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Starting Tamoxifen today, any advice?

30 REPLIES 30
scobie
Member

Re: Starting Tamoxifen today, any advice?

Hi Joe pity changing time did not help you either but was worth a try.At hospital last Thursday I spoke to Breast Care Sister who attended to me about this and she advised me to go onto Nolvadex said it was best make to use.I have only been on them since last Monday but as yet have not felt a difference.I had quite a bother getting it from GP and have since found out that it is one of the more expensive make so he was loathe to give me it.I have only got it for one month to try it to see if it work and if it does'nt he will put me back on original one.Just shows costs come first before patient needs!Hope you get on okay changing back to mornings if not maybe try changing the make and see if it helps you.Take care Joycexx

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Re: Starting Tamoxifen today, any advice?

Joyce,

Been taking it at night for a month now. Hardly sleep at all apart from during the day, hot flushes at all times, no appetite and ocassional waves of nausea! That didn't work then!
I have just yesterday switched back to taking it in the morning. I'm hoping to swap to aromasin after my next check up at beginning of August.

Good luck to everyone else though - it may work for you.

Jo

scobie
Member

Re: Starting Tamoxifen today, any advice?

Hi Jo I changed my tamox to night time two weeks ago and am still having the terrible flushes all day and night as well.Its maybe because the weather is soooooo hot just now even at night time but it does'nt seem to have helped me but it has a few people so worth a try!I have an appointment at the hospital tomorrow(6months since op)so will ask them about it then.Someone even suggested changing the make of tablet so maybe try that.Will let you know if I get any help from them.Hope if you have changed to night time you are getting some relief.Its such a draining thing,Take care Joyce.xx

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Re: Starting Tamoxifen today, any advice?

I been on tamoxifen for a week now. Legs bothering me at night but now I got what feels like a knot in the calf area. Wakes me up in night with pain. Called Onc they said quit for a week and go back on to see if it is tamoxifen side effect. They watch for blood clots. I will keep ya posted gals.

Lulu34
Member

Re: Starting Tamoxifen today, any advice?

i found it worse for the first 6 months but now its only minor problems which iv kinda gotten used to.... i have to stop it for 6 months while im having chemo.... so i think that will take some getting used to as well as i kinda rely on it... if that makes sense.

hope your symptoms improve.... but if you do get SEs go back and see your doc and ask you pharmacist to try different brands and try taking them at different times of the day till you find something your happier with.

Lxx

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Re: Starting Tamoxifen today, any advice?

I'm 28 and i started on Tamoxifen a few weeks ago. Its really getting me down. I have lost count of the daily hot flushes and I'm constantly waking up with a soaking wet pillow and scalp. Also my libido has dropped from hardly anything to nothing. Also put about 9lb on in 3 weeks.. Cant continue like this for 5 years!!! I know i should be grateful for my health prospects but i wasnt prepared for the menapause! Really need cheering up :0( Are there any 'GOOD' side effects to this hellish treatment???

Much love Julia x

Lulu34
Member

Re: Starting Tamoxifen today, any advice?

i take mine before bedtime... iv been on it for 3 years and found flushes were better as usually im asleep when i get them... and also used to get very tired during the day if i took it in the morning.

dont really find it too much of a problem but did have horrendous bleeding problems for the first 6 months which was resolved courtesy of a mirena coil.

most annoying i find is dryness of everything.... dry mouth, dry itchy skin, dry scalp, dry poo... so have oral balance gel, aqueous cream, coal tar shampoo and lactulose to help with the SEs

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Re: Starting Tamoxifen today, any advice?

Joyce/Pammi,

I've been following your thread re changing the time of taking Tamoxifen. I suffer with night sweats and take my Tam. in the morning. I'll try changing mine to night-time and keep you updated on how it goes.

Jo

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Re: Starting Tamoxifen today, any advice?

Hi Ladies,

Joyce hope you have a lovely time just keep topped up on the sun cream you'll be fine. Also why did you onc say he wouldnt give you anything if its cos of hormones these tablets havent got any in thats why i can have them. Keep us updated.

Pammi its worth trying if you have the flushes more at night, thats when i tendered to have mine but since changing the time ive been brilliant. Let us know how you get on.

Take Care

Leslee x

scobie
Member

Re: Starting Tamoxifen today, any advice?

Thanks Leslee think I will do that but my onc would not give me anything for the flushes I have to just suffer them.Going on hols tomorrow so will start taking mine later and hope I can get a better sleep.Bit wary about going abroad this year just have to be
overcareful when i'm in the sun.
Pammi why dont you try changing as well and we can compare notes next week when i'm back to see if its helped either of us.
Take care all Joyce xx

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Re: Starting Tamoxifen today, any advice?

hi doodle i am on tamoxifen and ok just the flushes that i have clonadine for and they help i think i might change the time i take it to night time as i have most hot flushes at night
good luck pammi

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Re: Starting Tamoxifen today, any advice?

Hi Joyce,

I changed my times of my own back. Its amazing how much of a difference it has made. Fingers crossed it stays that way. You said that you suffer with headaches that must be horrible for you, i must be one of the "lucky" ones i just tend to get the flushes but the tablets they gave me Clonidine, really help with the flushes through the day and since swapping my tam to night time i hardly have any through the night.

Take Care

Leslee x

scobie
Member

Re: Starting Tamoxifen today, any advice?

Hi Leslee just read your letter and thats good.Did you have to ask to change time for taking it or did you do it off your own back?Sounds good to be able to have a better sleep at night to be able to face a new day not drained out.Hope good result lasts for you.Take care.Joyce.xx

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Re: Starting Tamoxifen today, any advice?

Hi Ladies,

Since my last post, i have changed my tamoxifen from morning to nightime, i take it between 8 and 9pm and its helped even more with the flushes, so i sleep alot better.

Take Care

Leslee x

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Re: Starting Tamoxifen today, any advice?

I've been on Tamoxifen since January 08 and the only side effects I have are the flushes/night sweats. I was pre-menopausal when I started taking it, have had one blood test which showed I was on the way through menopause (chemo induced) and am due to have another test next month to see if I'm there yet! If so I believe I will be changed from Tamoxifen.
The tiredness some people suffer most probably comes from rads or chemo. I began taking Tamoxifen as my chemo finished but before rads. I found the rads really knocked me out and it took me 9 months to a year to get back to normal. I'm sure it wasn't caused by the Tamoxifen. (I take mine in the morning).
Good luck with it.

Jo

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Re: Starting Tamoxifen today, any advice?

HI Sandra,

I too am 45 and pre menapause. I am not sure if I am in menopause due to chemo. I am to go on tamoxifen after as I tested positive for estrogen and progess. I was told that evening primrose is a no no as it triggers estrogen. You take tamoxifen to block the estrogen receptors. Before taking Evening Primrose check if it is okay when your estrogen possitve.

I am still unsure if I want to take taxoxifen due to the many side effects.

scobie
Member

Re: Starting Tamoxifen today, any advice?

Hi Cass141 I am also on Tam.started it in Dec.last year but in the last 8 weeks I have been having dreadful headaches but I have also been taking e.p.o.tablets for years and it is not helping me but go for it you never know it might work for you!Good luck kid.Scobie

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Re: Starting Tamoxifen today, any advice?

I would agree that alcohol hits a bit harder. My limit is definitely lower than pre-tamoxifen 😞

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Re: Starting Tamoxifen today, any advice?

How do you manage to drink a couple of glasses of wine when you're on tamoxifen? I struggle to drink one and get a mega hot flush into the bargain. Shame, when that was my only vice. lol

Eliza
Member

Re: Starting Tamoxifen today, any advice?

oh, yes, and a couple of glasses of wine makes the night sweats worse for me too!

Eliza
Member

Re: Starting Tamoxifen today, any advice?

Hi Pat,

I've been taking tamoxifen since mid January. I take it in the mornings, with breakfast, and have had no problems with nausea, indigestion, etc. I had some joint pain but take glucosamine and that works well for me. I have some flushes and sweats, definitely worse at night. My onc said that anecdotal evidence suggested that taking it at night could cut down on the night sweats, and if it gets really bad I might do that. At the moment I find the routine of taking it with breakfast is probably better for me than taking it at night would be. Someone I met during rads said that she split the dose half morning, half night to make the SEs manageable for her.

Eliza xx

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Re: Starting Tamoxifen today, any advice?

HI Cass,

I was told to start taking my tamoxifen at the same time as my rads. I was given the APS brand by the hospital but got my doctor to give me Nolvedex D... apart from waking up very hot in the night, i've been fine. I do find though that I only get the bad sweats at night if i've had a few glasses of wine otherwise they are not too bad!

But they have made me feel quite down... well I put it down to the tamoxifen but I guess it could be the Rads, who knows!!

I'm fed up with the weight gain from the chemo because even though I go to the gym 3-4 times per week and watch my diet it's not shifting. I was thinking about getting a loan and having some lipo suction... does anyone know anything about it? Any advice would be most appreciated.

Many thanks
Foxy

cass141
Member

Re: Starting Tamoxifen today, any advice?

Thanks for all the advice ladies, will see how it goes and hope SE not too bad or numerous. x

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Re: Starting Tamoxifen today, any advice?

Pat, I started off taking it in the morning, but was told to try switching to the evening to see if it makes any difference to the fatigue. That was about 10 days ago and I don't think it does. I do get a bit queasy after meals, but only for a short time and I think that is slightly better since I've been taking it at night.

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Re: Starting Tamoxifen today, any advice?

Hi there Pat, I started taking my tamoxifen on April 1st, Im 45 and pre menopausal. Got started with the CP Pharamaceutical brand,I take it last thing at night,started off taking 1000mg EPO with it and again in the morning but as Im lucky and have had no side effects Im down to just 500mg at night. Have had friends start taking tamox and had side effects within days and others take 3 or 4 months before they kick in.I have been fine on this brand but others do better on nolvadex . Haven't put on any extra weight and no hot flushes or night sweats .......maybe it's not working ! Who knows....... seeing onc tomorrow for review ,will see what she says. Good luck !

Sandra x

cass141
Member

Re: Starting Tamoxifen today, any advice?

Salopets, thanks so much for that advice. I'm gonna take it at night to try and avoid any nausea, when do you take yours?

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Re: Starting Tamoxifen today, any advice?

I've been taking tamoxifen for 9 weeks and so far hot flushes and night sweats are no more than I've been getting for the last 7 or 8 years or so. But I was told by someone who had attended a bc conference that evening primrose oil can be effective. This advice was given by an onc.

You should give it a couple of weeks so you can ascertain what your SEs are and if you are having the flushes etc take 8,000mg of EPO per day for two weeks. That's a very high dose and if it doesn't relieve your symptoms, stop because it will never work. If it does work, reduce the dose by 2,000mg per day for 2 weeks. If you are still symptom free, reduce the dose by another 2,000mg. Continue reducing the dose in this way until the symptoms come back and then increase it again to a point where the symptoms are relieved. This way, you will find the optimum dose.

The worst SE for me is fatigue, which is really getting on my nerves as I'm a very active person, so I'm hoping it will wear off!

Good luck.

Guest user
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Re: Starting Tamoxifen today, any advice?

Hi Cass,

I started tamoxifen 20mg last July, i also havent had any problems apart from the flushes and because i cannot have anything with hormones in they gave me a tablet called DIXARIT another name is CLONIDINE fantastic hardly have any now. I m 34. I do hope you are ok on tamoxifen its a nightmare isnt it if you get loads of SE.

Take Care

Leslee x

cass141
Member

Re: Starting Tamoxifen today, any advice?

Thanks for that. I've learnt from the chemo experience that everyone is different and their experiences of SE are different. It's encouraging to know that, I too hate taking meds and it's just another in a long list over the past few months. But if it does it's job, SE are worth it. I've been googling Evening Primrose and Starflower oil and there is such conflicting advice on that, too. x

lolly73
Member

Re: Starting Tamoxifen today, any advice?

Hi Pat

I have been on APS brand of tamoxifen for 14 months (am also on zoladex) and I just get a few flushes each day. Apart from that, no problems really. Im 35.

I was really nervous about starting mine as I dont like to take tablets, even painkillers, unless I really have to, and there are so many side effects listed, but really everyone is different, and i guess Im one of the "lucky" ones.

Good luck

PS I had nothing at all for first 3 months of medication.

cass141
Member

Starting Tamoxifen today, any advice?

Hi, I've had WLE, ANC, chemo and finish 15 rads on Thursday, starting Tamoxifen today. I've read various threads about SE and would welcome any advice. My onc said I could take Evening Primrose to help with SE, I've also heard about 'Magnapulse' which can help with SE of menapause. My onc hadn't heard of it but said it'd be fine to try and she'd be interested in any results. I've heard about the nausea Tam can cause and a few people have suggested taking it at night with a glass of milk, or splitting tablet in 2 and taking night and morning. Would be interested to hear other people's experiences, hopefully there are some positive ones out there! I live in hope... love Pat x