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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:
Cakesandale · 08/06/2009 09:27

Hi MaryAnn

I am doing fine, thanks - hope you are too.

Took my daughter swimming yesterday (Sunday) which gave me a bit of exercise too. I also got given a large bunch of flowers from a friend's church. And a lot of ginger flavoured foods to stop me throwing up on the chemo. Aren't people thoughtful? And often the people you least expect!

MaryAnnSingleton · 08/06/2009 10:58

people are kind ! When do you start chemotherapy ?

abermum · 08/06/2009 11:08

aww bless- when i had my first chemo session i was laying zonked on the sofa- dh had taken little uns out and the doorbells went- took me a good ten mins to realise and get there and when i opened the door it was a massive bunch of flowers

Cakesandale · 08/06/2009 12:39

Hiya

I start chemo on Wednesday morning. And today I have been to get my wig - looked MUCH better than my own hair at the hospital, but now I have tried to put it on to show dh, and can't get it on - so have slung the whole thing into a corner of my bedroom in disgust.

Childish, me?

Cakesandale · 08/06/2009 13:22

Hi again

Do you have a start date for the Tamoxifen and the radiotherapy yet, MaryAnn?

Abermum - I am not liking the sound of being zonked on the sofa. my dd is very, very full-on, and I have some experience of dealing with her with a hangover so I know that it is going to be a trial......

abermum · 08/06/2009 13:25

everyone responds differently remember! i found that the day after the chemo my head felt too heavy to lift off the pillow but then by day 4 i was able to do most stuff again. do you know what drugs you are having?

MaryAnnSingleton · 08/06/2009 13:30

got my letter about radiotherapy - it starts next Monday with the setting up appointment to mark the area to be zapped etc,then the following week,every day until 10th July...tamoxifen once I get my prescription (am seeing my GP tomorrow)...yikes ! Really good luck to you on Wednesday Cakes - will be thinking of you

Cakesandale · 08/06/2009 13:48

Thanks for the boost, Abermum! I am having FEC - appropriate name, as it allegedly makes you FECking sick. (Hence the ginger - i can live in hope).

Oh well, MaryAnn - it s best to get on with it and come out the other side. (Not that I feel that way myself, really). Thanks for the good wishes: and I'll be thinking of you when you get started. I am sure that the three weeks will soon go by.

I'll post a warts and all update when I have started!

MaryAnnSingleton · 08/06/2009 13:56

at FEC !

Cakesandale · 08/06/2009 14:06

Me too!

MaryAnnSingleton · 08/06/2009 14:15

does everyone feel sick/have hair loss do you think ? or is it a general warning that they give out ? I suppose as abermum says ,everyone responds differently.

Cakesandale · 08/06/2009 14:39

Well, as far as the hair loss goes, I have been told 90 per cent of it will go, so I think it would be best to shave the rest off. Not a good look for the school gate,really.

I suppose some people might be different, but in general, most people are a slaphead for the duration. (Sorry if I am offending anyone, just trying to be realistic for my own sake).

The sickness may be a bit more variable, I am told some people manage to go and have their chemo and then plod off to work. But I think they are few and far between. What Abermum said just now, about feeling better after 4 days, seems to chime in with what my consultant said - take it easy for the first 4 or 5 days, then you'll be able to do a bit more.

I lack imagination, so I imagine that I will be at work if at all possible, just for want of anything else to do.

abermum · 09/06/2009 21:02

good luck for tomorrow cakes! i am starting Taxol on Monday so hopefully you'll be up and about before me

MaryAnnSingleton · 09/06/2009 21:29

yes, good luck for tomorrow Cakes ! Am off to pick up my tamoxifen tomorrow...good luck too abermum

BecauseImWorthIt · 09/06/2009 21:38

MAS - I had no idea - no idea how I missed this. Sorry to hear about this, hope all goes well for you.

MaryAnnSingleton · 09/06/2009 22:40

hi BIWI -thank you - it's all been very quick,but is getting sorted and am fine. I have my prescription for tamoxifen now- my doctor had it all ready for me on his desk !

Cakesandale · 10/06/2009 10:28

Thanks both!

Am off to the hospital in a couple of hours. Gulp!

Sick bags here I come!

Get going on the Tamoxifen MaryAnn - and good luck, you'll be fine!

Abermum - I'll be thinking about you for Monday. Lots of positive vibes.

MaryAnnSingleton · 10/06/2009 13:47

are you back yet Cakes ?
I have my prescription - will start tomorrow morning I think.
Also been offered a nice illustration job..a fair bit of drawing which is needed by mid July - coinciding with radiotherapy - am very tempted to go for it as I really need the fee and the work will do me good but am afraid of committing to something that I may struggle with..yikes

MaryAnnSingleton · 10/06/2009 14:21

I've accepted the job ! will do me good to focus on something creative Hope today was bearable Cakes and that you are feeling fine.

Cakesandale · 11/06/2009 10:08

Hi MaryAnn

Good for you! You'll manage to fit it in, and it really will do you (and your bank balance) the world of good.

What sort of ilustration do you do, by the way? Am always madly jealous of anyone who can draw.

My treatment has been postponed until probably next Friday. Part relieved, part deflated, I really had screwed myself up to get on with it. But I felt a bit warm and a bit achey yesterday, and the hospital found my temperature a bit elevated, and my wound rather red. Am therefore on big, big antibiotics, but the consultant says that whatever happens, we must go ahead next week.

MaryAnnSingleton · 11/06/2009 10:39

oh Cakes, am sorry about possible infection and delay- I can understand how you'd feel a bit of relief then deflated.
I am delaying tamoxifen now - have spoken to breast care nurse who says to hold off until after radio. and she will meet me to talk about it...I am just having huge anxieties about it -sounds silly I know, but I have a history of OCD and anxiety which I am afraid of making worse/upsetting the balance. I hadn't discussed it before as I feel it is something I should put behind me (I was very ill with it) but realistically I do know it's always there to a greater or lesser degree. I feel huge relief that I've spoken to her anyway, as if I'm let off the hook for a bit.
I illustrate children's books mainly,though have done other stuff,magazine editorial,advertising etc -I occassionally do work in colour but mostly black and white line drawings. The new job is a joke book which is nice,it's just that there are 80 drawings to do...

Cakesandale · 11/06/2009 11:28

Hi MaryAnn

Ah, I can see why you were so worried about the tamoxifen now. I am glad you can shelve it for a bit, deal with one thing at a time.

Break it up into manageable chunks - always best with a bloody big issue. That way each chunk is likely to be fine, because your body and mind will have less to deal with, and because you will be thinking more positively, which I am sure is a big factor, if only we could reliably make ourselves do it!

I think it is hard to put these thing sbehind us, however much we want to. My dh has mild depression from time to time, which can be totally debilitating and take all the joy out of life. However much we hope it is behind us when he starts to feel better, it is part of his make-up, and we have to do what we can to guard against it, and prepare for any future outbreak - as do you. people aren't always very patient about issues with the mind, are they? But they are very bit as real and out of our control as anything physical.

That was long-winded, but i wanted you to know that i understand how carefully you must want to guard against a future reoccurrence. The nurses WILL be sympathetic, and will help.

Your work sounds hugely interesting, I'll bear it in mind if dh and I ever need any illustrations for our work (he is a magazine editor - corporate stuff - and I am a PR type). Also if he ever gets round to that book he keeps promising to write!

As for my delay - ah well, I have added ANOTHER two to the list of people who have interfered with my left boob. I may as well just walk stark bloody naked around that hospital, no-one would bat an eyelid.

TheMadHouse · 11/06/2009 13:40

Cakes - sorry about the poss infaction - what meds have they given you?

Mary - well done on the job, hope it helps to keep things in some sort of order.

I too suffer from and have suffered from depression. I call it my constant companion, but only sometimes do I walk in its shaddow.

It can be hard day to day, but the nurses are trained to understand and help you with your worries and issues.

The one thing I was thankful for is that mine is non hormone responsive and I do not have to take anything, although I did have my ovaries removed, so am and have been going through the menopause for the last year.

I am a decrepid 35 year old who has no norks and looks pregnant - a bit like a drag queen really!!!

Cakesandale · 11/06/2009 13:52

Hi MadHouse

I am on Flucloxacillin and Phenoxymethylpenicillin V - both penicillin derived drugs, and both making me feel a bit tired and sick but - heyho, it's something I need to get used to!

These drugs are a best guess prescription to get me started, but they are also testing some fluid they drew off, and will alter the meds if they find bacteria that need a more specific treatment. To be honest, though, i suspect the hospital buggered up the dosage from my first infection - I queried whether it was a five day course or a seven day one, and was told it was 5. And was given tablets for five days. Now I seem to have very similar meds for 7 days. Hmmm. Suggests to me that i just needed a couple of extra days first time round and we would not be here again. However, that's only only one small gripe - I am in awe at the professionalism and sheer kindness of everyone who has helped me.

The anxiety/depression thing is an absolute horror, and I am so sorry you are both having to grapple with it.

Lots of luck to you both with it all. Let's hope it can be kept at bay. A drink (or two, or three, but not 4) might help, but I suspect it is out of the question

MaryAnnSingleton · 11/06/2009 14:09

thanks for your thoughtful words Cakes and TheMadHouse- am sorry too that you have depression TMH - it is horrible.
I would say that my chief thing is anxiety which does come and go -the OCD is more background but asserts itself from time to time - nowhere near as severe as I have experienced it -as I say, I feel I have achieved a very careful balance and try to hang on to it which is why I am worrying about tamoxifen. Of course I may be lucky and not have any side effects and sail through it but the trouble is I don't know that !
Am sure you don't look like a drag queen TMH !
Really hope infection clears up Cakesandale - look after yourself.

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