starting TAMOXIFAN may 2011

i am almost three weeks post chemo and due to start TAMOXIFAN next week. any tips/advice appreciated

first question - what time of day is it best to take the tablet - morning, after tea or before bed? do i need to take it before, with food or after food?

claire x

Hi Claire, I’ve been taking it for five weeks now and no Ses so far. Long may it last! I’m taking it last thing at night and just with a drink. Some people reckon that different brands give them different SEs because of what it is bulked up with or coated with. I’m on Wockhardt and its fine so far…

just looked at the pills and mine is wockhardt too

Hope its as good for you x

Hi
I have taken Tam (wockhardt) since December 2010 and it’s been fine and manageable. A few minor SE, but on the whole very do-able. I already had hot flushes caused by ‘chemopause’. I take Tam first thing in the morning with water and a cracker with jam.
I have day-marked all tablets (just like the pill) with a permanent marker as I sometimes could not remember if I had taken a tablet or not!
Nikki

ive been on tamox since April 2010. I take it at 9 in the night, and go to bed about half nine.

I started taking Tamox at the end of January and apart from the hot flushes it’s certainly manageable. I take mine first thing in the morning, but at a recent follow up appointment at the Breast Clinic the Dr told me to try taking half in the morning and half at night if the SEs were troublesome. I haven’t tried, but it may be worth bearing in mind.

Wishing you luck

ive had it for 3 weeks now claire.

flushes a bit but had them after cemo. and sleepless nights. but all cope able.

i have only got enough tablets from the hospital for a week or so and then i have to go to the GP for supplies.

The hospital have given me Wochardt - do you think it would be in my iterest to ask the GP for this brand or do some of you think another brand has less side effects?

claire x

I don’t know what other people’s experiences are and I’ve only had this brand so can’t compare but I’m definitely finding it OK x

Hi girls, I’ve had all 3 brands (not sure if there’s any more!) No SE at first, but I think maybe it builds up in your system, I’ve had a few warm moments at night - nothing during the day, a raging thirst (had this SE almost from day 1), achy knees, still feel knackered (not sure if still from rads or tamoxifen - although finished rads Dec) oh and rubbish nails too, I’ve been on tamoxifen since Nov 2010, no real difference between the 3 brands, although I know some ladies have real problems with certain brands. Good luck, hope any SE are managable x

HI there, best of luck with your tamox - I’ve been on since Aug 10. I do have very big sweats, go bright red and cause everyone else on the room with me to ask if they can do anything!! Short of providing a walk in freezer there is nothing to be done and I have really learnt to go with the sweats - can feel them coming now, so I know when to take off a layer …anything not capable of layering is no longer worn.
It is tricky to remember if you’ve taken it or not, and great idea to mark them up - my pharmacy kept giving me little off cuts of sheets from a number of boxes rather than a box of full sheets so I asked them to stop cos its easier to keep track if you mark them up.
I have mine with my first cup of tea in the morning . …T and Tamox seem to go together in my head. Don’t think I’ve missed one yet!

Out of interest, do people taking this in the morning find this better and has anyone switched from taking it at night?

I’m just about to start (today) and my GP said taking it at bedtime was better than in the morning because at least if I have hot flushes it’s easier to deal with at home. I’m inclined to agree as even though I didn’t have that many, my chemo induced hot flushes were far worse to deal with when I was out - people asking if I’m okay, sweaty clothes etc.

My GP said that it didn’t matter if I took them with food or not but he did say that taking them at a similar time each day was a good idea.

Nymeria x

I’ve just got my first box from the hospital - I have to start on 25th May. They’re Wockhardt as well so hopefully I won’t have too many SE’s. I’m already having chemopause hot flushes that are worst at night so I think I’ll take the pills at night. I was taking the contraceptive pill last thing at night until diagnosis so it’s a routine I’m used to.

I’ve got 30 days’ supply then I’ll have to go to the GP so I hope I ge tthe same make if I’ve been OK on them.

Jane xxx

I’ve been on Tamoxifen since September, at first I got quite a few night sweats, but never had any day time hot flushes, despite also being on Zoladex. The night sweats have since almost disappeared, as long as the bedroom is not too warm. I take my tablet in the morning. I’ve found that I get severe cramps in my legs and feet at night when on the Wockhardt brand but I’m OK on APS brand.

Severity of SEs seems to be related to age - if you’re already heading into menopause it’s not such a shock to the system, but if you’re younger and still producing lots of oestrogen then it’s like a cliff edge effect.

Sarah x

stated tam a month ago(at night) had no se,s till my period started monday(bang on time)but soooo heavy.had 2 wear tampon and pad. not normal 4 me.nxt nite had the worse nite sweats and all nites since.my palms were crinkly like after spending too long in bath.yuk! a lot of washing of bedding and body. no flushes during day tho?? mite try taking it in morn. any suggestions? love alex xxx

ps after reading cheshires post, im 41 and pre meno xx

im on the Wockhardt brand, and have had flushes, take tablet with my eveing meal about 6pm
xx

took first one yesterday and again today - wockhardt brand - i ache all over and my one leg appears to have fluid retention - cant distinguish between what is still effects of chemo (FEC n TAX) as have been told it can take ages to work its way out of your sytem and what might be the efects of tamoxifan- either way i hope the aches n pains go away. any thoughts on chemo v tamoxifan effects?

i am 46 and was pre menopausal before dx - periods stopped part way through chemo- been having hot flushes at night since then

claire