Hi
Just thought I’d share this with anyone on tamoxifen and having problems with hot flushes.
I had lumpectomy in September 2007, 15 sessions of radiotherapy and I’m now on tamoxifen for 5 years.
I was prescribed the generic tamoxifen as I suppose most people are. I had hot flushes which were so bad there was hardly a break between them. I couldn’t sleep for them and ended up feeling really depressed and ill.
I told my bcn about this and she told me to go to my GP and change my tablets to Nolvadex-D.
My GP was loathed to give me these probably because they are still tamoxifen but more expensive. Anyway she agreed to let me try them for 3 months.
Almost immediately the hot flushes stopped and I felt so much better. The weight I’d put on on the generic tamoxifen, and couldn’t shift in spite of dieting has gone, in fact I feel really well. I’m sleeping much better too.
My GP has agreed to continue to prescribe Nolvadex-D for me and in fact was very interested to know what a difference it had made.
I might be wrong but I think that the generic tamoxifen just dumps the whole dose into your system at once whereas the Nolvadex-D releases it gradually over time.
Anyway whatever the reason I thought I would share this info with anyone who is having a bad time on tamoxifen.
Thanks Jan… really useful info. I’ve just been prescribed generic tamoxifen, even though I did ask for the Nolvadex, and was told by the bcn 'oh the hospital prescribes nolvadex anyway…I think it must have been a fob off as it certainly didn’t arrive!! I queried it and was told just carry on with the generics for 5-6weeks as it would take time for the body to adjust!!..
Your comments about the drug being dumped in one go does fit as I get a massive hot flush about 40mins after taking it. I haven’t had the flushes as much as yours …YET…but I am getting quite a lot of headaches. Not wanted to get on the scales either as already gained 2 stone over the last 6 months on chemotherapy.
Just about to finish first batch so will have to go to GP, so not much harm in asking for the nolvadex one …
Just ask and stick to your guns. My bcn told me that if you ask for Nolvadex-D you can’t be refused. Just ask for a 3 month trial. If, at the end of 3 months, you’re feeling better the GP won’t change it back.
I had lots of headaches too but I do get really bad migraine so I couldn’t really say that the headaches were down to tamoxifen.
Very best wishes to you. I hope it works for you like it has done for me.
I just got given Nolvadex this week. I’d said I didn’t want the CP Pharmaceuticals one and the pharmacist said “I’ll give you this” and it was the Nolvadex. I start this pack at the weekend, so it will be good to see how I get on with it.
I was on tamoxifen generic for a 1 year and 4 months before i changed to NOLVADEX D and it did made a difference. I got lesser hot flushes now but i gained too much weight from generic tamoxifen and i could not shift them at all.
My GP was reluctant at first to prescribed me that drug but she did it in the end.And i was pleased with it.
I’m a new girl on here. I was 33 when I was diagnosed with Breast Cancer, and had similar treatment to sweetwenguk, I’ve been on tamoxifen for 18 months now , in which time I’ve managed to put on a pile of weight, I just cannot shift if it at all, I get really bad headaches, hot flushes, sex drive gone!, painful sex, heavy and very painful periods, went to doc for check up and was told “nothing can do as tamoxifen is only option!” had blood tests and I’m “borderline anemic and my thyroid function is borderline to be being abnormal” However until I get “worse” I just have to live with it! I’m soo very frustrated as I’ve got another 3.5 years to go like this.
Does anyone feel just tired all the time, as if I’ve got cotton wool inside my head?
I’m sorry for the rant, but I’m at the end of my tether, I just feel that now I’m being treated I’ve no right to complain!
does anyone else feel like this?
For those of you suffering night sweats/hot flushes from Tamoxifen, I have some interesting information… I was talking to someone yesterday who went to a bc conference last year. The onc suggested evening primrose to relieve the side effects. But, here’s the interesting bit, in LARGE doses. Here’s how it goes. You take 8,000mg a day (yes that is 8,000mg! 8 x 1,000mg or 16 x 500mg capsules) for two weeks. If that doesn’t relieve the symptoms, give up, as it’s never going to work (it doesn’t work for everyone). But if it does relieve them, reduce the dose by 2,000mg for two weeks. If you still don’t have symptoms, reduce the dose by another 2,000mg for two weeks. Basically, you keep reducing the dose until the symptoms come back and then you up the dosage a bit again, until you reach the level that is necessary for you. The lady I spoke to says she just takes 2,000mg a day now.
I’ve just started on Tamoxifen and haven’t had any side effect so far, but I think I’ll try this if I do. Apparently, it is also good for your skin.
Is it definitely o.k to use Evening Primrose if you’re oestrogen positive? I’m on Nolvadex and hot flushes are a pain - but I’ve been reluctant to take anything to try and alleviate them in case it affects the efficiency of Nolvadex.
Red clover blossom is good for hot flushes too, it is ok to take with tablets as I have checked with my ONC. I have been on Tamoxifen, Arimidex and am now on Aromasin. Hopefully third time lucky these will agree with me!!!
I have been on Arimadex since Jan’o8, no problems at first apart from flushes which I’d been having anyway since coming off HRT and they’ve now more or less gone. For the past few months I have had problems with my legs, started at night with the aching but now its constant and my feet are stiffening also. When I go out shopping after a couple of hours I’m shattered - its like I have lead weights attached to me. I love line dance but am finding it increasingly difficult and not able to do much.
I have a hospital checkup next week and am thinking of asking for a change of tablet which I expect will be to Tamoxifem but after reading some of the posts it looks like a frying pan to fire situation.
Has anyone out there done this switch and if so how did it go? I know I’m no spring chicken(72) but walking was never a problem before my opp so I think this is all down to the tablets and the thought of another 3.5yrs to go with it getting worse doesn’t exactly fill me with joy!!