tamoxifen

Hi all, Any post menopausal cyberpals on tamoxifen , I am due to start it next week and looked through site and it seems to be mostly pre menopausal on discussions. I am ever so scared about starting on it and would like some feedback from women who like me are 10 yrs down the line from the menopause.
I feel I am continually scared of everything lately , not just cancer ( in a state of permanent anxiety.) My mind never seems to stop and it’s all rubbish, I hate myself for being so stupid. Love to all Bobbie

Dear Corsa,
I am going to start tamoxifen in the near future, and also had the menopause ten to thirteen years ago. Like you I am very scared. I don’t think I would have been so frightened if I hadn’t read dufferent threads relating to it and the side effects other ladies have experienced.
I can relate totally to the feeling of being scared all the time. My daughter came to see me the other evening… She set down and said “mum, I want to tell you something”. I can’t believe this , but I was almost hysterical and just kept shouting at her “don’t tell me, don’t tell me”. It was awful particularly because my eleven year old grandson was there and I would never, ever normally let him see me in such a state. All she wanted to tell me was that she was to go on holiday soon.
Sometimes I feel that if I turn bad news will be there.
I will say that throughout my life I have had more than my fair share of tragic news but I have never been affected like this.
It feels stupid, but of course it is not. We have had terrible dx , that we never imagined could happen to us. I think that this shock stays with us for a long time, particularly when we are having to cope with awful treatment.
I hope that for both of us the tamoxifen will be an easier experience than we anticipate and that somehow
a sense of 'normal ’ reality will return.

Margaret

Hi naunamh Margaret We must be kindred spirits you and I. I have had some awful experiences through life and now this it has stripped me of having any faith in anything. I used to enjoy many hobbies but find it impossible to motivate myself any more. Keep in touch love Bobbiexx

Hi Bobbie
I am 48 and about 2+ years post men (although it took a blood test before to onc. believed me!) He had prescribed Tamoxifen before confirmation of blood test but still said to take it for a couple of years initially than would maybe prescribe AIs. So I am in Tamoxifen have been for three months, yes hot flushes and yes joints playing up but not sure it is the Tamoxifen, since joint probs,aching legs, hips etc. before this stuff. I had probs with post men bleeding and have thickening of womb lining so I am worried that there may be probs. with taking Tamoxifen so I am having to go back to discuss with onc. The last time I saw him I was so down I could not discuss anything with him, so nothing was discussed at all, I suspect he just thought I was just very rude and an awful person. We worry about everything and nothing.
Are you thinking that you should have been prescribed an AI as opposed to Tamoxifen? Have you discussed this with your onc.? I think there are quite a number of women on her who are post-men and on Tamoxifen.
Hoping you have a good Sunday Alicex

Morning Corsa,
Oh yes I recognise no motivation. Sometimes I question wether I am tired, lethargic or bone lazy. But at least I have started to get my flat back in order again.
What hobbies do you have? I used to make greeting cards and sell craft materials. I really liked doing this because there was no responsibility and I could go out when I wanted to sell, rain permitting. I also enjoyed lots of others cross stitch and knitting included.
My onc. suggested three years on tamoxifen and then two years on armidex [think I may have got the name mixed up], Are you just given a prescription for the tablets? Do you start taking it after rads? I’m on a delay starting these as the steroids gave me diabetes and the diabetes gave me blurred vision, so I am waiting for this to settle before marching?? on again!
To be honest my body screams no more, I can’t bear anything else being done to me.
What I would like to do is get in the car and drive into the sunset

Margaret

Hi Alice thanks for getting back to me . No I never thought about any other medication as ONC said Tam He is a proffessor and is not just liked but loved by all patients and staff. So I have to trust him . Obviously I do’nt want to die …do any of us!!! BUT sometimes I get to the point where I find myself saying I cannot stand anymore … wish I could take all this in my stride .Do you or anyone else feel like this. ??? Onc did say if I ca’nt tolerate Tam there are others but I am afraid I will psychologically talk myself into not being able to tolerate it as I am so b/dy scared of everything Love Bobbiexx

It seems from what I have heard and read that the current thinking is to put us on tamoxifen for 1-2 years followed by arimidex. I am just through men. and my oncologist has put me on tamoifen for 1 year, I will then go onto arimedex.I was scared of taking tamoxifen but the only side effects I seem to get are a dry mouth, slightly odd taste and afew hot flushes.
Best of luck
Alison

Hi Alison So glad you are coping with Tamoxifen it all so gives me encouragementto hear you say that. Thanks for that . keep in touch Love Bobbei

Hi all I am 52 was pre menopause when DX have been on Tamoxifen for 7 months … I have had no periods since the first day of taking … some joint pain but that is easing up now …blurry eyes …no hot flushes ,just dreadful mood swings which i dont know if i can blame on the meds as I was a moody cow before dx apparently .I just get so down that I donrt want to talk to anyone …I apparently I was told in work the other day “when i have got one on me …I make the whole team miserable !!!”
Well sorry !!
as for the tamoxifen … I dont mind taking it as I know it will hopefully stop the little bugger coming back !!!
keep in touch peeps
Mazzy P XXXXX

LOL Maz about the moody cow bit - I empathise, but I’m not sure it’s the tamoxifen that’s causing it!
Bobbie, the benefits of taking tamoxifen for most of us far outweigh the side effects. I’ve been on it for nearly a year now and although I don’t like the hot flushes and it has made me prone to weight gain, i have no intention of stopping it. It significantly reduces the likelihood of recurrence. I think of it as my little insurance policy, Good luck with it - I’m sure you’ll find it a lot less daunting than you expect.
Sarah
XXX

HI all you Tammies… Have not started on Tam yet hospital pharmacy out of stock. ( Naunamh ) Margaret I will be starting taking Tam during Rads, So fingers crossed. Cannot believe a hosp Pharm have no Tams.
My main hobby is genealogy but I do x stitch , make childrens cushions some quilted , make cards , I am slowly getting back to reading but other hobbies gone by the board . I really must try and force myself to do things but I feel just like you feel my body is never my own or my life for that matter and I want to run away BUT you ca’nt run away from yourself. Love to all Bobbiex

Hi Corsa,
You are so right, wherever I go I take me, which is a shame but it can’t be changed.
I cannot believe that the hospital had no tam for you. It does make you wonder what happens in emergencies doesn’t it?
How long do you need to wait before you start now? It would have made me feel very uneasy leading up to THE day and then a delay.
The district nurse who comes to flush my line told me to ring the chemo unit about having the line removed and starting rads etc., but I have no hospital appts this week and have been looking forward to a whole week off, so I don’t think I will until next week.{Perhaps later!!]. {Perhaps they have forgotten about me and it will all go away!!!].
I was interested about your hobby genealogy, just recently I looked on a site that helped with this. My birth name was very unusual and I have never seen it anywhere except on this site.
The trouble is that if you force yourself to pick up on hobbies they sort of become ‘must do’ don’t they? But just discussing this with you has given me a little inkling to get started.
Let us know when the tam starts and hang on in there.
Margaret

Hi Corsa

I am 54 and have been on tamoxifen for 15 months, with a view to changing to an AI at the end of the year. I have been completely well on it, although the first six months were pretty full-on for hot flushes and night sweats. Now I only get a couple a day, and often nothing at night. There is also the risk of weight gain during that first six months so you have to be pretty hard-line on the pudding front!

Other women on this list recommended the tamoxifen brand Nolvadex D (rather than standard generic tamoxifen) as having the least problematic side effects so I’ve always asked to be prescribed this brand. I think it’s something to do with other stuff in the pill that somehow makes it better tolerated. I don’t know for sure if this has affected my experience of the drug or not but my onc seemed to endorse this view when I mentioned it to him.

It has gone so well for me that now I dread the switch to Arimidex.

Good luck and hope it all goes ok for you,

Rose

HI Rose and Margaret,Got my tamoxifen today but decided to see hospital Doc tommorrow before my 5th RADS !!! 20 to go. I have decided I would prefer to get Rads done and then move on to TAMS. I seem to only be able to cope with one thing at a time and just incase I get soreness do’nt want to put up with side effects of Tam as well. See what Doc says tommorrow… Regarding Geneaology I had 14 days free on Ancestry .co.uk .Then decided to subscribe £70 per annum . I logged on Oct 06 and it has kept my mind distracted a little when I was diagnosed with BC. I have gone back to 1680 with my family . My hsbands family have gone back to 1780. I have also found Family I never knew existed and we all keep in touch. Love Bobbiexxx
per annum

Hi Corsa

Sounds like a good idea to wait until you’ve finished rads before starting Tam - in fact this is what my onc suggested, saying that use of Tam during r/therapy can increase the risk of skin thickening on the breast afterwards. I’ve not seen that mentioned anywhere here though, and lots of women seem to have them at the same time.

all best

Rose

Hi Bobbie,

What happened with the tam.? Have you started it or are you waiting until you have finished the rads?
My district nurse told me again to phone the onc because I still haven’t heard about rads or the Hickman line coming out. It seems that it should be done within a certain time scale, so I will ring today as much as I don’t want too.

best wishes
Margaret

HI Margaret Duty Doc at cancer centre said probably best to start it last two weeks of Rads cuz it can take a couple of weeks to kick in. MY onc is on holiday this week so he is gonna have a word with him next week and see what he has to say on matter. love Bobbiexx

Hi Corsa
Oh my goodness i rang re radiotherapy and I think they must have forgotten about me as they rang five minutes later with an appointment for this Monday very early.
Off I go again through the whole fear thing!!!
When do you start your rads?
love Margaret

Hi Margaret have had 6 doses 19 to go. Your not on your own ref fear, I lurch from one to another. Boob at present feels hard and a bit achy, slapping the Aloe Vera on cuz i want to avoid burns. Will be thinking of you Monday. Zapping both scars boob and lymph area… I do’nt like having male radiographers but I am sure it does’nt bother them. think the fact that my boobs are enormous is more embarrassing. with chaps about. I find the daily grind a bit of a battle , Took my husband 18 months ago Rads for prostate cancer, he had 4 weeks . Cannot take it in the tables have turned. I suffer from panic attacks and I coped very well through his cancer, had to be positive for him , WHY ca;nt I do it fior myself.
Love Bobbie

Hi ladies

I am 56 and the Tamoxifen and Zoladex put me into the menopause after my op 2.5 years ago. I did switch to Exemestane for 4 months last year as this has slightly better outcome rates, but my bones are so dodgy with osteoporosis in my spine that I switched back to Tam as it is better on the bones.

Used to get hot flushes day and night but now very rarely do they wake me up and overall they are fewer in the day. No other problems but tiredness - and like some of you I do question if its lack of motivation or just being lazy!

No sex drive either I’m sorry to say but I did have my ovaries out last year to so nothing much left to perk me up in that direction!

I’m sure its not going to be as bad as you think. Good Luck, Grace