tomixfin to take or not

hello some of u may of seen my post on this on facebook felt slated!!
so give it a go on here :slight_smile: I have been given theese to take but am so not sure if to take or not, my thinking is the side effects seem pretty crap and as it will only offer 1% more protection than not taking this is the bit that puzzles me
so ladies has any on here NOT taken and if possible the reasons why

many Thanks

Janx

Hi,

I have been taking it since January with no side effects at all.

I would suggest you give it a go, and if you do get any side effects then consider whether to stop. You might also be lucky and not get any.

Hi Jan-Jan,
Sorry you are feeling anxious about the Tamoxifen.

All drugs have side effects - even the over the counter things we take without thinking about it. Most people will get few or no side effects from Tamoxifen, and most people who get side effects find they ease off in a few weeks to months; almost evereyone finds after a year they have settled down. Only a very small number of people get the really bad, or long term, side effects.

I would encourage you to try taking the Tamoxifen and see how you go. You may be lucky and get away with few or no side effects, or they may settle down really quickly. If you find the effects are too awful, then you can discuss with your doctors if there are thigns that would help, or switching to something else or coming off all together.

For me, it makes sense to put up with the hot flushes and joint stiffness because they are a nuisance rather than life threatening. For you the decision might be different. All I would suggest is you ask yourself the question I always use… if I make this choice and the cancer returns will I wish I had made a different choice?

I hope you find a decision that you are confident in - I’m sure you will.

Take care.

it is because of joint problems I am shall I shan’t i was due for hip replacments but this is on hold due to bc

maybe will have to as they say take the bull by the horns and yes can always go to gp if not suiting
Many Thanks
janx

Hello ladies,

I am in exactly the same position, being advised to take Tamoxifen for only a 1% potential benefit. I had a bilateral mastectomy with immediate implants just over three weeks ago (a low-grade early invasive ductal carcinoma with clear nodes and bilateral high-grade DCIS), and am pre-menopausal. I must say I am very reluctant, the benefit doesn’t seem enough to be worth the side-effects.

Lakeslover, you say that if there are side-effects we can just stop, but if it triggers the menopause, with all of the symptoms that go with that, surely that won’t reverse again … will it? I asked my consultant and got an evasive reply. I’ll ask him again when I see him again next week!

I read all the stuff on here (and elsewhere) about side-effects, but maybe it is the majority with *no* significant side-effects who are silent, who don’t come on here looking for answers or support as everything is going well for them? Or maybe not.

I am really not at all sure what to do, but will probably refuse the drug. The treatment is already far worse than the disease (I was picked up at my first mammogram and had no symptoms at all) and I am wary of letting things get any worse.

Any input gratefully received!

CFS

Hello CFS

I started on Tamoxifen at 46 for 5 years, now on year 3 of Letrozole.

I am in the group that didn’t really have any side effects other than 2 stone weight gain which could be due to chemo and I was never able to get rid of it. Now on Letrozole and the 2 stone has gone.

Letrozole does have SEs of aches and pains but not with me, I have had major problems with my mouth and under hospital for Burning Mouth Syndrome which may/may not be due to Letrozole.

If I was you I would try it, it seems that the SEs appear very quickly so you will soon know. Give it a go and then make a decision, everyone is different.

Take Care
Hazel

I take tamoxifen and have little or no SEs as do a number of others I know. We don’t come in much and say this because mainly we have moved on from bcc and are getting on living our lives happily post bc.

Tamoxifen - in addition to the gains offered in preventing recurrence is a barrier to any other hormone positive bc primaries in the other breast.

My onc said that I should not underestimate its value. My surgeon said many people don’t have SEs and you only tend to hear about those who do. He advised me to try it and see how I got on with the proviso that I could stop taking it if I found the SEs unbearable.

I also only gain 1% (but as there are about 50,000 cases of bc in the UK each year, up to 25% of which are triple negative and sadly don’t respond to hormone therapy, that means an extra 375 people a year won’t get a recurrence because of tamoxifen even if they are only gain 1% extra xx

Hi,

It is obviously a very personal decision and no-one knows how it will affect you.

I was also diagnosed on my first mammogram, I am 50 and pre-menopausal. So far Tamoxifen has not altered my periods or given any other noticable side effects (4 months on treatment now). I don’t know whether if it did trigger the menopause it would reverse if you then stopped it.

I think in my mind I felt that I was most likely to go through the memopause anyway in the next year or 2 so if it was earlier or more severe due to the Tam I would put up with it. But my stats showed approx 5% gain as well for taking it, which did tip the balance for me.

One positive we don’t hear about is that my dentist said it is very good for protecting your bones, and hence your teeth, and I have also read that it can lower cholesterol.

Another with no side effects from Tamofifen here…

It doesn’t bring on the menopause - but can just mimics menopausal symptoms due to the oestrogen suppression. My periods stopped on chemo but came back as soon as I started Tamoxifen. My hot flushes also stopped. For us young ladies chemo is the threat to our infertility by bringing on a temporary or early menopause - the only threat from Tamoxifen is the length of time you stay on it.

I hope you come to a decision with which you will be happy no matter what the consequences.

X

Strange that this is only 1%. I was given around 8.75 for femera whick is around the smae as chemo in my case.

I had a really tough time with side effects of tamoxifen and wanted to give up.
My consultant persauded me to keep going and said it could take a year for things to settle down. I was dubious but kept going and I’m glad. Apart from the odd hot flush(which I hate) or chill(which I love) I would say I’m back to normal.

It is a personal decision but I would say give it a go. I think the others are right when they say you probably read more on the forum about people who are having problems with the drug as we’re all looking for advice and tips on how to cope with it.

Good luck
Tina
x

started taking them day 2 1824 days to go :slight_smile: xxx

Good luck Jan.

Tina
x