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
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.
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
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
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.
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?
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
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.
Thanks for all the advice ladies, will see how it goes and hope SE not too bad or numerous. x
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
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
oh, yes, and a couple of glasses of wine makes the night sweats worse for me too!
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
I would agree that alcohol hits a bit harder. My limit is definitely lower than pre-tamoxifen
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
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.
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
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
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
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