Tamoxifen for 2 years anyone?

Tamoxifen for 2 years anyone?

Tamoxifen for 2 years anyone? When i saw my onc a couple of weeks ago we were talking about tamoxifen and my weight gain - from 63 kilos to 72 in 5 months! she said that after i have been on it another year (have been on it since last april and am 48 years old) they might think about taking me off it and putting me on something else. I live in France so cant really ask anyone else here so wondered if anyone has done this in the UK. She did say they would test my blood for hormones first before deciding anything.

Hi,
I started taking Tamoxifen 18 months ago and was told i would be on it for 2 years and then i would be changed to Arimidex. You can only have arimidex if you are post menopausal otherwise it can do more harm than good. That’s why you will need a blood test to check your status. Changing has been shown to improve the chances of not having a rehearsal.
Kelley

I started Tamoxifen 12 months ago and was also told I would be on it for 2 years and then change to Arimidex because you had to be 2 years post menopausal.

Janet

I have been on Tamoxifen for 9 months. I was 46 when I started it . I’m now 47. I have been requesting blood tests to check my oestrogen and menopausal status since I finished Chemo. I have been told that i might stay on Tamoxifen for 5 years but I’m aware of the study that showed better results for women who were put on an aromatase inhibitor following 2 years of Tamoxifen. However I quite like the idea of 5 years of Tamox and then another 5 years of an Aromatase Inhibitor as this will give me 10 years of cover. I’m not sure if it works that way but I like the idea of it. By the way even though my blood tests show I have been post menopausal since the Chemo turned off my periods they do not yet consider it safe to put me on an AI.

Frances

Arimidex I seem to be one of the few who has been put straight onto Arimidex . I was premenopausal and periods stopped after cycle 3. There didn’t seem to be a reason for the arimidex -ie haven’t got a history of thrombosis etc.Onc also suggests that despite NICE guidelines to stop at 5 years he would support continuing for 10. (on the basis if it reduces risk of recurrence for 5 years -it should reduce risk at 10).I thought BC (in England, at least) followed “best practice” protocols, so I’m a little perplexed as to why some of us are treated slightly differently.
Cherry

I’ve been on tamoxifen for a year. i was told by my onc that they will review it next year with a view to changing to an AI. Although early last year my onc thought that I was going through the menopause (at 42), I’m still pre-menopausal, my hormone screening blood test was inconclusive and I’m still getting periods, albeit only every four months - but they are regularly every four months, how weird is that? I must have some strong homones to survive chemo and tamoxifen! Who know what my hormone status will be by jan next year?

Hi Cherry

I’m very similar in that I went straight onto Arimidex. I’m 42 and apparently hormone tests show I’m post-menopausal, I had a Hysterectomy when I was 30, so with the chemo it was certain I would go through early menopause.

I would doubt if I am 2 years post menopause though??? Which is interesting in view of what Janet has been told!

It is very perplexing as to why we are all treated differently, though.

Lynn

Lynn…arimidex v tamoxifen -did you have ovaries removed with your hysterectomy ?Maybe it is something to with stage/grade then, as I’m the same as you - though that still dosen’t answer the question about being 2 years post menopausal -I’m not even sure it’s down to onc’s preference since another lady on here is being treated by same onc as me and has been put on Tamoxifen first. Anyone got the answer?
Cherry

Cherry No, I was able to keep my ovaries as my problems were confined to the cervix and uterus, so had vag hyst.

To be honest the whole journey through this ‘annoying’ (my polite excuse for it!) disease seems so very random. Chemo, different ones for different women, yet the same stage and grade… it’s probably a lot to do with the individual Onc and the current research trends??? Who knows???

Lynn

mystified this is so mystifying. Cherry will you ask the Prof whether you’re on Arimidex because of the connection with uterine etc cancer and Tamoxifen 'cos if that’s not the answer I don’t know why we are being treated so differently. I agree that there must be best practice protocols so why the discrepancies.

Frances

hi all
Cherry has redirected me here after posting on another forum - cheers Cherry.
I am 44 and my periods stopped during chemo and i have hot flushes since. I have just been put on to Arimidex. I’m sure that no hormone test was done - the onc just said your post menopausal arent you and i explained re periods etc.
Was going to ask if any one suffers side effects from Arimidex?
However I am now worried that as no test was done is this going to ‘do more harm than good’ as Kelley suggests?
Dont see onc until a week on mon for rads planning but will ask then.
Norah xx

post- menopausal… Norah -if you could get an answer to this from your onc, i would be really grateful to hear it as I’m in the same postion as you. i.e , stopped periods at cycle 3, Onc said “Your’re menopausal aren’t you” (with me explaining no period since cycle 3). I was put straight on arimidex but never had a blood test to check hormone levels. Sorry if this is repetitve -can’t always quite remember what I’ve babbled on about on other forums!
Cherryx

post menopausal… Hi Girls

Just to add to the confusion I was diagnosed at 45 4 Fec 4 Taxol periods stopped after 3rd Fec took tamoxifen for 10 months then Arimidex which I have been taking for 14 months and last week had my first period (albiet very, very, light but definitely there) contacted onc and had blood test Thursday to see whats happening with my oestrogen level will see her on 7th March to discuss result and options so will keep you posted.

Also spoke to breast care nurse who said it really can take two years before body gets bake to normal after chemo, my period arrived exactly 2 years after finishing chemo!

Now worried should have stayed on Tamoxifen although have felt better on Arimidex perhaps they will keep me on Arimidex along with Zoladex to stop oaveries working, who knows!

Take care
Love Lesley xx

periods!- now that really does worry me , the thought that your periods can return after that length of time and believing you were menopausal all along.Glad now i’m off to have my ovaries removed next thurs (-bet they nick my bladder or puncture my bowel-ever the eternal optomist ha ha ).
Cherry

I had a hysterectomy 2 years before my diagnosis but retained my ovaries. I had no symptoms of menopause but following chemo, a blood test showed i was postmenopausal.
I was told i’d be on Tamoxifen for 2 years then arimidex but was told that i would need to have my blood tested again as the previous one could be chemo induced and not necessarily permanent.
Kelley

periods HI Cherry

How come you are having your ovaries removed? Hope you don’t think I’m being nosey, obviously very interested now!!!

Love Lesley x

Hi lesley -no, I don’t think your’re being nosey. I think we have to do/ask anything we can to try and keep ourselves safe and well.
I am apt to get “bees in my bonnet” about things. My maternal grandmother died of ovarian cancer and although my mother and both sisters are all currently well, I just “knew” I would get ovarian cancer if i left them in there.(As I say -the eternal optomist!). Anyway -having requested to have them removed in January I was a bit shocked at the speed I received the surgery date (thought I’d be waiting months. Now I think that they think I AM at risk!! -no pleasing me. Ha ha.
Cherry x

I was on tamox for 2 years… Was dx at 45 and periods stopped after 2nd FEC. Was put on tamox as onc said periods may return. I was tested after 18 months and was peri-meno then at 2yrs I was menopausal. Onc put me on aromasin as she said trials had shown this was best option after 2-3 yrs of tamox. I had read about this so was pleased she was on the ball. (It was in the news last week and my mum rang to say oh theres a new drug! No mum I’ve been on it a year! Takes time to filter through!)
So some of you about to switch might like to ask about aromasin (exemestane) as an option.
BTW I was told if my periods did return I would have to go back on tamoxifen.
Julie xx

just a little question for Lesley - recon Hi Lesley,
I was just looking around,[having one of those can’t sleep nights!]. I had a look on your profile and saw that you had your recon done straight away and then had rads, I was advised against this but now, alomost a year later, I am looking into haviing my recon done. My question is; how have you found the implant? I am very intersted in having an implant only recon, possibly a becker style implant - less surgery - but am worried about the amount of stuff in print and oppinion of docs that this is ‘not so successful’ recon as the capsule thingy that can happen. Sorry I can’t remember the clinical term, but when the tissues go hard… anyway it sounds as though you are really pleased with yours, so I am interested on any advice you may have.

All the best,
Scarlet. xx