**TAMOXIFEN** 4th thread

[MaryAnnSingleton]

here we go !

Did / does anyone suffer from early morning waking whilst on chemo? I'm up with the birds every morning and I'm pretty fed up with it now! Tell me it gets better after chemo.

mousse made - had a job getting it neatly into 6 glasses (handily saved my old Nutella glasses !) -very messy but dh wiped the edges (no he didn't lick them)
I've just noticed the link things to fb and twitter !!! what's that all about ?

Hope you don't get stressed Cakes - actually I'm sure you'll manage it all very well. Are you dealing with Mrs Duffy??!!

Pennies, I don't wake too early now, although I did for weeks after diagnosis. I tend to wake and get up about 730. Fortunately I sleep like a log - better than pre Dx! I guess its because I've pretty much given up caffeine, as objectively I do little that could tire me out normally. Its yet another thing that I suspect is individual. Sorry about your early waking though as it must be a pain. Have you got drak curtains? I made black-out lined ones last year as I was waking up with the birds last summer! They helped me.

MAS - sorry I don't know about FB and Twitter as I don't use them except when agreed with my DD as a way she can let me know she's safe when travelling.

I posted a message here that seems to have got lost!

Pennies - not sure about sleeping: I now do not sleep well. but am not sure if this is treatment related, probably not, so don't lose heart!

The FB and Twitter thing seems to be causing a bit of consternation as it seems to link everything together so that anonymity is compromised a bit. There has been some namechanging, I think.....

Thanks for the vote of confidence SR - have just realised who Mrs Duffy is! (Doh, slow on the uptake, me???) No mine is not such an exciting story.

Good luck with the work cakes - hope you don't get too stressed.

I glad the mousse was successful MAS - I'm impressed, - I don't think I've ever made mousse.

Thanks for the info. about chemo and thyroid Pennies - that is very interesting, - DH said as soon as I told him about the thyroid problem 'I wonder if thats anything to do with your chemo' I'm going to try and read up about it. But I would recommend anyone who doesn't feel as if their chemo tiredness is improving much after they've finished to ask for a check.

With regard to the early waking - I found I did too - I think the steroids may play a part in it, - I was told not to take mine after about 4p.m. to lessen the disruptive effects. (I still woke though). I'm not a good sleeper now, but I have been weaning myself of sleeping tablets for the last couple of weeks(I thought that might be what was making me tired the next day) and I've actually slept a bit better since I stopped. Any way I hope yours settles down soon ( I used to listen to audio books on my MP3 player when I woke - then at least I was resting even if not sleeping.)

DD and I went shopping yesterday and she got shoes for her trip abroad. And we had a nice coffee out. Its good to see her, don't think I'll see her again until after she comes back from her inter railing.

Love to all, hope weekend is going well

Re steroids, my hospital recommends not taking them after lunch-time.

Thanks for the tip about thyroid issues.

Its quite chilly here but I've managed a good walk today.

I think anonymity is so important on threads etc as otherwise your posts can be traced for years afterwards and named. This happened to a friend of mine recently - nothing serious but she was shcoked to find a post she'd made years ago when she googled her own name recently. However I don't use FB or Twitter so don't think there's any link to my RL name from here.

MAS - mousse sounds lovely and now I have an excuse to buy/eat lots of Nutella!

Pennies - I have had an awful problem with waking early - usually about 4am and then I can't get back to sleep. Went and bought some herbal thing from the chemists today to see if that helps. The early waking started after I was diagnosed and hasn't really gone away. It's a real pain.

My big news for today is that I have a new kitten - pressie from DH for completing treatment (well almost). I already have 2 bengals and this new one is a little silver bengal boy with black spots. He is adorable but I had forgotten how lively kittens can be! Minor state of warfare in my house just now as a new pecking order is established. Looks like the young one is coming out on top. He is a feisty wee so and so with a purr like an engine. Off to settle him for the night

I would hate for this thread to get bandied around all over the place -and similar threads -this feels like a safe place to say very sensitive things (I know it's an open forum but the people on here re trusted)
Mousses went down very well,despite cousin saying she'd never eat it all !!
Haggis -am envious of new kitten- Bengals are so lovely !

the alarming thing about the many nutella jars is that I'm the only one in the house who eats the stuff

Good morning.

A friend of mine who was Dx in November about a month before me, and has had a lumpectomy and radio only is having terrible problems with weight gain, flushes and exhaustion. She's been on Tamoxifen for 5 months.

Her Dr has said she's unlucky with the degree of exhaustion from radio and that things might improve re Tamoxifen when she's recovered from radio.

She's researching the aromatase inhibitors but is interested in 'whacky' approaches too. Have any of you looked into alternative approaches at all? I've read the BCC thread about not using conventional medical approaches - she's not as extreme as that as she has gone with the medical route so far but I think she's keen to know of anything which might help at the stage she's at now - as an alternative to Tamox. or the other drugs. Any contributions welcome!

Haggis - the kitten sounds lovely

MAS - i'm with you in wanting to keep the thread quiet and private ( Iknow we have lurkers and they are welcome, especially if they have BC or know someone with BC) but I dont want links from it popping up all over.

SR - I have not researched it at all as I would be very nervous about using althernatives in place of conventional drugs, even though I am very open to them for coughs and colds and things. But I am part of a focus group on herbal remedies and one of the ladies on that has declined tamoxifen and makes herself violet leaf tea instead. She absolutely swears by it. If I remember right she buys the leaves from a source she trusts in Scotland, but I know no more than that. I am afraid it sounds like a very dangerous route to me, but that's the only info I can offer.

KK - hope you see your dd again soon.....

Tamox is really the only thing for pre-menopausal women - aromatase inhibitors not suitable I believe. I think it's pretty much the luck of the draw whether you get side effects it seems. Does your friend feel so exhausted post rads that her levels of activity are much less ? or does she feel hungrier and eat more,perhaps unconsciously ?
It's tricky.

It is indeed tricky. I am finding the tamoxifen is making me pile on weight as well: I am about to start the GI diet and also give myself a stiff talking to on th eating front. See if that works.

Haggis - I didn't know what a Bengal cat was - so looked them up - they are beautiful, what a lovely present from your DH. Do they grow bigger than the average cat?

SR - I'm afraid I don't know anything about alternatives, I've just gone down the medical route, I wouldn't feel safe doing otherwise. I have heard of the violet leaf tea, that Cakes mentions. And there is something else someone once told me about, but I am racking my brains to remember what it was at the moment. (will let you know if I do!) Very best wishes to your friend, I hope she starts feeling a bit less exhausted soon, has she been given any advice on how to manage extreme fatigue?

I don't really know much about facebook and the like - does it mean someone could link to our thread and it goes all over the internet? Like others I feel safe on here, (with of course any one who feels they could find support here being welcome).

DD has decided to get a train very early tomorrow morning, so I've got her for another day

Hope everyone has managed a nice relaxing weekend.
We had hailstones here this morning

I've just remember the alternative thing - its red clover. I have met a couple of people who take it. But I am not in any way recommending it - I know nothing about it, I think there's various stuff on the internet about it (I'd definitely consult with oncologist before she takes anything though)

Thanks for your contributions which I'll pass on. My friend has had extreme exhaustion since rads - her Dr says this happens to about 10% of women - she has gone back to work about 3 days a week but then has to spend a couple of days resting, sometimes just dissolves and feels she can't cope etc. She is normally a very energetic person so finds this hard to deal with. Its a good idea to see if she's had advice on the fatigue.

I would find it horrendous if I gain weight on Tamoxifen as I am already overweight.

My friend is post-menopausal BTW.

Anyway I have had a lovely day. Weather was perfect and DH and I went to Bodnant Gardens near Conway - it was looking fabulous - we hadn't been there for several years and never without children. I thoroughly enjoyed it and just being somewhere different after so many months being very very local!

The gardens are NT - fantastic rhododenrons, azaleas, cameilas, huge magnolia and big cedars, redwoods etc all in a dramatic valley and in front of a lovely house. Well worth a visit if you're in the area.

Cherry and almond tart was vg too, and the shortbread But I did walk all round!

I hope the kitten is settling in - lucky you, Haggis!

Haggis, how cute. I'd love another kitten. Ours is just over a year old now, but he's still daffy. Not sure how he'd cope with a new addition though.

Pennies, glad to see you back and to hear you have a bit more energy. Am new to this still, but have been reading up a bit on chemo. A few people mention the steroids as a cause for early waking, so could that be it? Maybe they could decrease your dose if so?

SR, I wouldn't go down the alternative route either. All I've heard has made me glad that I'm a candidate for Tamoxifen, if only because it's another bit of ammunition against recurrence. Though having said that, if when I start I have the dire side effects your friend's having who knows. I can't imagine taking the non-medical route though. Far too scary consequences. Does Tamoxifen really cause weight gain? Yet another things to look forward too then.

• SR how's your nerve pain post clearance? Down to my elbow on the underside is so tender it makes it hard to rest at night. Not horrendous in the great scheme of things and red wine most definitely helps, but was wondering if it's true it usually goes by six weeks post op??

• Kurri, hailstones here too - enormous ones. Me and DS ran out shrieking, competing as to who could bring in the biggest one. Am sure I won, though he's having none of it. Lovely day now though.

SR - could your friend's exhaustion be mental exhaustion possibly ?
I don't think that weight gain is a given - it can happen but doesn't necessarily. I don't think I have put on weight,or if I have,it'd not be much as my clothes seem to fit the same and I seem the same shape and size (I never ever weigh myself as I would get obssessive about it ) I was doubly concerned about taking antidepressant and tamox. for that reason too. My self image is pretty flimsy and weight gain would make me feel even more self critical - wrong I know,possibly vain and foolish.

am unveiling my election namechange !

Showing your colours MAS!! Dare I say it but my dad and I are going to resurrect an old election tradition (now that I am off work and he is now retired) of sitting up all night on Thursday with a bottle of gin and a pile of nibbles so that we can watch the results come in...

SR - sorry to hear about your friend. I am struggling a bit on Tamoxifen too. Weight gain, awful hot flushes and tiredness - but I have still some rads to do so it will maybe get better. I am hoping that the SE will decrease with time.

Kitten update: Aaaaagh - what have I done!!! I have spent all day tidying up after the wee blighter. He has shredded a box of tissues and a toilet roll, climbed the curtains, tried to jump one of the older cats who was in the litter tray at the time (big explosion of litter and fur), has attacked my fleece and taken chunks out of the duvet cover. All of this interspersed with quick snoozes, lots of eating and cr...ing. The low point came when I had to wipe his bum and wash his paws (he hasn't quite mastered the art of burying poo yet). Bengals are known for being feisty (and no they are not really any bigger than other cats KK) but this one acts like he is on speed or something. He is incredibly loving though and purrs all the tome - even when he is eating. Wish I knew how to post photos - I'm sure its possible but I am a techno numpty.
Got to go and see to his royal highness now - can hear him squeaking for attention.

Tee hee! new baby animals are always a bit of a double edged sword til they settle in, aren't they?

Smee - the tenderness under the arm does settle gradually (personally it took a bit longer than six weeks though).

Indeed, the tamoxifen has caused me to gain weight too. Just one more joy to put down to treatment. Have started the GI diet to try to wrest control back. Someone has told me this morning that I have lost weight, but sadly i am sure it is just a flattering dress I am wearing. It's too early days to have lost anything yet (plus i saw it all in the mirror this morning and it is defintely all Still There). Sigh.

Morning.

Bengal sounds fab - if a little bit like hard work! Is he going to sit on your head as well??!!

I'm on day 5 of Taxol now and apart from being sick yesterday and feeling quite low, plus intermittent diarrhoea it's OK. I just did a Davina workout which is the most active I've been since starting chemo. I found it hard but I did it.

I decided to take action because of what you're all saying about Tamoxifen making you gain weight. Does it have a dramatic effect in this respect or is it something that you can manage? I'm only 5'3" so it doesn't take much for it to show that I've put weight on and the one thing about this whole disease & treatment is how it ravages your body and I want to work hard at trying to counteract the effects of it all.

On a similar but more personal note I'd like to broach the subject of sex . I'm totally struggling with the whole issue of ever feeling attractive enough to have sex again. I'm bald, breastless and going through the menopause. Obviously any kind of intimacy seems off the radar right now for me, but I'm wondering (if you don't mind me asking) if anyone else managed to maintain any kind of sex life during chemo / treatment? DH is being fab about it but I want to know if it will ever be back to what it was (which wasn't nightly swinging from chandeliers type of stuff, altogether far more modest and irregular, but better than nothing!). How did / do you manage this side of your life? Hope you don't mind me asking.

Pennies, great you're up to a work out. I'm impressed. Long may it continue. Get you in training for the Tamoxifen weight gain. Such joys we all have ahead.. Someone told me you can get the GP to refer you for free Gym membership. Is that really true..?

Haggis, my dimwit cat somehow managed to bring in a baby bird this morning at 4am. Think mad fluttering on the duvet. I rescued him, but doubt he made it, which is sad. Does your newbie run up your body and land on your head? That always used to make me laugh, though am glad he stopped as he's huge now.

Just had my drain out, so hooray. Even bigger hooray as lovely consultant phoned through to get my results for nodal involvement. I already knew it was in one node, and suspected two as another was enlarged. Result is that it is just in two. Proper results on Friday, but how humane of him to go the extra mile and make the phone call. Have been so impressed with the level of care through all this. I know I've a long way to go, but still feel much more positive.

Hello everyone - the kitten sounds great fun Haggis, even though he's keeping you busy.

Pennies - frankly I wasn't up to anything major sexually while I was on chemo. I felt so battered physically, and quite honestly all I wanted to do when I went to bed was sleep. DH was very understanding about it. We had loads of cuddles and woke up each morning in each others arms - and in a way things were more tender and intimate, despite the lack of actual sex.

With regards to how I felt emotionally - I wore a nighty in bed, wasn't happy about being totally uncovered, and honestly I still cover my chest now, - I think I just don't want to be reminded of what's happened to me, and want some part of my life to feel normal.

Anyway, things got back to normal after chemo finished. It definitely affects libido so don't panic about that. I did talk about problems with my GP, and he was helpful (Obviously not for everyone, there are some GPs I wouldn't feel comfortable talking about it with)but I do think its very important as part of one's general wellbeing.

I think there's a macmillan booklet about how cancer affects sexual relationships, I'll see if I can find it.

Hope thats of some use (we've all been there, so I don't really worry about TMI )

booklet here