Tamoxifen - advice please !

[MargaretMountford]

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 !

'Infusion' sounds nice and cosy, doesn't it? Like a cup of herbal tea.

Overnighter sounds a good idea, especially if it gives you a chance to rest through the crappiest bit. I was not too bad last time, most of what I experienced was mostly worry, waitng for something crappy to happen. Not sure what to expect on round 2. But at least each zapping is one more out of the way.

This has nothing to do with anything, but I thought I'd share as it was hilarious. Took dd to a huge Borders bookshop yesterday. She is proud of her reading ability and so very given to picking up books meant for adults and spouting loudly the contents. I was up for a bit of light reading yesterday and so was in the humour section. She selected a book called 'Animals with Tourettes'. The first page she opened it had a meerkat shouting 'Cock Gobbler!' As they teach them to read with expression at school, and it was printed alrge with exclamation marks, the whole shop must have heard.

oh MaryAnn, I didn't know about this - you have kept it quiet! I had wondered where you were though. (tis me, F A)

So sorry to hear your news, but very glad you are recovering

I found this thread searching about CT scans. My dearest friend has just been diagnosed with cancer. Suddenly it is very near to home and I want to say how brave you all sound.

I've no idea how to help her so might lurk for advice, if I may.

Lots of love x

oh God - someone gave us Pets with Tourettes !!
Hello Jumente, do lurk here ! I'm fine - am so sorry to hear about your friend - it must be scary for you
Hope the overnighter goes well and allows you to sleep the nastiness away abermum and good luck again too Cakes.
Am dashing in to post as dh working from home next 2 days so never get a chance on here..also desperately trying to work ! Made myself walk into town this afternoon after ds's dental appointment (hooray,lovely teeth !) - he walked home but I am obsessed with buying fruit so walked to M&S and back,via Costa to buy a frappaccino to cool me. Was feeling really tired but it perked me up. Don't think the tiredness is neccessarily a radio. side effect..think it's just work/heat/daily grind. Am glad I did walk as it's perked me up..so off to draw for a bit. xxxxx

Hello Jumente

Lurk away as much as you want. But you won't learn a lot from me, I am determined not to become a cancer expert - too horrible to acknowledge it any more than you have to!

I am truly sorry to hear about your friend, but the thing to try and remember is that there are many, many positive outcomes. And if you break it down and just deal with one bit at a time it is usually manageable. Plus, the support from doctors, nurses and fellow travellers is really fabulous. I wish her all the best. If she wants to talk to any of us direct, put her on here - I will happily provide an email address for her or anyone if it helps. But as I say, I am mainly in denial so not an authoritative source of info, only of ill-informed opinions.

MaryAnn, the heat is an added strain, isn't it? I should think the radio is at least a part of your tiredness: I remember a friend of my Mum's having radio, and she fell asleep in the car on the way home every day. her husband just got out and left her in the car on the drive to get over it. She was a LOT older than you, of course, but it is a recognised side effect. You are nearly a third of the way through now, so just hold on. And keep treating yourself to nice drinks!

Thankyou both so much. Cakesandale, yes, my method of 'coping' (not that I have a lot to actually cope with iyswim) is to google till I have square eyes, which I've been doing lately - but I don't think that really helps my friend. I really appreciate your perspective and will definitely try and bear this in mind when I speak to her next.

It is so hot at the moment and I hope you are not suffering too much due to the heat.

Hi Jumente

I am doing fine in the heat, thanks -I work for myself and am sitting happily with all my doors and windows open. So I am very lucky.

Your friend is lucky to have you watching her back. If I can offer any support to either of you I am happy to do so. To be honest, a bit of a laugh is every bit as useful as practical advice. Even if her case is mild and straightforward, the treatment and recovery process is long and sometimes a bit daunting, so light relief is always welcome. it is definitely not all doom and gloom - I saw my consultant yesterday pm just for a brief review of my meds and a (purely clinical) feel-up of my boobs, and we all had a good laugh in the waiting room.

Oh that is so kind of you.

I don't think she will feel ready for talking about it yet and I hate the way I want to, because that's not fair - it's not about me.

I'll just try and listen to her if and when she's ready. I hope as you say that there are some aspects of life that remain 'normal'. I like the purely clinical bit there

Just trying to prepare myself for whatever she wants me to do - I have often been a crap friend, don't want to let her down this time.

Thanks again.

No worries Juvente

I have also found it hard to talk about in real life, mostly because I wanted everything to go on as normal. Now I am having chemo and my hair is due to start falling out any day now, I have had to relax that a bit, as people are going to notice

She will talk when she is ready, and just being her friend is enough. You don't sound crap to me, even if you have felt so.

However she responds to the news and the treatment she won't want to be defined by the disease. So a chat about whatever, a trip to the pub or the cinema or the park, or a cup of tea and a biscuit - whatever you usually do together - is perfect.

you sound like a fab friend Jumente - am sure you'll do the best for your friend I think a laugh is a great bit of advice and just being there even cyberly - I've had so many nice emails from my friends, just saying how are you , thinking of you etc and often with amusing snippets of things that they know I'll like...
Long trip there and back today but fine...the drivers are so nice and the other passenger was a very nice old man who was on his last radio. today - I 'd been with him last Friday. I nearly fell asleep in the car ! Am off to ds's summer concert this evening which should be v nice - he is singing with his choir. Is it tomorrow for chemo Cakes ? I ate a huge bit of ginger yesterday in my strir fry and thought of you

Hi MaryAnn

No, not chemo til next Wednesday, but i have big (and sad ) news today. My hair has started to fall out. Aaaargh!!! I knew it was coming but it is not nice.

Dh being really, really supportive, we are going to shave it all off, probably tomorrow evening (Dh out all day tomorrow and most of today). I am keen not to look like an old bloke doing a comb-over so I think we need to go for it. I am OK, but it is a bit of a straightener, that's for sure. I blame going swimming yesterday, I think it was the last straw for my poor old scratchy scalp. And I bet I have a horrible-shaped head under all this. At least dh is a slaphead too.

Luckily our dd has enough hair for all three of us.

aww Cakes - but it'll grow again - keep positive and am thinking of you xxx

Thanks, Mary Ann. In some ways it is a relief as i have been waiting for it to start. But in others it is horrible. Just the idea of being bald - plus the fact that it all just looks lank and dead. It really does need to get shaved off once and for all, doesn't it?

I'd post a picture but don't want to frighten the horses

be bold and shave it off, I think that offers you a degree of control over the process, in a way,iyswim..that's what SIL did.
Were you offered chemotherapy because of the few odd cells near original lump ie. because they weren't sure whether they'd got it all ? Sorry to pry again, only it seems that so many people have all kinds of different combinations of treatments for very slight variations in diagnosis. I know you didn't see your pathology report but do you know what grade you had or anything (but if you'd rather not delve then I do understand). I suppose radiotherapy differs from case to case - I've no idea how much I'm getting in a dose,only that there are 15 sessions which is what I was told it might be - between 3 and 5 weeks. The lady I travelled to hospital with today is having 26 for example.

Yes, shave it off is what I shall do -you are absolutely right, taking back control is important. I think we'll do it tomorrow when dh is back.

No problem with questions at all. My lump was stage 2, and the chemo is indeed because of the few cells near the original lump. Apparently there was quite a row about it, with the surgeons believing it was all sorted, and the oncology guys wanting a more cautious approach, and they have won. They did give me a very open choice about what to do - but who could really say 'No, thanks'? They felt that I had a pretty low risk of the disease transferring elsewhere, but that chemo would give a further boost to my chances of successful cure, as I am relatively young to have the disease (I am 46, I guess you are even younger, probably).

The nurse calls it a 'belt and braces' approach, but one they would not take for an older woman in the same circumstances as me.

I think everyone's prescription differs for odd reasons. The radio that was mentioned to me at the start was the same as yours - 15 sessions over three weeks. Not sure if that will change now or not. But I understand that things such as having big boobs can make all the difference - the bigger the boobs, the more zapping they may require.

I don't fancy 26 sessions: the skin must be as raw as anything, poor her

oh Cakes - I am older than you, by a few years !
Does stage 2 mean that it's invasive but not spread beyond breast or into lymph nodes ? I know that mine in Grade 2 in the grading system, but is that the same ?
I hadn't considered the size of breasts to be pertinent to length of zapping but I suppose that would make sense. The lady today has larger breasts anyway ! Think mine are medium ! You are wise btw to go for what the onc. recommends,after all they do know what they're talking about - the surgeon does the removing but I think that's where their expertise ends. I was looking at an American breast cancer forum and they seem to go quite full-on with treatments - most of them had much longer radio. but then again no idea of the dosages there. There was a scare mongery thread on it about sentinel node biopsy which I had and I felt they were exaggerating how awful it was and frightening prospective patients for this proceedure I did add my two cents worth. Really, I do read too much into things,not always helpful.

Here is a thing about stages vs grades, Maryann - hope it helps. I think grading is the type of cells they're dealing with, while staging is the size and how much it has spread etc.

(starting to know far too much about this)

Cakes I am so sorry to hear about your hair. It must feel horrid, last thing you need when you're already not having a great time.

Thanks again for your help x

thanks Jumente ! how are you doing today ?

Oh not bad thanks...We spoke earlier, she sounded very very tired and down.

It must be a miserable place to be, she's brave as anything. I'm not sure if anything I said actually helped or if it made her feel worse. Is it best just to 'reflect' back to someone, kind of what they seem to be feeling...I don't know.

I probably asked too many questions but tried to just let her talk. This is really difficult, and I'm not even going through it.!

Hope you both have a good evening xx

Hi MaryAnn and Jumente

I do not know much about stages and grades, and do NOT want to investigate Jumente's link too closely (step away from the googling, Jumente, it always leads to worry) - but I was told that my lump was entirely average, rather like myself (I added that last bit ]smile]. Of average size, and average aggression. As I understand it, stage 2 relates to size, and that at this size it is possible that spread may have occurred - this is usually either into the armpit, hence the sentinel node biopsy thing, or into the other breast, which they can't test for other than by monitoring you on an ongoing basis via mammogram or manual check.

As I understand my situation, the nodes in my armpit were all clear. However, because they found these extra cells by chance within the cuff of healthy tissue they take around the lump, they have taken a more full-on approach to my treatment. It was a chance finding, there could be others they didn't get, but this is true of everyone. HOWEVER - sorry if I am misreading you MaryAnn, but I suspect you are starting to wonder whether you should be having chemo, or if there might still be something there that has been missed - the doctors have NO idea whether such a cluster of cells would turn into something or not. Which is why they monitor everyone so closely after treatment has ended. So if you are worrying, please try to stop. They just found something in my case and are addressing it as cautiously as they can. It could be necessary, or it could not.

Jumente - in terms of how to deal with your friend. it is hard to know. Just try to be normal with her, do ask questions so you know what her diagnosis and treatment are, and can get a handle on how bad it is, and just try to offer appropriate support. Turning yourself into her friendly local cancer expert could be less useful than just being a bit more present and available to chat about this or anything else.

Once a week my dh, dd and I go to the bar of a health and social club near my home, dd plays with the kids, we have a few drinks. I have noticed that a number of friends from dds school have started turning up a lot more, and coming to sit with us. I think this is just to be supportive in a social setting - they ask how I am, offer a bit of help and support, then we talk about something else, drink maybe a bit too much and get silly - and then go home. It is not heavy, but it is a bloody godsend, believe me.

That's my take on it but, ultimately - you are her frind and if you keep being so, you won't go far wrong.

Real life does go on, thank God!

hi Cakes - thanks for that - I am afraid I do tend to delve into every aspect and fill my head with probably too much information but I guess that's my way...I think you are sensible in your attitude though ! Your results sound very similar to mine - grade 2 being average, no cancer in the lymph nodes that they removed either - yes, I suppose things can get left behind but that's hopefully sorted by radio. and as your margins were less clear then chemo for you. My surgeon was very confident that he'd got rid of it all !
Am tired and hot today and have to do some work, but not after a big cup of coffee in a minute - I prefer to work late afternoon/early evening in a short concerted boost, but must pull my finger out a bit as deadline is approaching !
One of the things I don't like is the no deodorant on my left side - and Simple soap - it really upsets me,silly but...I have some fab Dior Sweet Sun non-alcohol spray which I waft myself through so that I feel fresher !
Have you 1 dc Cakes ? a dd ?
My son is just 12 and very sweet mostly, but can be a bit pre-teenish which is very trying !

meant to echo your advice to Jumente..
I have been very touched by just how my friends and some of my family have been so brilliant in just being there - the little emails/cards etc - even a lovely present yesterday from an old school friend - I keep thinking how amazing it is that people are thinking of me in such a lovely way..the tiny things are just so nice and make a huge difference

Hi MaryAnn

Glad i did not offend you - i just thought I could detect a bit of a confidence wobble, which we all have, I know. But you are right, the radio is specifically designed to zap any little blighter cells that MIGHT be left behind in the immediate vicinity and, having had it, you will be fine. A confident surgeon is the very best thing in the world!

I have done NO work today. Dh is out and I feel really tired so i have read a book all day. Sorry you have to have your nose to the grindstone, too hot for that, really. But one good thing about wagging a day off at the moment - no need for the guilts, it is on medical advice!!Yay!!

Yes, just the one kid here - dd, age 6, going on 16, as they all are. The bossiest, most know-it-all child I have ever met. But extremely kind hearted, bless her! This morning she got into my bed, gave me a big hug and said "ooh Mummy I am glad that you are all mine!" Then she said "uurgh Daddy your side of the bed is all sweaty you must be really stinky!"

Hair loss has accelerated today - so the shaver is coming out later.

good luck with the shaving - think how fresh and cool you'll feel in this stickiness !
Am still not at my desk, can't settle- will give ds a snack and make coffee then go up...

And I am with you on the no smellies thing - what a bugbear. I love, love, love nice fresh-smelling soaps and perfumes and the idea of limiting myself to Simple soap is most depressing. But I understand that the radio affects the sweat glands temporarily, so at least you have the comfort of knowing you won't honk. Which would be bad.

does it ? even if they aren't actively zapping the underarm ? I can't say that I seem to smell any different - at least I don't think so !!