Gransnet forums

Health

tamoxifen

(28 Posts)
Dotsmam Sun 31-May-15 00:11:21

Are any of you lovely ladies on tamoxifen after breast cancer? I find it is giving me atrocious flushing along with sore joints and I think it is causing my vision to blur. Any one else have these problems?

Tegan Sun 31-May-15 00:48:14

I thought they tended to prescribe anastrozole more than tamoxifen these days [although I don't know if the side effects are different].

downtoearth Sun 31-May-15 07:54:11

Dotsmum I believe that that is one of the side effects from this type of medication,have you got the patient information leaflet from inside the box that should show you the list of side effects that may happen,if not your pharmacist should be able to give you a copy,or at least discusss your symptons with you.Have heard of similar effects from people that are taking medication for other types of cancers.

Dotsmam Sun 31-May-15 08:10:24

Oh these are all symptoms of this drug I checked the leaflet I was really wondering how folk cope with the symptoms just rubbish wording on my part. Not sure about the drug anastrozole just that they decided tamoxifen was the one for me because of being pre menopause and the stage the cancer was at.

sherish Sun 31-May-15 08:19:59

I have previously been on Tamoxifen but had to come off it as I had a polyp on my womb. Apparently this can be a side effect along with the hot flushes etc. I was then on Capecetabine which is chemo in tablet form. That too has side effects. I have secondary breast cancer. When I had breast cancer in 2002 I was on Anastrazole with no side effects.

annsixty Sun 31-May-15 08:31:48

It may be that they decided that Tamoxifen was the one for you as it is cheap as chips. I hope that is not cynical. I had two and a half years on Tamoxifen with all the attendant side effects, including weight gain. Which was denied by the Drs but common amongst women taking it ,and then I was switched to Anastrozol which I took for about three years. I was better as far as the flushing went but did have aching joints.
Let's be frank, no long term drug use is without any side effects, but 15 years later I am here to tell my story.
Good luck with it all.

downtoearth Sun 31-May-15 08:34:19

Dotsmum sorry for getting wrong end of the stick,wish I could offer some practical advice,but just wondering if there may be a support group in your area,or even nationally that may have some useful advice how other sufferers have dealt with same problems...

Elegran Sun 31-May-15 09:29:58

Have you told your consultant about the side effects you are having? You could change to one of the other drugs at any time.

I was lucky, I had five years of Tamoxifen without these side effects, and have almost finished five years of Letozole without them.

daffydil Sun 31-May-15 14:38:03

I took Tamoxifen for 7 seven years without experiencing any real side effects. It's the luck of the draw really. I agree with Elegran that a word with the consultant would be a good idea. There might be a alternative.
I remember asking the consultant about the possible vision problem and he said it is very rare but the drug companies have to cover every slight possibility.
It is 13 years since I had the last one and like annsixty I am still around.

Elegran Sun 31-May-15 15:28:58

Mine said that they usually give Tamoxifen for five years, then change to a different drug (that was nearly ten years ago, so it may all have changed)

Elegran Sun 31-May-15 15:36:35

Before I started on the Tamoxifen, just after my lumpectomy, I joined a study on which of three similar hormone drugs were best tolerated by patients - Tamoxifen. Letrozole and Anastrozole. I found them all the same - no side effects at all.

They all the limit the effect of oestrogen on those breast cancers that thrive on oestrogen. Tamoxifen works by mimicking the shape of oestrogen molecules so that it fits the "sockets" on cells that the oestrogen locks into, filling them so that the they can't link up. Letrozole and Anastrozole work by inhibiting the production of oestrogen at the source. Maybe your body will accept one method better than the other.

Dotsmam Sun 31-May-15 19:17:20

Elegran - like you I am supposed to be on tamoxifen for 5 years and then something else after that. I told the consultant all about my side effects and he asked how i was coping with them. I told him that I never left the house without my fan and that I was us in ralgex on my joints and he said"I knew that you were someone who would just get on with your life" and I have but just sometimes it gets to me a bit. Och well better hot flushes than more cancer.

Tegan Sun 31-May-15 22:01:37

Could you, perhaps, take a lower dose?

Ana Sun 31-May-15 22:10:52

You could, but it wouldn't be as effective at preventing the reoccurrence of cancer, which is the whole point of these drugs.

Ana Sun 31-May-15 22:14:21

(I've been taking letrozole for a couple of years with no side-effects other than painful joints, so I know of what I speak btw smile)

Dotsmam Sun 31-May-15 23:41:04

Well I think that as the consultant said I am just someone who will get on with it in the long run. A few aches and pains and a flush or two is well worth a longer healthy life. I think that I was just having a wee wobble yesterday. Sometimes you feel better just knowing others have been where you are. Thanks folks. Xx

JessM Mon 01-Jun-15 17:04:32

Re the flushes - Tamoxifen works by blocking the action of oestrogen on breast cells. I took it for a while in my late 40s and it did not cause flushes. Those came later when i reached the menopause. Just wondering if you are experiencing the menopause at the moment?
Also - I believe tamoxifen works to prevent recurrence only if your tumour was oestrogen sensitive. Ask if yours was tested to find out if it was this kind (not sure if this is now routine.)

Ana Mon 01-Jun-15 17:22:17

Surely Tamoxifen would only have been prescribed if the tumour had been oestrogen positive. It's a hormonal therapy designed to block the production of oestrogen in pre-menopausal women.

whitewave Mon 01-Jun-15 17:38:18

I am sure that my consultant said that the optimum time for taking tamoxifen was 2 years? I know that most people took it for longer though.

Ana Mon 01-Jun-15 17:56:17

It's now recommended that women take it for 10 years.

whitewave Mon 01-Jun-15 17:59:46

Blimey! That is a change then! It was suggested that 5 years was right but my consultant simply made that remark at the time.

Ana Mon 01-Jun-15 18:06:13

I think a lot of research has been done since, as with many of the other treatments, of course.

I'll be on letrozole (for post-menopausal women with oestrogen positive tumours) for 5 years but my consultant has said the recommendation may well have changed to 10 years before those 5 years are up.

Elegran Mon 01-Jun-15 18:09:46

I wasn't pre-menopausal, Ana I was 65 when I started my 5 years of Tamoxifen. It is also a standard in post-menopausal breast cancer.

Ana Mon 01-Jun-15 18:14:02

Frrom the Macmillan website:

"Tamoxifen is only effective for people who have hormone-positive breast cancers. It is the main hormonal therapy drug given to women who haven’t been through menopause. It is also sometimes given to women after the menopause."

whitewave Mon 01-Jun-15 18:22:03

Yes I was post menopause, but that was 12/13 years ago