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Original poster

Tamoxifen - advice please !

562 replies

MargaretMountford · 27/05/2009 11:20

Am going to be starting Tamoxifen shortly, was just wondering whether anyone else is on it and can tell me what it's like ! thanks !

OP posts:
MaryAnnSingleton · 03/07/2009 09:07

hope all ok today Cakes..how is hair ?

Cakesandale · 03/07/2009 09:36

Hi MaryAnn

Not sure about the underarm thing - maybe you do have to be zapping the underarm to make a difference, I suppose that would make sense. Sorry not to be more help. But I am sure you do not have an odour problem - I was in hospital for 10 days with broken bones once, in a really, really hot summer, heating on in the ward regardless, I was literally sliding around on the bed in sweat (sorry, TMI) and was not allowed to bath or shower, bed washes only, but my mother and dh SWORE I did not smell. Sometimes we wash and spray more than we really need to.

My head now has a number 3 shave all over. We did it just in the nick of time, I have washed my hair (head, really) this morning, and the bath was black with fallen out stubbs of hair. The fall has really accelerated. It does feel better, but it was a bit tough going out to the school this morning in a scarf. That's just self-consciousness, though, and will surely pass. Friends at the school were really sweet.

Did you get to the desk at all yesterday? It can be hard to self-motivate, can't it? I am going to start trying RIGHT NOW!! Wish me luck!

Hope you have a great weekend. I certainly plan to try! xx

MaryAnnSingleton · 03/07/2009 09:51

oh well done you and am sure the school gates thing will become easier- everyone will be kind too I'm sure, but I understand the self consciousness bit.
I did do a bit of work - I am better under pressure really, not too much, but the right amount motivates me...a flicked through a few pages to see that I am now approaching the end - need to finish,then go back and check that everything is right !
Have a lovely weekend too xxx

MaryAnnSingleton · 03/07/2009 14:22

the radiotherapist today said I smelled of something nice !! feel soo much better now.I told her it was Dior Sweet Sun and she hoped I hadn't sprayed it too near my left side !

Cakesandale · 03/07/2009 16:01

There you go, then, definitely still fragrant! Phew!

Abermum, if you are here, I am sending you lots of positive thoughts for Monday.

Have a good weekend all!

MaryAnnSingleton · 03/07/2009 17:14

good wishes from me too abermum

Cakesandale · 07/07/2009 12:35

Abermum - are you home yet? How are you?

Cakesandale · 09/07/2009 09:51

Hi MaryAnn

How are you doing? It must be getting towards the end of your radio now. How is the skin holding up? Have you taken any decisions yet about the Tamoxifen?

I have just taken my second dose of chemo, still not too bad altough precious little sleep last night, I kept waking up every 45 minutes with my mind racing (Ithink that is the steroids) and with my throat feeling odd. Hair still dropping out, I nevewr knew I had so much.

We have a big weekend scheduled this weekend, with four parties and a fete. Bet I don't get to many!

MaryAnnSingleton · 09/07/2009 13:41

hi Cakes - hope things stay ok - hang in there - not sleeping much must be very hard though.
Just 3 radios left and am fine - tired but that could be anything and am a bit red and blotchy..they pointed out that underneath my breast is sore looking and told me to put more aqueous on,which I will do. Am still ambivalent about tamoxifen but will be seeing BCN to discuss in a couple of weeks. Have been looking at bc forums to see about length of radiotherapy and it seems to vary a lot, though the recommended norm appears to be 15 over 3 weeks - someone said their onc. suggested it was done by size of breasts and others said it depends on where the tumour was in the breast/ size of tumour as to whether you get booster shots of radiation. Still confusing but am sure it's all worked out for the best outcome. 15 rads would mean a slightly higher amount of radiation each time,someone suggested.

Cakesandale · 10/07/2009 09:39

Hi there

Well if you still have any questions ask your bc nurse because she will have all the info on what you have been prescribed and why - and if she doesn't she will find out. Just don't worry about it because that is so stressful, which is the very last thing you need.

I am glad you are getting near the end of your treatment, that must be so nice.

How is the book going?

I have to say, our chemo suite is really civilised, all things considered. I had to have a couple of insect bites checked this time around before having my treatment, in case there was infection (bites always swell up like a balloon on me, the little gits, who needs mossies anyway?). It took ages, so when I got back to the department I had missed my slot and so they gave me lunch, which was really unexpected it was lovely. (Dh had to make his own arrangements, though And then I got a nice comfy chair, a magazine, and a lovely warm heat pad to put round my arm to make the stuff go through my veins quicker and put less strain on the site where they went in. They really do make an effort, don't they. (Or it may just be that I am at a very new, very smart teaching hospital - lucky me!)

Have a good weekend - and focus on a treatment-free future, which is clearly in sight for you now!

MaryAnnSingleton · 10/07/2009 13:59

hi - sounds as though you are being well cared for - that's good. Book is almost finished thanks - am just checking everything and hope to deliver the drawings on Wednesday, the day after final radio.

Cakesandale · 13/07/2009 10:47

Final radio tomorrow. Wow! Good for you!

So pleased -now you can move on!

We had loads of parties to attend this weekend - don't know whether to be proud or ashamed that I attended every last one, and raised a glass at each. Bit tired now, though. A bit of pure living for me for the next few days, I think.

Take care!

MaryAnnSingleton · 13/07/2009 18:19

thank you ! just tamoxifen which I need to tackle next...good for you though, it's important to just step away from bc sometimes and do stuff that's a bit jolly and normal - I guess as long as it's not OTT, but am sure you are looking after yourself. Hope abermum is doing ok.

Cakesandale · 14/07/2009 09:49

If you are there Abermum - fine if you don't want to reply, but just sending you positive thoughts and good vibes. Hang in there! Each time I send myself a positive thought I am sending one for you and one for MaryAnn too.

Take care!

dreadingtheholidays · 15/07/2009 10:00

cakes- i am around- have had to change identity due to a freak stalker! feeling awful atm- but hopefully will start to feel a bit better again soon!

MaryAnnSingleton · 15/07/2009 11:16

oh no !! and very sorry to hear that you are feeling dreadful - hope things get better v soon x

Cakesandale · 15/07/2009 13:39

Bloody hell! The last thing you need - but loving the new name. Am dreading them myself!

So very sorry to hear you are feeling bad. I am sure that lovely dh of yours is being as supportive as usual, but it is so hard to keep going when you feel crap, especially with a relentless little one as young as yours. Really hoping that things take an upturn soon.

I had a bit of a milestone this morning: I had to see a client (who did not know about my treatment) as he wanted to talk about giving me some extra work. Hooray! But I was a bit (very) worried about what he would say when I appeared in a scarf (wig makes me look like a drag queen) - but he was lovely. No prying questions, and no suggestion that maybe I might not be able to cope after all. Just a bit of friendly concern.

What a pleasant surprise!

Will keep sending you positive thoughts - clearly they are not doing much good so far, but you never know, I might get the hang of it.........

MaryAnnSingleton · 19/07/2009 15:49

hello ! top tip - put a silk hanky in your bra to stop the burnt bits rubbing - it is much more comfy with it. I look dreadful though - purple !!

MaryAnnSingleton · 19/07/2009 15:52

and thanks for your kind thoughts too - consider them returned to you too. Your client sounds lovely btw.

Cakesandale · 21/07/2009 11:05

Hi MaryAnn

Sounds like a fab tip, will remember it if I ever get that far! It seems like an age away at the moment. Very sick of being bald, and have only been so for about three weeks. Months to go yet. Aaargh!!

I must say, the burning does sound awful, hope it doesn't last for too long. You should be on the home stretch now.

I have got some silk hankies somewhere, must dig those out. I think I gave them to dd for wafting about with.....

MaryAnnSingleton · 21/07/2009 11:13

ds used to have a selection of silk scarves for when he was being a princess (he was about 5 or 6 !) but they were a bit manky. Actually,a soft ordinary hanky is good and can be washed each day..today I am wearing a hello kitty one !
Am seeing bcn on Thursday about tamoxifen..the more I think about it the more I feel I don;t want it..but am going to weigh it all up and see what she says. Feel very anxious about it anyway.
It must seem like a long haul from where you are now but it will pass and rads will whizz by and you can get on a bit more. How are you getting on with scarves ?(head ones I mean !)

Cakesandale · 21/07/2009 14:50

headscarves are OK actually, I have just received a fresh order, based on the ones I have found practical so far. I have a few bandanas, which other people seem to like, and are very cool for a hot day, but they seem to slide forwards a bit on me. I also have a couple of soft, lined cotton ready tied scarves that I like, and are a bit smarter, but DH has been quite rude about. But then again, what does he know, he wants me to wear baseball caps as he thinks they are cute. Cute they may be, but they do not quite cover the lower bald bits and are therefore not my first choice. Each to their own.

I have not even tried on the wig since I went bald (I am not entirely bald, just very thin - think Rab C Nesbitt and you won't be far off ) I just can't fancy it - was going to return it but Mum was adamant I might need it, and paid for it, bless her.

Someone recommended me to keep shampooing and conditioning my head, can't remember why, so I am doing that but i feel a bit of a twit.

Hope the sore skin eases off soon - what did the radiographers/nurses think about aloe vera, was it worth it, or not? Did you try it?

MaryAnnSingleton · 21/07/2009 15:00

do you know, I forgot to ask about aloe vera..will see if bcn thinks it a good idea. at Rab C Nesbitt !
Probably good idea to wash scalp anyway as you'd wash your face every day,or at least cleanse it and it's skin after all..plus probably nice and refreshing !

Cakesandale · 22/07/2009 09:04

Hi MaryAnn

Yes, the washing thing I can understand, just was a bit dubious about slathering conditioner all over it. However, I am doing it, just not able to remember the thinking behind it!

If you could ask about the aloe vera that would be great, I like to get different perspectives. I was told by my own nurses I could take multivitamins and evening primrose - the Cancer Research website says def. not to the EP, and probably not to the multivits! so am off both now just to be on the safe side.

Good luck at the appointment with the bc nurse. Hope it helps you to make your decision. Do let me know
x

MaryAnnSingleton · 22/07/2009 09:54

thanks cakes, am sure bcn will have advice on aloe and any other things that might help..on the breast cancer care forums (very good btw) someone had a dressing suggested which I might ask for as my skin under the breast is totally awful,broken and weeping -yuck yuck yuck -I have left it be,just washed gently and tucked nice clean hanky in to protect it..
thanks too for kind wishes for tomorrow - will report back. Am having to take ds with me (he'll obviously wait in waiting area plugged into iPod) which might make me feel less stressed,or not !