TAMOXIFEN -the third thread ***

[MaryAnnSingleton]

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

I remember tingha and tucker and Auntie Jean I see on that clip it also mentions Twizzle - we used to have a Twizzle story book as kids - when try to explain it to DH he looks at me as if I'm mad (it was a boy who could make his arms and legs really long by twizzling them!)

Enjoy soaking up the warmth RWU, and sipping posh coffee.

SR - I haven't had any probs. with lymphoedema, can't remember if I had the blue dye - I expect did. At the keep fit group I go to for women with BC. There are a couple of ladies who have it, but they had their surgery quite a few years ago. Try not to worry - and don't read stuff that scares you!!

I'm feeling very moody today. I weighed myself yesterday, and have put on weight. despite all my efforts at exercise etc. Its rather downheartening, I presume its the drugs, because I'm not a big eater. I'm feeling unreasonably cross with DH - he's all 'don't worry about it, you look fine' but he does no exercise, eats crap and is thin as a rake - the swine

rant over! Off to do some swimming and yoga this afternoon. All the best to everyone.

ooh Twizzle !! I remember Twizzle !

KK -about Twizzle

I had Twizzle story books too! Don't remember the TV programme though. Do you think I am too young????? (snort)

KK - I don't know why men seem to be able to do that - just stay the same all the time. B***ds. I bet it is the drugs in your case, especially as you have been doing so much swimming. I have put on weight too, hence the diet. I think it's the tamoxifen in my case. That and the booze. But I've cut that out now, so we'll see. At the moment none of my clothes fit and I'm not buying big ones, so the need to lose weight is quite urgent .

And I apologise unreservedly for my earlier hugely insensitive remark, which was meant as a joke against myself. I am mortified and have asked for it to be removed.

Just popping on to pick your collective brains yet again. SR - am glad to hear you are feeling well and

My mum is three days away from her second chemo. My sister and I are wondering how much her tiredness is chemo related and how much it is some level of depression.

Mum is a fairly young 59, works part time (not at moment), has a couple of close friends but is quite shy so was never the party animal. She is by far the quietest member of our family (my sister and I take after my dad) and she finds it hard to discuss feelings/thoughts with us - partly, I think, to protect us.

Since she had the first chemo she has only seen the grandkids for about 10 mins at a time (and never all three together) as we didn't want to make her too tired. She also has only seen them when she felt up to it and we're really careful not to suddenly turn up with them. But my sister and nephew went round for 10 mins yesterday and mum wouldn't even walk to the window to see my nephew wave at her (he was on the slide outside). She adores her grandkids so this worried us enormously. I know from you guys that everyone has different SE at different levels but we really thought she would get a couple of good days before the next chemo but so far there have been none.

Did any of you have counselling or receive any help. She doesn't have a named oncolgy nurse at Christies yet (the nurse was off last time) so I don't have anyone to ask until Thursday.

Cakes - don't worry, I'm not even sure which remark you mean so its gone right over my head anyway!

RWU - nice to see you. Did you mention sunshine? Its perishing here in the NW this nmorning. I'm just about to snuggle up on sofa to listen to Archers and watch a DVD! One quick walk to post a letter was enough.

KK sorry you're a bit down. I was going to be good today. So I had a whole meal roll with salad and a bit of fruit. Then the left-over home - made rice pudding sat looking at me, glaring. So a bit later I had a bowl of that WITH CUSTARD! It was lovely. Anyway I'm still recuperating - can perhaps stretch this line till end of today as that will be a week. I think custard is very good at fighting infection isn't it. Anyway, try not to be too down, and if you're up to it, go out for a walk instead and you'll feel better.

I feel slightly inadequate as a dear friend in New Zealand has e-mailed with her account of a big 'tramping' holiday they've just done with their 3 boys. Mega hikes, sleeping in huts etc .My DH and I haven't managed to inspire a love of walking in our DS - he's usually on his pc or guitar upstairs. He does seem very well adjusted though, and he is doing the Duke of Edinburgh silver award now. he just doesn't like family walks very much. He will come out with me for an hour's quick walk if I ask him nicely!!

Mind you there's not much else to do in NZ apart from these natural activities so perhaps its different.

NBB - poor old Mac does sound down. It may be depression or she may feel self conscious about looking different?

I think she does sound like she needs support, perhaps call the chemo suite and tell them how she is feeling and that she has no named nurse to talk to. I think they will try to help before Thursday, she should not struggle on like this until then.

I didn't have any counselling myself but many people do need it: I can see why she would not want to burden you, someone who is outside the family would be good.

I hope someone will come along and offer something more concrete. Poor mac, and poor you.

SR - thanks, glad you missed it. it was a crass thing to say, I was thinking about myself and did not see how insensitive it was. Twit.

And custard is definitely good - think of all that calcium. Bound to promote healing...

Sorry I x-posted with you NBB. I hope Christies will suggest someone yr mum could see. I haven't seen a counsellor but I have found friends and family very supportive. If your mum is reserved, she might prefer an external source of support.

I forgot to reply earlier that I did not have the blue dye/SNB. This is an example of something that seems to be best practise and wide-spread now but I didn't realise it when simply going along with my local hospital in early days after DX. I certainly didn't realise the connection with lymphodaema till much later. The surgeon I have does not use this technique although he is highly regarded. I'll see him on Wednesday and find out how many nodes he removed and how many - if any- were cancerous. Meanwhile I'll keep doing the exercises.

Good luck on Wednesday, SR. I am keeping everything crossed for a good result. And ask him about lymphoedema, I bet you he is reassuring on that front.
xx

Feeling a bit better now having done some swimming and yoga - and I had a restrained banana and peppermint tea

I missed your post Cakes - so don't worry - I've done exactly the same thing in the past!

I'm so sorry Mac is feeling down. I had a few sessions of counselling which my BCN arranged, and found them quite helpful. My oncologist put me on anti-depressants, and I had a good long talk with one of the oncologists, and she really helped. She can ask to see a doctor when she goes in for chemo - and they treat depression with just as much seriousness as any other side effect.
Feeling down is a very normal reaction to a very abnormal situation.
I also found my GP very kind and helpful in dealing with the emotional side.So that might be another source of help. The Macmillan helpline could also be helpfull if she wants to talk things through.I hope she's feeling a bit better soon. She shouldn't feel she can't ask for help.

Thanks for the Twizzle link MAS- don't the puppets look old fashioned - I'm showing it to DH, to prove it wasn't a strange dream!

Good luck on Wednesday SR, - hope it all goes well, the custard sounds good - I fancy some now. My DS is not a great one for walking, but DD loves it - and is near the Peaks at University so some lovely walks.

Thanks for your good wishes Cakes and KK. Sorry I seem to be hoggin this a bit today, but another question. This is because I am not usre if I'll be seeing my surgeon agaoin for ages after Wednesday if all is going well so I want to ask him about the hormone therapy.

He has mentioned Tamoxifen in the past. I wonder why this is receommnded above one of the others which are the aromatase inhibitors eg Arimidex. The BCC site seems to think the latter give higher chance of non recurrence amongst post menopausal women. (I was post menopausal at Dx). You might not have any views on this as I realise I am the olderst amongst us , but if you do have any thoughts, please let me know. And is it the GP or the surgeon who decides on the type of Tamixifen - now that MAS has alerted me to the fact there's more than one? Thanks in advance.

Glad you're feeling better KK. I look forward to when I can swim again! Might try a walk tomorrow. (All the school children have had a warning about a nasty lurker/possibly attacker round here though - very unusual for here. But I'll go with a friend)

SR - I'm not sure about tamoxifen v arimidex, I've only been offered Tamox. - but there's a link here which gives the NICE recommendations - certainly worth bringing up with your oncologist to find what's best for you.

As far as different brands are concerned, probably GP is the best person to discuss it with, as he/she will be the one prescribing it. I started on one brand, then the pharmacy attached to our surgery changed it to wockhart brand - no reason given, but I just went with it. I know some people prefer one brand to the other

I think it's the luck of the draw,esp as they give the generic tamoxifen now - am pretty sure the brand doesn't really make a difference as it's all the same drug..but I still check that it's Wockhardt all the same.
Anti-depressants have worked well for me -they're really for my OCD and anxiety but I imagine the dx didn't help my mental balance..
(am on venlafaxine btw- compatible with tamox.)
Please think of me tomorrow -head bump op at 6.30 -am feeling nervous !

doh - 8.30 am !

Fingers crossed for you MAS - sending you good vibes. At least its early so you haven't got the whole day to think about it. I'm sure all will be fine. xx

SR - good luck on Wednesday when you get your results. I think the lymphoedema is talked up a lot. When they couldn't get a vein in my right hand for chemo they used the left even though I have had a clearance on that side. the chemo nurse said that in all the years she had been doing that work she had never had a case of swelling.

KK - I so sympathise with you re putting on weight. I have put on 2 stones .

NBB - Hope mac is feeling a bit better.

Had my first rads today - bit scary but OK.

HI just joined and was having a mooch thought you may like to know i had bc 14 yrs ago at 27 had doub mac and rad and chem tamoxifen for 5yrs got thin then fat and continue to do so to this day with no excuses.
All surgery still bearing up although on side will need a tweak at some stage soon and i do have to be carefull lifting heavy objects whixh i see as a fabulous excuse for many banal household tasks.
Had dd 8 yrs ago too which i thought very clever.
Anyway good luck and if you want to ask anything of this bc veteran please do.

Thanks Haggis for sympathy, its a pain putting on weight isn't it. Good to have got started on your rads. Its all a bit daunting at the start, and a bit of a bind going in every day, but the time goes fairly quickly. Hope you get on fine.

Lovely to see you Ledkr, and welcome - its great to hear positive stories from people who are further along the road - you were very clever to have your DD, - well done, that's brilliant

hi ledkr - nice to have your advice and experiences - and excellent having your dd too !
Thanks KK for good wishes - I'll be ok once he gets started !
Sending good thoughts to NBB's mum
and well done for first rads haggis -it should speed by...

Hi all!

Ledkr - welcome to Mumsnet and this thread - thanks for your positive story, and well done on the procreating!

Good luck MAS - hope it is all over by now - let us know how it went.

Glad to see you have started on the next chapter haggis: I always saw this as the home strait!

Hoping for some news from RWU soon - not more than she wants to say, but just hopefully that she is getting back on an even keel...

am back - no fainting-bit of blood but am going to leave it be (Dr H suggested rinsing my hair but I can't look at pink wter -will wash it tomorrow) Alan Titchmarsh in the waiting room. Hope all are doing ok today. Good luck for 2nd radiotherpay today haggis.

ooh, I wonder what's up with Alan (nosy emoticon)

Glad all went well! Sounds much less stressful than last time, thank God doctor didn't say the 'O' word, he's obviously learned his lesson!

he did say he'd dripped a bit as he dabbed my hair - I said 'not blood ?' and he said it was, but it was less stressful than before and he definitely didn't say the O word...
I was imagining Alan T having a well man check. He seems to be with the nice doc who gave me my swine flu jab. He must've been waiting for something because he came out before I went in and was still there when I came out again.