Hi,
I am currently on nolvadex-d (type of tamoxifen) and have been told I will switch to aromatase inhibitors when I am post menopausal. My onc says this is when you have had no periods for 2 years and I just wondered if this is his view or standard. I am currently at 15 months but he won’t even do a blood test until the 2 years is up. I know AIs are supposed to have better stats so I am keen to switch when I can. Your thoughts on tamoxifen or AIs would be appreciated so I can ponder over it before I see him this week. Also which AI would you go for, if given the choice. I believe I will be offered femara.
Thanks and hope you are ok just now
Lily x
Can’t help you with this Lily. I have been on Tam for about 2 and a half years. When I was having really bad side effects in the beginning, the Breast Care nurse suggested to the Consultant that they do a blood test to see if I was menopausal and he said that they couldn’t as it would be inaccurate as Tam gives false readings. I am 46 years old and happy to stay on Nolvadex now the hot flushes have lessened.
Debbie
xx
Lily, it is ‘standard’. You have to be post menopausal for an AI. I was on Nolvodex D for 2 years (I became post menopausal because of chemo) and changed to an aromatose inhibitor after 2 years.
Tamoxifen is fine as long as you are pre - menopausal when you start, as it acts in a different way with the oestrogen.They will test after 2 years to ensure you are post menopausal, as the best ‘regime’ seems to be 2 years + 3 years.
I was given Arimidex to begin with but struggled with joint pains. I put up with it for 9 months but they changed me to Aromasin in September and by Christmas it was settling. At least now it’s livable with although I still wake up with stiff fingers/joints it’s nowhere near as bad.
Good luck.
Caz xxx
My partner has not had a period since the early days of chemo -almost 4 years ago now. She has been on Tamoxifen since May 2005 and we have been asking for the last year whether she can go on to Arimidex. She has had blood tests every six months after her onc appointment and these have been showing her as peri-menopausal -but very nearly menopausal! At her last appointment onc suggested that she come off tamoxifen for 3 -4 weeks, since this may affect the blood test, and that she have another blood test after that. He seems keen to move her to Arimidex -and I got the impression that he considered 3 years on Tamoxifen, followed by Arimidex, to be best option. She has been having some quite nasty side effects on Tamoxifen - so would be good to change.
Best wishes,
Sharon
Thanks for the replies, will see what he says tomorrow.
Lily x
I have not switched from Tam yet , but at 62 started spotting had internal ultrasound and bi opsy but were unable to harvest many cells
Look like thickening of lining of womb but said obviously cannot rule out cancer . I have been going out my mind with worry for a week and have another week to wait, I have only been on Tam six months… I am very scared. Told I will need hysteroscopy and D&C whatever. I just cannot cope with the waiting . Have brought my appt forward with onc because if it is Tam will want to change, I sometimes wonder if all this is worth the battle , would I have been better just to bury my head in the sand, cuz feel this bugger of a disease is gonna get me somehow. Have no more fight left in me
Bobbie
Hi Corsa
I understand that you are feeling very anxious at the moment, this is perfectly normal. I just thought you might find it a great help if you give our helpline a call.
If you feel you can call them, you will find that you can talk in confidence about your fears and concerns and the team on the helpline are happy to talk to you or just be a listening ear if you feel you want to offload.
Breast Cancer Care are here to support you so please use us if it will help.
The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number is free phone 0808 800 6000.
Kind regards.
Louise
Bobbie,
so sorry to hear you have more c…p to worry you. Keep us posted how you get on. I thought you switched from tamoxifen when post menopausal, perhaps there are other reasons. Anyway will be thinking about you and hope for the best news. Try not to get overwhelmed just yet until you know more, easily said I know but remember we don’t have to have a womb to live, unlike some organs, so may be more options if you need them
Best of luck
Lily x
Hello everyone
Just to put a spanner in the works re switching from Tamoxifen.
I was only on this for 9 months before being switched to Exemestane.
Iwas diagnosed Jan 2006 with grade 3 invasive Er positive 8/8.
I had Chemo followed by Rads. no operation. My last period was in March 2006. I Started tamoxifen in late June 2006 then had a blood test the following October. When I went back in April 2007 they told me I was post menopausel and put me on Exemestane which I have been on ever since. My Oncologist never mentioned false readings with taking tamox and said that the reason he tested me was to make sure I was on the best drug for my diagnosis and he also knew that I was struggling with the side effects from Tamox. Yes my joints ache but overall I suffer much less with side effects from Exemestane.
Hope this is some help
Han
Hi
I am 49. post men. and now on Arimidex. Diognosed with primary bc a year ago. Was initially put on Tamoxifen for 5 months in spite of post menopausal bleeding 13 months ago and thickening of womb lining after biopsy AND d&c. I had been told by bc surgeon and gynea that I should not take Tamoxifen. Onc. a law unto himself! Onc. did not believe I was post men. but after 2 blood tests showed I WAS. He did say at one point that AIs were not proven to be more effective than Tamoxifen, it had not occured to me that they were or were not, I was concerned that I had been told I should not take Tamoxifen by two other consultants! I did get pretty fed when I seemed to be talking to brick wall. Certainly did not help my mental health which has suffered this last year. Not sure that my post is of any help to you.
Alice
Hi Lily
I took Tamoxifen for a while years ago (there was nothing else available at the time!) and for me it was the devil’s spawn of a drug. The hot flushes were vicious and, like other ladies here, I had problems with bleeding which got heavier and heavier and I finished up having an emergency hysterectomy where my womb was found to be twice it’s normal size.
I know that at the time Tamoxifen was a big step forward, and has saved many lives, but I do sometimes wonder if its cheapness (it’s now out of patent, I understand) leads to it being over prescribed and whether the AIs ought to be used earlier and more often. I remember articles in the Press a few years ago about the non-availability of Arimidex on cost grounds, despite it’s known advantages…
X
S
i agree with Alice, i felt that anytime i spoke to my onc, well, i just found him to be rather bombastic, so i just see my surgeon for everything now. i think tamoxifen is very good though, and i know a lot of women who took it up to 30 years ago, and it still suits some women, but Bahons is right when she mentions the high cost of als, my gps had a fit when i was changed by my surgeon from arimidex to aromasin as there is a £20 a month difference in price, but as far as i am concerned, i am hopefully on the best i will get, even if i find the side effects unbearable at times, i feel that this is something else that is totally ignored by some gps who do not even read what side effects we can get.
Alisonxxx
Hi All
I ahve been on tamoxifen since June 2006. I went back to onc to say could he test if I was post menopausal ( 42 at dx but chemo put me in a menopause). Blood tests showed still peri menopausal even though I not had a period since March 2006.
Bloods to be done again in May and then I may switch to arimidex if post meno.
However . . .onc ( who is v good and at a world leading hospital for cancer) said that if you have had chemo tamoxifen are just as effective. He said that the trials that were done comparing tamoxifen and AI’s were done in women who had not had chemo so I should not worry about staying on tamoxifen.
Conflicting stories eh??!
Love to all
Alise x
I saw my onc on 4th Feb. I was diagnosed in 2006 aged 47and my periods stopped after my 4th chemo. I’ve been taking tamoxifen for 2 years and have n’t had a period since Nov 2006. However my onc decided to wait another year before deciding to change to AI as there is a chance the latter could stimulate my ovaries into working again. It was explained that this is because I was very definitely pre-menopausal and having regualr periods when I started chemo. That’s fine by me as tamoxifen has n’t casued me any problems and definitely seems to be doing it’s job.
Geraldine