv off at 2am slept till 2.50am awake again till 4 and then slept till 5.15. I lay wide awake then decided nothing was going to happen so just got up!! Any advice???
Lizz xx

jusmejp
Member

Re: Tamoxifen

hi, i started on tamoxifen on 19th july, was told to expect hot flushes, but have only had the occasional one, and only very mild...much more manageable than when i was on letrazole...i have had some really strange sensations in and around neck/collarbone area, which is one of the areas of recurrence. firstly, the whole area went numb afer 3 days, then pins and needles, then a sensation like elastoplast being ripped off, but on the inside, currently the whole area is very sensitve, and a little tender, have had to stop wearing a chain, and get a clip for car seat belt, as the least little thing irritates it, even dress straps...onc says all this could be signs that tamoxifen is working, even after so short a time.
as for tingling in leg, not had that, but i understand u should be careful, as there is an increase risk of thrombosis xx

dancing_girl
Member

Re: Tamoxifen

JaneEB,
I've been taking Arimidex for 2 and a half months. I too am having carpal tunnel problems. I've also been finding it hard to get to sleep and my knees ache. The carpal tunnel thing is the worst though. My surgeon (not sure why BCN referred me to her and not the onc)has said she'll change me to tamoxifen, so I'll see how I go with that. I've been having hot flushes for 7 years - still getting them. Did the carpal tunnel problems go away when you changed to tamoxifen?
Thanks for the advice about the brands, all of you.
Hope all the SEs reduce everyone.

Stella xx

queen_of_retai
Member

Re: Tamoxifen

I had a horrible allergic reaction to something which coincided with me taking my first Tamoxifen
( Wockhardt ). My consultant is not entirely sure what caused my rash, it was most likely the high dose of ferrous sulphate I was on post op but I am not taking any chances!! I take the Generics brand.... no problems
E x

JaneEB
Member

Re: Tamoxifen

I have been on Tamoxifen for a few months after changing from Arimidex because of joint and carpal tunnel pain. The joint pain is only fractionally better on Tamoxifen and I can't sleep.
Decided to try and take it in the mornings while on holiday and also had a chat with my local pharmacist and explained that quite a lot of people seem to have more problems with Wockhardt (the brand I am on) than APS. She did a bit of research and rang me back to say that she could get APS, had ordered it and that it would be there for 4.30 for me to pick up before we went on holiday. What service! I'll see whether it makes any difference and let you all know.

You just have to keep trying don't you!

jane

crazy_cat_lady
Member

Re: Tamoxifen

I think there are 3 brands - generics, wockhardt, and APS, also someone a while back stated you can request it in liquid form, I have sampled all 3 brands since starting tamoxifen way back in Nov, same side effects with them all .... nothing, but an extreme thirst! - very strange, but there a few ladies that have this SE.

Good luck to all starting tamoxifen, its a scary prospect but some of us seem to have minimal SE.
X

Wandy
Member

Re: Tamoxifen

Thanx for your response O&L. Will be meeting my onc before FEC4 on tuesday, will ask him about it as well.

Wandyx

oldandlumpy
Member

Re: Tamoxifen

I think the onc just prescribes Tomaxifen and then its up to the chemist what sort they stock. I thought there were two main branded ones, different people seem to suit different brands, its just that on these threads people seem to have more problems with the unbranded ones (which are probably cheaper for the chemist to get).

if your doctor specifies a brand they have to get it for you , if he doesnt than its up to the chemist I think. I have a fantastic local chemist that picks up my prescription from the docs everymonth and delivers it to me, so I will discuss with him what sort he has in.

i did wonder though wether people get side effects at the start of treatment that settle down anyway, but if htey switch brands when they start they might put the improvement down to the brand rather than just the passage of time.

Wandy
Member

Re: Tamoxifen

'Avoid generic tablets, get brand name'....

Haven't started on Tamox yet,still in the middle of chemo,but am interested in whats coming my way! Does anyone know how many types/brands of tamox there are?and how do you know which one to have or which ones particular oncs prescribe and why.. and why they have diff side effects?

Wandyx

oldandlumpy
Member

Re: Tamoxifen

my friend has recommended getting a silk filled duvet. She says it changes temperature realy quickly and she found it a godsend when going through menopause. Troulbe is they seem realy expensive and so i am not sure about getting one till I see if i get hot at night or not.

as to leg cramps, Waitrose sell Fever Tree tonic. Its the only one with natural quinine bark in it rather than a chemical. It also just has a bit of fructose in rather than sugar or artificial sweetner. I get bad cramp anyway and this stops it.

I am sure i read on one post to split your tomoxifen into two and take it twice a day to help prevent side effects.

and of course avoid the generic tablets--insist on a brand name.

queen_of_retai
Member

Re: Tamoxifen

Hi SGL
I'm glad you went and hope thats something you can score out on the "things to worry about" list!!
I don't sleep well now either but don't know if I can put it down to Tamoxifen or not....haven't really slept very well since cancer reared it's ugly head.
It's hard to know what's keeping me awake most .... Tamoxifen, post op pains and niggles, anxiety, husband snoring and last but by no means least... the bl**dy port under my skin from my implant....can't wait to get rid of that little sod!!
E x

Biff
Member

Re: Tamoxifen

That's gd you got an answer sgl as it will put your mind at rest- I have same symptoms have started third box of tam and I take it at 10pm .Regarding sleep I'm lucky if I have 4 hours a night without tossing and turning and having a fight with the duvet - it's too hot then too cold!! Then when it comes to Thursday I'm knackered but if I fall asleep for 5 minutes during the day that's me up to early hours- can't win !! But I think I may look into evening primrose oil for night flushes.
Take care
Lizz x

stargazerlily
Member

Re: Tamoxifen

Well I went to the GP and he said it was just a side effect but mention it to the hospital.

Another side effect I have noticed, but didnt put two and two together until last night, is insomnia, I am having big trouble falling asleep. Anyone else found there sleep disturbed?

xx

sendellm
Member

Re: Tamoxifen

Hi all,

Been on tam for 2 months, take mine in the morning as soon as i get up. Only se is my legs are heavy and achy like ive been running and i get flushes which are easing off through the night but i do have a few threw the day.
Had a few weepy moments but dont know if they were down to the tam or just being normal after what we've been through!
I will try the ep, i was told by my pharmasist not to take anything herbal with tam, ive told my bcn about the se and she said that they will settle.

Hope everyones doing good

Michelle x

MairiMac
Member

Re: Tamoxifen

Morning sgl.
Started my 3rd packet of Tamos last night and like you I also have the leg thing going on! Sometimes my legs feel really heavy but when I go to bed both legs get the hot achey feeling from just above my ankles to just below the knees. I used to get leg cramps but that stopped when I started drinking a couple of tins tonic water every day. Other than that I have no SE's. I take the tablets at bedtime washed down by lots of water - especially if I've been on the vino. I also take a large dose of Evening Primrose everyday to keep the flushes at bay and so far so good. I read that you can take 3 x 1000 of EP for 12 weeks then cut down until you find a dose that keeps the flushes under control - it worked for me!

oldandlumpy
Member

Re: Tamoxifen

i am post menopausal but am still going to be given tamoxifen, I think the effect it has on your reproductive system is a side effect rather than the aim. The drug is to clog up the receptors on the cells so they cannot feed on oestrogen and die.

even after meopause your overies produce some oestrogen and your fat cells kick in to take up the slack and pump the stuff out, so you still need protection

trish1968
Member

Re: Tamoxifen

hiya sgl , i am curently entering week 5 of tamox and hope i dont speak too soon when i say my s e`s 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 i`m 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

sandra44
Member

Re: Tamoxifen

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 .

hope4444
Member

Re: Tamoxifen

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

CheshireCheese
Member

Re: Tamoxifen

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)

hope4444
Member

Re: Tamoxifen

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

hope4444
Member

Re: Tamoxifen

oops

queen_of_retai
Member

Re: Tamoxifen

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

queen_of_retai
Member

Re: Tamoxifen

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

stargazerlily
Member

Re: Tamoxifen

No, should we have had one then?

Not even been mentioned to me.

Thanks.

captaininvinci
Member

Re: Tamoxifen

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

stargazerlily
Member

Re: Tamoxifen

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

queen_of_retai
Member

Re: Tamoxifen

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

stargazerlily
Member

Re: Tamoxifen

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

queen_of_retai
Member

Re: Tamoxifen

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

stargazerlily
Member

Re: Tamoxifen

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

queen_of_retai
Member

Re: Tamoxifen

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

stargazerlily
Member

Re: Tamoxifen

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

Furball
Member

Re: Tamoxifen

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 🙂

Deb x

El_Katrano
Member

Re: Tamoxifen

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

stargazerlily
Member

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.