Message for Karen
Message for Karen Hi Karen
I just read your re[ply about arimidex bone ache. When I looked at your profile you had exactly the same diagnosis and treatment as I did and I noticed you were also the same age as me when you got it.(42).
You said in your reply that you were still premenopausal now 3 years later so they will not give you arimidex. I hav enot had a period for 16 months . I had the last one in the middle of chemo . I have asked if I am post menopausal so I can come off these awful tamoxifen but my blood tests said i was still premenopausal. I just wondered what your onc had said about this because I would have thought that after no periods for 16 months that was it?? Did yours ever come back?
Love
Alise x
Hi alise Unfortunately I had a hysterectomy 8 yrs ago so have no periods…still have my ovaries though, so can’t really help on that score.
I had a hormone test last year which was 499 but this year was 1000…but my BCN said that Tamoxifen gives a false reading, but considering havung had the hysterectomy and chemotherapy she was pretty sure i was going into if not already in menopause…trouble is not having a monthly cycle makes it difficult to establish where I am…hot flushes and night sweats have started again though after a break of about 2 mths…have been having acupuncture for them…thought…hey this really works they’ve stopped…then had hormone test and thought…perhaps it wasn;'t the acupuncture working after all lol!!
Don’t know if thats any help to you…sorry I do ramble on a bit lol
karen x
Alise
can i butt in here and say Hi first of all.
I am not much older than you and have had similar experience to yourself.
Started chemo Jan 2006 last period end Feb 2006.
Tamoxifen since end of July 2006 still no periods.
Onc is adamant she wont do a blood test even as tamoxifen gives false readings and as i was pre-menopausal before DX she wont say i am post menopausal now.
I hate tamoxifen with a vengeance the weight gain and hot flushes are horendous. They should have a tamoxifen support group.
I see a gynaecologist in July and am goign to ask for removal of my ovaries and womb then i will knwo i am post menopausal and can have other drugs instead of tamoxifen.
Ruth
Message for Ruth Hi Ruth
It sounds like we had our treatement at the same time - were you at Christies? I live in Manchester.
Regarding the menopause thing my onc has said he will do another test in 6 months but would not consider switching me to armidex until 3 years have passed since when I started taking the tamoxifen (July 2006 like you).
I have truly questioned whether to stop them as I have to live on a permanent diet to stop putting on weight and my fingers and feet are all puffed up with water retention. My GP has given me water tablets which do clear it but as soon as you stop them it all comes back!
I am like hot flush central and feel about 100 years old.
When I spoke to onc about this at last check up he said tamoxifen only gave me about 4% and as my prognosis was good I could stop them if I wanted but it was up to me - he said he could not comment either way. I reall ylike him as he is really honest.
I thought about it but I know I cant stop them as 4% is 4%. SOmetimes I question the decision to have chemo as well as that is what threw me into the dreaded menopause in the first place but again it was a question of how do you live with it if you dont. I am a natural worrier even before this so I had to do it.
Basically it’s all a pile of cr*p!!
Let me know how you get on.
Alise x
Thanks for posting alise
Had to agree with you when you said its a pile of C?*p, totally agree.
No i went to the Linda McCartney centre at the Royal Liverpool Hosp, excellent place with first class surgeons, our oncologists come from clatterbridge hosp which is a 1st rate hosp.
I hate the flushes , mine have suddenly started to make my face absolutely beetroot red and i feel i shall explode.
Basically i think people have an attitude ‘your alive arent you so just cope with it’
I wouldnt have the confidence to stop tamoxifen although i agree i am swelled on it and i am older than you i feel 120 (haha) lets keep our humour it keeps us all going.
Hugs Ruthx