TAMOXIFEN -the third thread ***

[MaryAnnSingleton]

here we are- will put a link on the old thread.

Hi all, - well done for getting your second chemo out of the way Pennies, hope you don't feel too rotten this time.
Don't know if its any help - but my hair came away in dribs and drabs for a couple of days, then the whole lot came away at once (like a hat) and It felt very matted just before it happened, - but may well vary from person to person. - Hope you don't mind info.(tell me if you'd rather I shut up) - but I was clueless when I had my chemo, and had no idea what to expect.

Good luck with the gore-fascinated aunty MAS.

DD is home later, so I may push the hoover round the carpet and do some washing up!

God this hairloss is getting me down big time. Might go for the shave.

I've started wearing scarves etc even though the loss is not noticeable yet to others (I have VERY thick hair) so it wouldn't be much of a loss really.

KK, thanks for the info re hair - IO don't mind the info and wd rather be warned in advance like this.

Mine is starting to go but not in clumps - yet. Feels imminent!

Hope everyone is Ok today. I am having a lovely, quiet, introverted, no visitors sort of day! I can just do quiet things like sorting a few drawers and pulling my hair out if I feel like it Just strnds still at the mo.

I had a nice sunny walk with my brother yesterday but legs were really sooo tired the rest of the day.

Has the chemo effect been similar this time to your 1st Pennies?

Hope RWU is OK after the sad events of last week - these things leave me very sad, flat and tired and also rather irritable for quite a while. Hope your DH is coping.

Is Ebbie22 OK?

Looking forward to anyone finding that silk. My left breast has been rather painful for a few days whereas it wasn't in the preceeding week or two, which seems a bit unfair. But otherwise I'm ok. Have just read The Little Stranger by Sarah Waters and enjoyed it. Easy to read but good story.

I am definitely more tired this time SR. Going to drop some dry cleaning in then go for a walk and then after lunch I'll be ready to sleep for a couple of hours.

Hi all

If I remember right, it is the tiredness that is the most consistent thing, it gets a bit more extreme as time goes on. Just take as much rest as you can is the best advice. It is a pain, tho' (that and the hair thing)

But you are all ploughing through it well - al least it seems so from over here!

I think I'll try the silk thing, I'll head out to the shops later this week and see what i can find.

Had a nice relaxing weekend away - dh went to somewhere Eastern European, forgotten where and he's not back yet, so dd and I felt we should have some jollification too (we stayed nearer home tho')

Everyone seems quiet - are all OK? Perhaps it just that I'm spending too much time on here!

Think I'm a bit bored as its quiet after last week's rush of visitors but can't summon up the energy to do much. I plan to ring the GP re sick note, have a walk, then a friend is coming for a cuppa. She's just finished all her treatment so hair is regrowing which will be good to see.

I'll go and do a bit of dusting as have spotted quite a few cobwebs recently.

Ebbie - how are you doing?

Burning bright - hope you're feeling OK?

Pennies - have you shaved your head yet? I'm thinking will do this early next week as still have reasonable amount although uncomfortable. Might not last till next week in fact. Does it feel better once its gone? I think RWU said it did.

Hi SR - hope everyone is OK today - I'm trying (probably in vain) to cut down time spent on computer (not this thread, but generally.)

I've been feeling very tired this week, probably treatment catching up with me. I'm reading a book on fatigue and going to try pacing myself a bit better (I know what to do, just tend not to in practice. I knock myself out one day, then am exhausted the next)

IME - I felt better once the hair was gone. It the bit where its falling out and you have strands dangling thats annoying. Mine came out one evening all at once, - although I'd been losing bits up to then. And once the majority was gone I shaved the stragglers off. (I was looking like Arthur Scargill!) -Felt much tidier after that.

Is your next chemo this week SR? good luck if it is. Hope you are feeling a bit better today Pennies.
Love to everyone - one step at a time all the chemo ladies - you will get there.

Hi sandripples

All OK here, thanks! In my experience it was better once the hair is gone, I didn't enjoy finding bits of it everywhere, was scared to comb it, and the hair itself felt kind of dead and matted. It was a bit scary going out for the first time in the scarf but i just took a deep breath and went for it. You'll know when it's the right time for you. I thought my dd might want to help with the shaving, but she ran into the living room and it was quite hard to tempt her out! She is very excited about the regrowth though - she brushes it every morning for me so I look less like a bog brush. It doesn't take long to come back, really, mine is still VERY short (I finished chemo in late october), but it is very thick and people tell me it looks nice, including some people who would definitely say it was crap if that is what they thought!

Think I am going to go for a walk in a bit. My manic work thing is ending now and it is time I got off my fat a**e and did something!

KK - ditto on the tiredness, only I don't have any treatment to blame. Just knackered anyway! Am hoping a walk in the sunshine (if it lasts) may help.

And I have been stung by the sheer physical activity of some of the chemo ladies - they are doing more than I ever do! I did try to do more a few weeks ago but I overdid it and got knackered and so I am going to build up a bit more slowly and be less of a prat this time.

How's the swim thing going?

I felt completely shattered this weekend and I haven't had chemotherapy - weird..just felt not myself.
Have been working quite hard though.
Hope everyone is doing ok -am just briefly flitting by as have a lot on,but am thinking of you all.
Btw - mammogram appointment is on 8th April.

Good luck with that MAS, and glad to hear you have a lot to do!

I have been really suffering with tiredness, I think that the fatigue thing hangs around for a long time, and comes back to bite you on the bum when you do a bit too much. That's my experience anyway, and I don't think it is only true of people who have had chemo, I think the surgery, the rads, the tamoxifen all play a part.

By the way can I ask those of you on tamoxifen - how much does your GP give you when you get a prescription? My GP keeps just giving me 2 months worth, and it is getting seriously on my nerves. I always feel like I am running out, and it isn't as though they are reviewing the meds or anything Why can't I just a have six months worth, like I used to with the Pill? Is there a reason for this? I asked this time round for more than 2 months worth and I got - guess what - yes, 3 months worth!!! Do they get a fee from the NHS per prescription, or something???

Hi all

I have another question for you lovely ladies. Hope you don't mind...

My lovely friend had her operation to remove the lymph nodes yesterday. Last time she was in, I wasn't able to visit her (visitors were banned due to norovirus outbreak at the hospital), but made her a big batch of chocolate brownies to eat while she was there.

This time, I can visit her, but she's on a special diet now and is cutting out sugar, dairy and gluten, amongst other things. I don't want just to take grapes - does anyone have any ideas? I bought her some lovely handcream and lip balm before she went in for the mastectomy, but is there anything else any of you have found particularly nice while in hospital.

Thanks for all your help. I've been making notes of all the advice on scarves, silk etc for when her treatment moves on.

Hi Cakes - swim thing is going OK - but is part of the tiredness - to try to reach my target I'm forcing myself to swim that bit further- which is silly. But yesterday I made myself stop before I got tired and have felt better today. I have bursts of activity then feel exhausted - its frustrating. I think the fatigue does linger for a long time - certainly has in my case, -it ticks me right off (rant).

I only get one months worth of Tamoxifen - am constantly having to remember to re-order. Ridiculous- I must ask for more next time I see GP.
Can I ask about hot flushes? - mine had settled down, but the oncologist suggested I change from taking tablet in the am to bedtime - as I've been having a lot of nausea. Its helped nausea but the hot flushes have come back with a vengeance.[grrr] wondering if it will settle or if I'll have to change again.

Good luck with the mammogram MAS, I know its a little way ahead, but will be thinking of you

Just realised I am in a rather moany mood today - apologies. I need to boot myself out into the garden!

One month? That is Nuts!

As regards the timing of the tablet - I also had to change to nighttime because of nausea, and I must say there are nights when I am swimming in sweat (sorry, TMI) but then on others I am OK. What about lunchtime? I might try that - you should have enough food in your stomach to get rid of the nausea, but it would give you time to get the flushes out of the way. I'll give it a go and see if it works.

I also have wild bursts of activity and then am floored. have just been for a walk, it wasn't a long one, but I went fast. At the start I thought I was going to be sick - but got better towards the end. Now I have stopped I fancy a sleep! I am determined to get fitter though, I am having back problems and am convinced that, if I work on my core stability a bit (Ie tone up my flabby gut) it will help. Onwards and upwards!

TK - You do sound like a nice friend. I don't think she'll need much more than your company, but a nice drink is always welcome, water gets a bit samey, and also something nice to read? Something light and fun would be best as concentration might not be up to much. Those would both work for me.

Ooh, and wipes. If she has a canula in her hand it can be quite hard to wash hands well after loo, before food etc. Sorry to bring it down to the basics (DD says I am always talking toilets)but practical things work well as gifts!

Thanks Cakes - I think I might have to experiment, but will give the new time a chance to settle. yes a month is rubbish, I get one box (28tabs?).

TK - sorry I cross posted with you - not ignoring you you do sound a lovely friend. As Cakes said drinks are nice, maybe some dried fruit to nibble (is she allowed that?) light reading, maybe some cologne wipes for freshening up.
The hand cream you've got her will be much appreciated - I love that as a gift. When I was in hospital for a while DH brought me in my MP3 player loaded with audio cd's of various books and favourite albums which I really enjoyed.

Thanks KK and Cakes and MAS re tiredness and hair. I think we'll all feel better when it warms up as in addition to treatment we've all had such a long winter to get through!

I've been out for a walk today as friends rang and suggested we go together and it was nice. I always feel better after some fresh air.

tkband3 - I know grapes are a bit of a cliche but actually while I was in hosopital I craved fruit and grapes were deliecious! Also one friend brought me a book of short stories which was nice and easy for me to read. Yes drinks are goos too - I am enjoying eldeflower cordial with sparkling water at the moment.

Yes my next chemo is Friday. I feel I've got 3 bonus days this time as for various reasons I've 3 weeks and 3 days between 1st and 2nd chemos! I deserve it as will have to contend with the next op after 2nd treatement!

Hoping you all recover some energy v soon.

Good luck on Friday SR!

I think you are right now I come to think of it - fruit is great in hospital - you don't get as much fruit and veg as normal anyway, plus the enforced rest makes (sorry, toilet things again ) everything a bit static.

MY MAMMOGRAM WAS NORMAL!!!! YAY!!!!!

Just wanted to share

good luck too from me SR-will think of you.
And thanks for mammogram good wishes
tkband3 - you sound a really great friend -I think something nice to smell is always cheering,maybe a small bottle of scent -perhaps something not alcohol based though,in case it irritates skin. Definitely things to read.
Perhaps one of the little roll on essential oils things-they have them in Boots- to apply to pulse points. Or a cooling facial spray -Evian ?
Tamoxifen prescription - I seem to get 2 months supply (2 packs anyway) each time. I think I used to take it in the evenings and I think swapped it when I started having to take venlafaxine twice a day-but I can't remember when I did that -which is a bit scary as I've not been on them for that long ! I don't really get flushes, just occassionally a hot face,particularly after coffee/alcohol.
May I ask a delicate question about periods and other ladies things - when I saw my consultant he asked me about discharge (I loathe the word -it makes my teeth itch-I can barely bear to type it) but then he went on to something else so we didn't say anything - I just wondered how others find this (or don't) - if you can bear to divulge (scuttles off embarrassed)

Hi MAS

I can just about bear to talk about it if you can!

No periods since I started on the tamoxifen, but i do get a sort of watery and musty discharge from time to time - seems to last a few days and then stops, not sure if is related to my cycle or not. Does that help?

Still grinning here, by the way!

!! I've had very short,light periods at odd intervals and (oh dear) watery clear discharge most days in between (hooray for pant liners)