TAMOXIFEN -the third thread ***

[MaryAnnSingleton]

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

don't drop your toy in the bath RWU !!
v happy that your mum liked her picture too.
Hope you are feeling much more perky today Pennies
And that's great that you've found a wig you like sandripples !

Hi, for RWU and Pennies about sore noses. I haven't had this although was warned about nosebleeds. I really hope you both feel better very soon.

My current SEs are v mild, I'm relived to say - some fatigue, heavy legs, and indigestion but all manageable. But I'm on Epirubicin only at present, so this is less demanding I think, than your's Pennies. Sending hugs.

I've just pricked my thumb on a flower and have doused it in disinfectant and hope it does not flare up into anything. Its on my affected side as well. Grr.

DS does not like wig -= hm, might keep it for work then.

I have a lot of visitors this week so might not be on here much. Have a good week everyone in case I don't get onto pc. have to go start doing a cooking marathon now.

Glad the wig is nice SR, take no notice of adverse comments, friends and family will always notice a difference but most people won't. I can remember being staggered in the chemo unit that I was the only one without hair until one of the nurses said "How do you know?" and when I looked very, very hard, I could see that some maybe, just maybe, were wearing wigs. They can be pretty convincing.

Pennies, the nose thing sounds horrid. I had no experience of that but, as RWU says, the SEs do clear up usually between courses, so just hang loose and, as Depeche Mode famously said, Enjoy the Silence. I can remember being bored rigid in isolation with swine flu, but the nurse said it was better than the tamiflu or anything else, just having enforced, total rest. Of course you can start to go a bit loopy, but for a few days it will do you the world of good. Bloody hard when you are used to being busy, though.

Evening all. I haven't been on for ages but have had a quick browse through the posts. I am so sorry to hear about your MIL RWU - hope you and your family are bearing up. You seem to have such a lot to do on top of everything else.

Good news re Wubbly's results

Pennies - how are you?? I hope you get released from hospital soon. The idea of complete rest is OK for a wee while but becomes really boring quite quickly.

All on chemo - hope you are not feeling too bad. Re bleedy noses - my DS (6) is really impressed with my huge bleedy bogeys (tmi I know!).

My last chemo was on Friday but it really seems to have hit me hard. I think that I am just so tired now that i have no reserves left. Never mind, it is over and i have a month at least before radiotherapy starts.

Twas my birthday today so I had loads of junk food (DS says you can't have proper food on your birthday) and spent half an hour pottering in my greenhouse. (I really know how to have a good time ). Have a whole set of fancy new tools from hubby for my allotment so I am itching to get going once fatigue passes. Dad is coming in this weekend so may press gang him into doing some digging. (Pennies, my dad is a Dr too but I'm not sure how good that is. As a GP (just retired)he wasn't so sure about a lot of the chemo stuff and he was the only one of my family who really balked at my baldy head!) Poor dad - I guess you never want to see your daughter like that!

Sorry if too long a post I do go on a bit....

I hope you don't mind me intruding on your thread. One of my closest friends was diagnosed with breast cancer at the beginning of February. After all sorts of scans and various other tests, she ended up having a single mastectomy two weeks ago. They took 11 lymph nodes during the operation and when she went back for a check up the following week they told her they'd found cancer in one of the nodes and were going to have to go back in to take the rest out. That operation is happening next Monday.

Once she has recovered from the operation the next steps are chemotherapy (which she is not sure if she wants to have), followed by radiotherapy and Tamoxifen.

She would really like to know first-hand experiences of anyone who's taken Tamoxifen and the long-term effects of taking it. Also, has anyone decided against chemo, opting to go straight into radiotherapy?

Again, I hope you don't mind me posting on your thread. My friend is very dear to me and I am trying to do anything I can to help her through this horrid experience.

Hello tkband - I'm very sorry to hear about your friend, she's probably still feeling fairly shell shocked, with so much happening since her diagnosis.

I've been on tamoxifen for nearly a year now. The main effects I found were hot flushes, and problems maintaining any kind of continuity of body temp. (e.g. I would be taking my jumper on and off constantly). I also feel very nauseous if I take my tablet late in the day. (On the other hand I know people who find it better to take it in the evening).

Most cancer treatments have a pay off in the form of side effects, so it really is a question of weighing up what is important to you.

I think with all these things she needs to discuss her treatment in detail with her oncologist, so she has all the information she needs. Her breast care nurse will also be very helpful in terms of talking through treatment options.

Someone else will probably be along tonight or tomorrow who can give you more info. - I'm probably not the best because I'm on other drugs as well as tamox. - so sometimes hard to know what drug causes what SE !

Your chemo question is hard to answer, it is really a question of weighing up how much it improves your prognosis compared with the efects. And chemo varies so much from person to person. Good luck to your friend and of course you are very welcome on this thread.

Happy Birthday Haggis - nice to hear from you. Hooray for end of chemo, hope you're feeling a bit better soon. I've been pottering in my greenhouse over the last few days - its great. If you are too tired to dig, just bark orders at your Dh and dad.

Happy Birthday haggis and hooray for last chemo ! hope you feel less tired very soon.
Welcome tkband3 - am also very sorry about your friend.
I agree with all that KK has said - at the moment your friend's head must be in a total spin -things become clearer as you go along and she might,after speaking to BCN and oncologist feel 'happier' about chemotherapy - they will be able to discuss her percentages of benefit from the various treatments offered.
I can only speak about my experiences of radiotherapy and tamoxifen. Radiotherapy was fine for me - tiring mainly as I had a fairly long journey and I think that tiredness accumulates. My skin got quite burned at the end but quickly healed up. I've been on tamoxifen for 6 months now and it has been fine too- I was very anxious about starting on it, but have few flushes or any other side effects.

Many thanks MAS and KK for your replies - you are all so lovely and supportive. I'm going to forward a link to this thread to her and encourage her to post herself as I think she could do with some support from people who are going through/have gone through the same thing.

She hasn't seen an oncologist yet - just the surgeon who did the mastectomy (and who will be doing the operation on the lymph nodes next week) and a BCN. Is that normal practice? They've told her she probably won't see one until after she's recovered from next week's op.

You're right - her head is spinning and she's doing stacks of research on the internet which is helping her feel like she's being proactive, but is probably not helping her to feel very positive. But I think she feels like she's in a bit of an information vacuum at the moment - she's the kind of person who wants to have every piece of information possible before making a decision and she feels like the doctors are only telling her what they think she should know, rather than giving her all the facts.

Hello tkband 3. I'm sorry about your friend. I was diagnosed in December, have had lumpectomy and have started chemo, and al having rest of lymph noes removed in April.

I certainly found myself in a shock with my mind reeling all over the place in the first few weeks. However for me there was no doubt that I simply wanted all the treatment I could have, to maximise chances for the future. I didn't even ask what % benefit I would get from chemo - if it helps I want it!

Also please be aware that chemo affects individuals differently - the drugs vary, people's individual strength and health is different and people have different levels of commitments and support. I read too many scary stories and although I know the tiredenss is likely to get worse as the chemo months progress, my first treatment has been perfectly manageable - people get through it.

I agree with everyone else that your friend needs to discuss all this with her specialist and her BC nurse who will be helpful and of course have the knowledge of her case.

Haggis - Congratulatiosn re last chemo. Despite the faituge that is great news. Nice to have a gap before rads.

BTY my dad was a GP too - that's 3 of us!! He worked in a moinig/fishing community in the north-east for 30 yeasr after returning form the war. I'm glad he dopesn't know about my BC (he died in 1993) but I think about him at times for inspiration as we were close. Better stop now before I blub!

Hope everyone Ok, esp Pennies.

My friend who is an oncology nurse is staying for a few days - good to have old friends like this!

Happy Birthday Haggis. I'm going to potter in the garden tomorrow too if the weather's nice.

Hi Tkband3 - sorry your friend is going through all this. I had all my surgery first and then have just started chemo. As with Sandripples I didn't care about the % of improvement, I just have had the mindset tot throw the book at this big time since I first found out. Luckily my Drs are also up for taking an aggressive approach too so whilst it will be hard on me I'm also hoping it's going to be devastating on the cancer cells. I'm not saying that having very young children makes anyone that more determined than someone whose children and family are less dependent on them or anything, but the fact that my two are just 4 & 5 and really need me makes me want to fight as hard as I can.

They released me from the madhouse yesterday, and like a good girl I went straight home to bed immediately went shopping. Bought lovely new sunglasses and some jeans and some silk scarves as well too. Can anyone tell me where you can find a website that teaches you how to tie them?

Has anyone seen Burning Bright around MN at all. I'm a little worried about her and I hope she's getting on OK.

Thanks so much for your posts pennies and sandripples. All information and experiences are so useful at this stage, and we are very grateful.

I don't know if this site will be of any help with the scarves pennies...

Glad to hear you're out Pennies. I bought my scarves from heacovers.com and there might be instructions on there. Mind you I was advised to wear cotton as they slip less!! A friend taught me to tie them as I am not good about that kind of thing, so it was helpful to have someone show me, and I can do it now.

I find I do need really big square scarves, folded diagonally, put on head, to give two long pieces at the sides that then cross over at nape of neck and I bring them to top of head and tie there. Look OK on me anyway!! I know there are fanicer ways of tying but haven't done those.

How is your hair? Mine is still hanging in there fine but it must be imminent!

My friend is valiantly painting our garden fence - it was new last year and I only got one side painted, so she has taken up the job! WE've also been to a garden centre and bought some nice plants for pots.

Here's a couple more sites Pennies here and here and here. If you google scarf tying +chemo or similar, or youtube scarf tying for chemo you get a few things. Can't find a comprehensive site though. Bleeding nose is a pain, I got it esp. at the 7-10 day point of chemo.

On looking through I discovered a youtube video called 'brave beauty' - how cringy is that!

Hope all is well with everyone today - don't worry about your son's opinion of your wig SR. My kids disapproved of some of my hats - I wore them anyway, one looked a bit like a vistorian mob-cap - but it was warm and I liked it!

tk - normal practice for your friend not to have seen her onc. - I saw mine once I was about to start chemo a few months after my initial surgery.

SR - I'm seriously impressed by your friends - they all sound great.

Happy Birthday haggis!

SR - your firends do sound good. I have one who volunteered to come round and trim my false eyelashes so they looked a bit less mad, so good of her, it's a shame I never wore them in the end.

tkband3 - sorry about your friend. Not seeing the oncologist yet is quite normal, that won't happen until she is ready for the next stage. I have been on tamoxifen since November, it is OK, but I'm like KK and find it makes me a bit hot and bothered, especially in bed at night. As for chemo - I dod not really look into percentages, just took all that was offered, and I found it OK. Not nice, and very tiring, but far less bad than I had imagined. Some people have far more side effects, but in general, we all cope. It is only for 4 months or so, and then it passes.

Haven't seen Burning Bright either. A bit worried about her and Morph....

And, Pennies - good on you for going shopping straight from hospital. I think you and I would get on pretty well in RL

Thanks for all the birthday wishes folks.

Pennies - so glad to hear that you are out of hospital and obviously taking it easy!!!!

tkband - welcome.Sorry to hear about your friend. It must be hard for you too to know how to support her at this time. I have just finished my chemo and still haven't seen an oncologist! I was interested to hear the comments re Tamoxifen though because I think that is on the list after radiotherapy.

Lovely day here in Aberdeen and I have been at my allotment playing with my new tools . DH and dad will skin me if they find out but I don't care becaisuse the sun is shining and things are growing and all of that sort of stuff just lifts my spirits. Hope all you other green fingered ladies are enjoying the advent of spring too.

Hello everyone. I'm glad to hear that, despite all the ups and downs, you are all still so chirpy and cheerful - you're an inspiration!

tkband, sorry to hear about your friend. Like everyone else has said, I've not met an oncologist as yet. I am a bit nervous about starting chemo, but this thread has been great for me, hearing the stories from others who have been through it and going through it, it makes it seem do-able.

I'm just back home today from hospital. Had the mastectomy and lymph nodes removed on Monday. I'm a bit stiff and tender still, more than I'd thought really, but just so glad it's done now and I feel like I'm on my way to getting this bugger beat!

Hello Wubbly, its good you are home now, I hope your op.went well and you're not feeling too sore - take things easy.

Its perfectly understandable to be apprehensive about treatment -it's all such a journey into the unknown, but as you say getting started on it all is the way forward.

Thanks Kurri

I've just done my second lot of exercises today and they went much better than the first lot, a lot more confident and not so painful.

My lovely DH has been a star, thought I'm still waiting for the bed to be changed he's slacking a bit now I'm home!

My DS is being a little darling, although a somewhat boisterous 3 year old little darling, he's checked out 'Mammy's booby' and seems quite happy with what's going on. He's told me at least a hundred times how much he loves me since I've got home, makes anything bearable doesn't it

lovely to have you back wubbly - take care and take it easy !

Good to see you back Wubbly, and bless your dh and ds. On the road to recovery indeed! Take it easy!

Hi All,

Not been on for a while. No need to worry, though, Cakes - I'm alright. Just don't get onto the internet as much as I'd like at the moment.

Hope everyone is OK and not having too hard a time of it.

I'm doing pretty well. Recovery from surgery has gone well. My daughter and I have moved back home (until chemo starts, anyway) and I'm back at work on reduced hours, which is great because it feels like a bit of normality.

Saw oncologist yesterday. Chemo to start soon. Could be next week, but I want some more info on the effects on fertility and the possibility of egg freezing first.

It is looking as if more children is going to be off the cards for me. And while I realise that the most important thing is making sure I am around for the child I already have, I can't help feeling terribly sad about the idea that I'm unlikely to have any more. More sad about that, in fact, than everything else.

Take care, everyone.

Hi BB, i'll just quickly comment to you (will catch up with everyone else later!) i know how you feel, although i am pretty sure i wouldn't want any more kids (i have too many as it is lol!), it felt like a part of me was taken iyswim. I am very young to have been having treatment (28 ) and i have had my ovaries removed so it was a definate thing. I had eggs frozen because of my age, i know that if i ever did want another it would be IVF but i helps to know that there is always a chance. hth, it is a hard decision, if you ever want any info on the harvesting process etc just give me a shout, i can give you all the gory details

BB - lovely to see you too - glad to hear that recovery is going well. It must be very hard for those of you who have had the choice of more children taken away or the practicalities of having more children made more difficult- of course your immediate health ma tters most, but I can understand your sadness.

Hi RWU and MAS - thanks for replies. I'm sort of dealing with it and may get some eggs frozen if the timescale is short enough. But I'm 37 (tomorrow) and will be on Tamoxifen for five years, so I'll actually be at least 42 before IVF would be an option anyway and I'm not sure that I'll be wanting to do the babt thing at that age.

I've been single for four years, so more babies were already a 'would be nice if the opportunity arises'. I always wanted a big family but it didn't quite work out that way. It's just the fact that it's being imposed on me. And on top of everything else.

Bah humbug.

[Wanders off grumbling and complaining.]