Hi there
It looks like I may have developed another blood clot in my arm and I started tamoxifen 9 days ago. I have a history of this but my surgeon has said that if it is I won’t be able to continue with tamoxifen.
I am very worried as my cancer was 8/8 ER+. I am not post menopausal so don’t think I would be able to have the other drugs?
Has anyone been offered anything else premenopausal?
Elinda
Elinda, I couldn’t tolerate tamoxifen - too many SEs and I’m not post menopausal either (and ER+7/8 PR+ 8/8). I’ve been switched to Zoladex injections, to switch off the ovaries, and Arimidex. I’m much better on these drugs. Still cream crackered, but generally better and I feel like myself again now, which is a relief.
I’m also thinking about asking for an oophorectomy, to save faffing around sorting out the injection every 4 weeks (and also that would mean only one drug, not two).
Good luck and let us know how you get on.
Sal x
Thanks very much Sal. It’s good to know there is another option. If it turns out to be a blood clot I’ve got to change treatment I think I’ll go down the oophrectomy route. I had a hysterectomy only 2years ago but my ovaries were left so I didn’t go into premature menopause - wish now they’d been removed!
I’m so exhausted at the moment that I don’t know what is what and still have radiotherapy to go. Are you further down the line?
Elinda x
I had surgery in Feb and rads in May/June. I started tamoxifen in March and by late May I was really struggling, so had a break for a month. Went back on it for a month, then was switched at the end of July. So I’ve been on these drugs since then. I did stop the Arimidex for 4 weeks, at the suggestion of my onc, but it didn’t make much difference, so I’m taking it again now.
When I stopped the tamoxifen, it was in the middle of rads and within a week I was bouncing around like Tigger, so it’s definitely the drugs that made me tired. I’m not sure if it’s the drugs or my body’s reaction to the lack of oestrogen (or both)that causes the fatigue, which is why I’m considering the oophorectomy. I’m 53, so will almost certainly be post menopausal by the time I finish Zoladex in 2 years, so I feel I may as well get rid of the ovaries now.
That’s interesting - strange how we all get different side effects. I used to have to take a high dose progesterone for endometriosis and that totally wiped me out (my cancer also turned out to be 8/8 PR+). I think the balance between oestrogen and progesterone seems to be important so when we take something like tamoxifen to stop oestrogen production it throws it out.
I have read that progesterone goes to nothing once menopause occurs so that will be good for those of us who are PR+.
take care
Elinda x
Hi my cancer was ER,PR+ (and HER +). After surgery, chemo and rads I was told that I would have tamoxifen as not started menopause yet (I’m 45). Before I had my daughter I had some late miscarriages and was diagnosed as having antiphospholipid syndrome which caused clotting in placenta. I’ve not had any other symptoms, and was only put on asprin and heparin during pregnancy. As a result I have a risk of blood clots (probably very slim), and onc didn’t want to risk it. Didn’t start tamoxifen, and like Sal have started zoladex monthly injections, arimidex and calcium/vit D. I didn’t have to push for an alternative treatment and onc seemed to suggest that this is just as effective.
Only 3 weeks in, and no real side effects yet - except become very crabby (but might not be a new thing!), and menstrual migraines have returned (absent during chemo) but hopefully they will be gone soon.
Alice x
Thanks Alice and Sal
I feel so much calmer now knowing that there are other options. I am concerned about headaches and migraine with any treatment as I’m very prone to those too. strangely when I was the progesterone treatment prior to diagnosis I didn’t have hardly any - perhaps they are hormone related.
take care
Elinda xx
Elinda
My Mum was prone to thrombosis and had Tamoxifen. The doctor put her on the blood-thinning drug Warfarin.
Ann x
Hi Ladies,
Excuse me butting in, but i don’t think the tamoxifen ‘switches off’ your ovaries’ oestrogen production. The way i understand it is, you still produce oestrogen as normal, but the receptors on the surface of any tumour cells (which normally respond to oestrogen) are ‘plugged’, so the oestrogen doesn’t stimulate them to grow.
I’ve been on it for nearly 2 years, and I’m currently seeing a gynaecologist cos of really heavy periods. Radical hysterectomy (including ovaries)is one of the things under discussion, but my onc is concerned about the awful side effects of suddenly losing your ovaries overnight. Some ladies on this forum don’t seem to have responded badly to it though.
Jacquie x
Elinda, I do have quite a lot of headaches on these drugs, but I did on tamoxifen too. However, most of them aren’t bad and I have found if I drink 3 litres of water a day, I don’t get so many.
Jacksy, you’re right about tamoxifen blocking the oestrogen. It’s the Zoladex that I’m having that switches off the ovaries and therefore stops oestrogen being produced by them. The Arimidex stops any oestrogen being produced by the fat etc.
Does anyone know of a replacement for tamoxifen for someone pre-menopausal?