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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:
reallywoundup · 25/10/2009 16:44

well no other posts and pops up miraculously touting a book (which IMO!! has a dubious nature- all healthy twaddle and not needing to take medications ) on two separate totally unrelated threads- either author or publiciser! bet if you google search the title it will come back with loads of chat room hits from the last few weeks!

BUT maybe i'm a natural cynic

MaryAnnSingleton · 25/10/2009 17:00

!

teatotal · 25/10/2009 21:18

Hi
I just wish I had done more research years ago perhaps my 'bestest ever friend' would not have died of breast cancer. From a tiny pimple to dead! Sorry if earlier info was not to your liking.
God bless anyway!

MorphFan · 25/10/2009 21:45

Hello - Popped by to catch up, but I see we seem to have a fuckwit in our midst. I'm sure I'm just being extra-sensitive, but that's not really what I needed to read after a frankly shitty week.

Am back to clinic on Tuesday for the results of my surgery. Obviously am hoping no nodes are involved and that I'll be seeing the Oncologists for chemo referral.

Love to all - still haven't caught up with thread since I went in for surgery but hope you are doing well.

Morph x

MaryAnnSingleton · 25/10/2009 21:49

hi Morph - will be thinking of you on Tuesday and hoping for a good result xxx so sorry it's been a crappy week..we're here for you xxx

reallywoundup · 25/10/2009 22:35

Morph- good to see you, i know all about crap weeks- i have enough of them! You are bound to be feeling out of sorts atm- its a big thing you've just been through and you need to take it one day at a time!

research is one thing that thankfully oncologists do day in day out with medical degrees and equipment avaliable- frankly weird 'alternative' therapies are all very well if used in conjunction with other remedies but telling a group of cancer patients that they need to buy a book which probably has a few recipes for lemongrass and wallaby shite soup- and indicating that this will miraculously make some difference is a bit off- you have popped up from nowhere with no other posts, maybe if you had more provenance we might take some notice until then you can keep the book ta! I am sorry to hear that you lost a friend but no doubt her medical team did everything in their power to help.

reallywoundup · 25/10/2009 22:41

have hopefully dealt with the fuckwit Morph and alerted HQ! Trip Trap back to the bridge

MaryAnnSingleton · 26/10/2009 07:45

Am also very sorry about teatotal's best friend. My best friend has a close pal in the US who eschewed medical advice regarding her treatment and chose to take a more natural route and is suffering pretty badly (she has bc)
this might cheer you guys homeopathic A&E

Cakesandale · 26/10/2009 09:24

See it has all kicked off while I was away- dear me - cannot now see the original message ref the book - but sounds like it was the LAST thing we needed, esp MorphFan at this point. Hope teatotal has gone now and MorphFan has not been scared off. Some people are just crass and insensitive aren't they?

if she was just a promoter it makes me really, really mad - I get asked to do odd stuff from time to time - but the answer is always "NO" if I think it has the potential to upset or worry anyone. Not that I promote books and stuff, but I occasionally get asked to do things that are frankly either a. risky to people's state of mind or b. just plain lying - not for me, thanks.

Hoping for good results and a better week for you Morph! Remember it's early days....

ROFL about the 'lemongrass and wallabyshite soup' comment RWU!

As regards tamoxifen - have checked on the box MAS - it just has a brand name APS and Tamoxifen 20mg on the label. Your approach sounds about right - expect nowt and ignore EVERYTHING. I start taking it today - would have interfered with my partying any sooner But now I am ready to get on with it.

Here's to the start of a shiny new week: hope it is a good one for all!

xx

Cakesandale · 26/10/2009 10:09

Just checked out the Mitchell & Webb link MAS PMSL!!!

MaryAnnSingleton · 26/10/2009 10:27

Just checking in briefly - My brand is Wockhardt - am sure it probably really makes little difference -on the forums people get pretty het up about brands -it makes me nervous about having something different next time - I may ask the pharmacist first which they have in stock.
The people on the forums also seem to expect to get side effects-as if it's a given,which winds me up now I've bitten the bullet and started on tamoxifen- it's the kind of thing that frightened me before starting- I just feel I need to say don't expect bad things to happen because it just might be ok !! Am touching wood that I continue to be ok (and that you find it fine too Cakes) I wonder sometimes if my threshold for pain/discomfort etc is quite high-that I'm insensitive !!
Lots of love to Morph especialy this week and to you two of course

Cakesandale · 26/10/2009 10:42

Hiya MAS

I think you are absolutely right not to let brands and other people's worries about side effects get to you. There are many, many extremely brave people out there: and there are also quite a few who like to wallow and feed off worry a bit. I don't blame them, worrying about small things probsbly helps them not worry about bigger ones - but it's important not to let it infect your thinking.

Maybe you do have a high pain threshold: oif so - good for you! Long may it continue!

Have a good week y'all! It's half term so may be a bit tiring here - but a change is as good as a rest!

MaryAnnSingleton · 26/10/2009 11:35

yes, I can see the worrying about small things can be a way of not thinking about the bigger,more scary things -that seems to ring true with my ocd - I spent an inordinate amount of time worrying about ridiculous things which I guess prevent me from really focussing on something bigger and infinitely more scary ! I have a letter today asking me to make an appointment with mental health team to be assessed - yikes..

reallywoundup · 26/10/2009 14:02

i see i dealt with our little problem!

Half-term- MANIC!! will catch up later!

teatotal · 26/10/2009 19:47

Firstly, I would like to apologise as I seem to have upset you. This was never my
intention, I only know love and kindness, helping others and feel foul language is unnecessary.
I WAS an active fund raiser and raised over £130K for breast cancer. My 'bestest ever friend'I mentioned earlier did all the right things Mammogram, Lymph Nodes removed - these are the dustbins for the body,(so where did her rubbish go), Chemo, Tamoxifen and so on, that was ten years ago!. I searched The Truth about ...... and saw a different picture, one that made sense and wanted to share it with you, that's all.

MaryAnnSingleton · 26/10/2009 20:48

Cakes - was it you who saw Up with your dd ? I was trying to scroll down to see - anyway, we saw it this afternoon,dh,ds and me and it was lovely, charming,clever,funny and sad - I was a bit teary but it was dark so no one saw !! lovely,lovely film.The boys loved it too.
Wagamama afterwards -ds chose a very hot spicy noodle thing which I had to swap for my Wagamama ramen - was v nice but very hot indeed

reallywoundup · 26/10/2009 23:42

right i've had a crap day and i'm in a foul mood and i must not feed the troll

MAS- dt's 1&2 went to see up for a birthday party and loved it- i have planned to take dt's 3&4 on Thursday as dh can babysit for dd Unfortunatly we don't have wagamama (in fact we live so far in the middle of nowhere that the most exotic we have is the national milk bar

i have just woken up and realised i fell asleep mid-post! How sad am i back to bed i think, night all!

Cakesandale · 27/10/2009 10:47

Hi all

Yes it was me who went to see UP - so glad you liked it!! We were all teary as well, DH and I think it is really exceptionally good, I usually have a soft spot for these Disney type things, but the way it was paced and the old couple's relationship.. ooh it is all so lovely. I will be buying the DVD...

Bet the letter form the mental health folk was a bit of a stiffener - but it's something you want sorted, so take a deep breath and go, girl. Dh has had one recently because he went to the doctors with stress and depression a while ago: he did not take it well. It is just a bit of a stigma I think that lots of people feel about the term 'mental health', but it's all health at the end of the day, and I bet they will be able to really help.

Half term here too!! aaargh!!! and yesterday I compounded the agony by going shoe shopping (Gulp)

RWU - you need to get more sleep!!

Cakesandale · 29/10/2009 10:45

Yay! Just bought tickets for the Jools Holland Christmas tour, in Birmingham! Let the festivities commence! (hope I will have stopped feeling sick in the tamoxifen)

Hope you are all OK ladies! How is the radio going RWU?

xxx

KurriKurri · 29/10/2009 13:16

Hi all, hope everyone is doing well at the moment. So pleased you got your start date for RT and your tamoxifen sorted out Cakes, in my experience the effects of the tamoxifen calm down after a while as your body gets used to it. Also on a positive note, if it makes you feel a bit grotty - hot flushes etc.- at least you know its working.

MAS - my brand of tamox. is wockhardt as well - I didn't know anything about different brands ( at ignorance). I think you are right not to anticipate side effects, but deal with them if and when they come. I find it helps to keep a little note of how I feel each day if I start on a new drug, then you can monitor yourself how you are doing and whether any effects get better/change or whatever.

I'm trying to get my head together after a rather emotional week. My DSIL had a mastectomy yesterday, we found out on monday. I feel so sad and upset, she is like a little sister to me, and also sad for DH, he's had to cope with me being ill and now his wee sister. Honestly I know I'm being stupid and probably self indulgent or something but I keep crying all the time. I went out and did a load of digging in the garden this morning to try and sort my head out. She's phoning me tonight from hospital, and the last thing I want to do is get upset when I speak to her. I'm going to pop out tomorrow an get some things to make her up a little parcel of treats, for when she comes home.

Hope I didn't upset anyone by sharing my news, I think I needed to sort out my feelings a bit.

Thinking of you Morphfan, and RWU, crap weeks have a habit of turning up every so often don't they? Hope things are more settled soon.

Cakesandale · 29/10/2009 13:40

Hi KurriKurri

Thanks for that - I think I just need a bit of time to adjust, also to take it at night as they suggested (for completely ridiculous personal reasons I took it in the morning - won't be doing that again!!)

So, so about your poor SIL, it must be very hard watching someone close go through it when you have only just done so yourself. And not really any time for you or her to get your heads around it either....

Fair do's to get upset now, am sure you will be OK when you speak to her. And even if you aren't she won't mind, will probably welcome a group sob.

Great idea about the pack of treats, you do sound like a fab SIL. My vote would be for anything pampering that also smells nice (and I know MAS would agree there, she is a sucker for smellies). And also for something that might give her a laugh, bet she could do with one!!

It really does seem to be an epidemic doesn't it? God, I hope they manage to sort out why, and get to grips with it soon.

Glad you came on here to vent - that's what it's for, after all! Love to you and SIL

xx

KurriKurri · 29/10/2009 14:50

Thanks Cakes - think I just needed to vent. I'll find her some nice smellies, also a good book or DVD for while she's recuperating. She likes period dramas, so will look for something in that line. Unfortunately we live a long way away, so can't give her a cuddle. But she's got a lovely DH, and her PIL's live near and seem v. nice, so am sure she will get loads of TLC and support. Just want her to know I'm here for her.

Cakesandale · 29/10/2009 15:28

Am sure she knows that. And that will count for a lot. Vent away - and let us know how she is (I am quite nosy)

KurriKurri · 29/10/2009 15:51

will keep you updated (lol at nosy )

reallywoundup · 29/10/2009 21:27

'ello ladies- i am not ignoring but i can't cope with all the changes to mn it hurts my eyes and head and makes me want to cry so i am not returning until things are back to the good old days normal

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