Hi
I didn't like the idea of taking Tamoxifen but knuckled under because I want to give myself the best possible chance. I started it in October, and in December I decided (entirely without medical input) to reduce slightly the dose I'm taking. I did this because of my fear of the increased danger of ovarian / uterine cancer, joint pain and osteoporosis, although at that point I had not experienced any real side effects. Being a bit of a geek, I decided to take 6 tablets a week instead of 7, with a timetabled 28 hour period between each tablet. Occasionally I miss the exact time, but I have never missed talking one completely.
I'd like to know, now, whether I'm taking any risk doing this? I have my first annual mammogram and appointment with the surgeon in April, and I will tell him, and ask his advice, but wondered what the real experts (patients) thought. And whether I could go further and just take half a tablet each day (they are 20mg tabs).
Secondly, I'm on a generic version, and have recently had frequent and quite severe hot flushes and appalling night sweats. This could be because we have had lovely hot weather here (up to 20 degrees and sunshine during the middle of the day, while I've still been dressed for early morning and winter) but is Nolvadex considered worth lobbying for? (Don't know if they'd fund it in France, but I'll ask if people have found it better). Otherwise what supplements or homeopathic remedies can I try? Should I be taking any vitamin supplements? I took Vit D, magnesium and zinc for a month, and felt good during that time but don't know whether the two things are connected. I have never previously been one for taking any medication of dietary supplements.
Thank you
Lizz x
hey Lizz
how are you ??
I have no idea
more importantly I don't think there will be trial data.
Someone may correct me but as I understand it, from the nice man and NICE, once the trial has been conducted and shows favourable results it would be unfair to then put a 2nd set of trial participants on a reduced dose.
it sounded too complex for me to argue it out in my head but seemed reasonable
Obviously, with something like sleeping tablets or pain killers I happily break them in half but this isn't like that is it.
on the sweats someone else was asking this the other day, , may have got some responses
does that help ??
Carolyn
xx
real life success stories to remind you that people do survive breast cancer
https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457
Dr Peter Harvey
https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Hi Carolyn
I'm very well, thanks. How are you?
I understand what you're saying, but no, it doesn't help! I've done a bit of reading around (but it's very detailed stuff, not easy for me to follow) and it seems that a significantly reduced dose (so 10 or even 5mg a day) has the same effect in one regard (so is a good thing) but not in another. There need to be more studies.
I'm just lowering a tiny bit, which when you consider that our weight / height are not taken into consideration when the prescription is given, seemed reasonable, but I realised I'd never heard anyone talking about this.
I'll check out Chrysalis's posts.
Thanks
Lizz x
Hi Lizz your article interested me as ive been on tamoxifen for nearly 2 years, and was ok at first apart from hot flushes, but of course I still had oestrogen in me as I had been on HRT for years, before I got BC , was told my BC was caused by HRT. But last year I started getting more side effects, bloating, some joint pain etc, I went to my doctor, after saying "well of course you do have to think about Ovarian cancer" total rubbish, cause I had hysterectomy 9 years ago, for fibroids, and complete ovary removal, she agreed to give me 10 mg dose,. I do take 2 at different times of day, but sometimes as I find if I take the two for a longish time the side effects come back, I go to the loo a lot, so sometimes if im going out or somewhere special I take one a day or sometimes miss it altogether, which does seem better. Ive always thought that with HRT which as I had an early menopause and my mum had osteoporosis very badly I took from 41 till I I got BC when 67 I as a petite slim women, im 7 stone and am 4.10, did I overdose on that, do small slightly built women need to take as much of a drug as say a 11 stone woman who is 5 8. Does 1 size fit all, after all children usually up to 12 are only told to take smaller doses, and my friends 12 year old daughter is bigger than melol.
I don't think enough research is done on different amounts of drugs for different people. like you im not at all keen on taking the drug at all but feel I have to as I don't want BC back. I cant take any other hormonal drug, as others thin bones and my osteoporosis risk is too high for that. and id have to take yet another drug if I took one of them, this has even worse side effects than tamoxifen.
June
June M
Just wanted to say don't cut the tablets in half. They have a coating so that they can be absorbed without irritating the stomach. Ask for a lower dose tablet or take alternate days, if advised to reduce, but I think that cutting tablets is a bad idea in this case.
Not a medically trained professional, yada yada
Thanks for the replies. I'll try to talk it over with the surgeon on 3rd April, but I always feel at a disadvantage because I'm speaking French, and he doesn't really listen. That's wHat I like so much about all the people on here - they really take the time me to consider and reply from the heart.
Thank you all.
Xx
Hi
I know your post on lowering your dose of Tamoxifen was in 2017 but I just wondered if you did lower your dose and how it went? I have been taking it now for 6 months and would be interested to know also what supplements you take. I also live in France like you.
Thanking you Engel
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