*TAMOXIFEN* the 5th

[MaryAnnSingleton]

in case we forget and find ourselves at 1000 - here's a fresh new thread !

I got on a bike once, a few months ago and it was ghastly so I'm not going to try again till next spring!

RWU - you are just SO impressive - you've achieved such a lot! How fantastic to be nearly ready to move in with all that decorating done and garden sorted. Young farmers - what a good idea, pity I don't know any!

Thanks everyone for various tips about the lack of balance. Yes it could be linked to dehydration, although I usually dronk 7-9 mugs a day. I read an article on low blood pressure which said it helps to drink a large glass of water in the morning when you wake, wait for 15 mins then get up. I've been doing this and it does seem to help. After 20 mins I'm fine, so just have to be careful - KK I haven't actually fallen over yet as I've managed to sit somewhere when it happens!

Now for a major confession . Its possible I am a complete fraud on this thread. here's why....

All through my treatment the Drs have talked about Tamoxifen. So I go up to GP's today to collect prescription. Lo and behold, its not Tamoxifen, its Arimidex!! I have phoned the oncologist to ask if this is right, and if so, to brief me on SEs as we had not discussed them.

I asked the surgeon a few months ago about why Tamoxifen and not an aromatase inhibitor. He said it was because I was young and that the SEs from aromatase drugs are more severe and some people can't even get out of bed. So now I'm rather concerned and want to speak to the onc - he's back on Wednesday apparantly. Fortunately I really like him but this threw me a bit.

Cupcaked and Cakes - yes indeed, we're all different after this experience I reckon. And need to wallow sometimes - I think limited wallowing is healthy - its when it becomes permanent that its a problem. So far I haven't had a massive scary wobble (apart from at the diagnosis) but I can feel it hovering somewhere. I do use distraction a lot - ie keeping active abd busy with loads of little 'projects' - not sure if this is denial but it works for me so far. And I'm always so tired that I haven't had trouble sleeping, except, again, at the beginning.

Haven't even opened the article about Carrie's mum and will stay away from it.

Whoever asked about Tamoxifen, my onc said it would start a month after my last IV ie so 2 weeks after last tablet of CMF. Not sure if you've been on a different drug regime though.

I've got a streaming cold at the mo. Bit better today thank goodness. Don't want a cold while I'm in Italy next week! (Its the 1st cold since my DX in December - probably means I've relxed my defences a bit!)

Cupcaked- I've just read your post on the BC thread. Are you trying to reduce your dairy intake by any chance? I've read about some women who do this to reduce any possible risk. Its a challenge in my family who are all dairy-eating vegetarians so I've relied a lot on cheese and milk based sauces. I am now more conscious of these though and am trying to reduce my use of dairy produce. I find it difficult to imagine doing without it altogether though.

Pennies- did the Centre cover this at all? And also did they cover the issue of having more alkili than acid foods?? O no, do I have to give up chutney?!

Have made lots of soup over the last few days, as it happens - loads of lovely pulses and veg - now have one panful and 3 lots in the freezer.

Must be something in the air, as I've been making soup too. Carrot and coriander; there's a large vat of it in the fridge! I'd read about dairy, but hadn't heard about alkali/ acid balance, so yes please Pennies, spill if you know owt.

I'm not sure what I think on the dairy side. I have been trying to only eat organic only since diagnosis, though have never even researched what they do to their cows Also reduced the amount I eat. I asked Onc right at the start of treatment and she said she didn't advise anything other than eating very healthily. She wasn't too impressed by the no-dairy idea, but then again she could easily be wrong.

Cakes - does that mean you're going to have another smear ?
I think we could all do with a course of Mindfulness to keep ourselves in the here and now,rather than worrying about the future !

SR - we could make it the tamoxifen/aromatase inhibitor thread !! Lalaa was on arimidex - you could ask her what it was like.
One of my friends had her first ever routine mammo today -as my friends go through it I do feel pangs of anxiety.

Can I be really forward and ask you to take a look at my work on folksy - am touting for business
If you think any of your friends or family might be interested too,perhaps you could forward the link to them
www.folksy.com/shops/kinddog

duh !
www.folksy.com/shops/kinddog

Cakes and SR, I think the bike thing was an 'up yours to cancer' kind of gesture. Possible dim as my back aches now, but still am glad I did it.

SR, meant to say that I think Arimidex sounds kind of exotic, though I can see why you want to ask lots of questions. You most definitely aren't a fraud though.

MAS, site looks most impressive and I love your work. Can't think of anything useful to say other than that. Do lots of people use the site? I hadn't heard of it before. Can't believe you won't win a lot of sales though. I will forward to a few people, I promise.

thanks smee

people tend to sell and buy on folksy-sort of among themselves - you have to work quite hard to keep your shop seen-other shops blog about each other -I can't quite keep up ! am useless at pushing myself really.
Aromatase inhibitors always sound quite perfumed..
Am fretting about my niece -just heard that she is having problem with ongoing ovarian cyst-she's had one ovary removed a few years ago-apparently this cyst is growing and parts are solid and not fluid filled as before - do you think that's a really bad thing ? am scared for her.

next update

DD's room set up and ready for the bed, curtains up, bookeshelves filled etc etc etc

Living Room set up ready ditto above.

Dining room ditto above

Boys room 1 ditto above

boys room 2 ditto above

Bathrooms- useable but cluttered with decorating paraphenalia

Kitchen....................... urm!

Playroom...... can't find it for junk!

Spare room filled with junk

Our master bedroom- sil is putting the final coat of paint on it as we speak, then curtains need to go up wednesday (i'm having a day off tomorrow to finish packing and it's dt1&2's birthdays so i'm taking them to kfc with some mates for tea) then it'll be ready for the furniture.

3 sleeps

RWU that is amazing. When ur finished could u bring ur army over to Belfast, I really could use you!

Smee, 2nd wk of rads absolutely fine. In the last 4 days I can feel I am more energy and am definitely pinker, tho my blood count had fallen quite a lot by last chemo, and I was a bit dizzy. I could not have contemplated any sort of exercise, even dogwalking was difficult tho easier now I think. But skin fine so far, or at least no worse on rads. So no trepidation required there. I started tamoxifen 3 wks exactly after last chemo. No s/e apparent there either yet.

SR, I think Arimidex is used for postmenopausal BC? About dairy, no it would be a huge step for me to cut out dairy and I don't think there is enough evidence, and indeed it's a big part of my protein and calcium intake, so would not do it lightly. But I think I may well switch to organic, or I def would if I knew that 'organic' cattle were hormone free, and am going to try to find out, I know there are standards somewhere. If I didn't have a hormone sensitive tumour I would be less concerned, but taking a drug to block oestrogen and then getting a load of extra oestrogen in diet doesn't make sense. Might also be in red meat of course, and I don't eat v much of that.

If one more person refers to Carrie's mum's story on the BC thread, I am not going back to it, I can do without those vibes!

wow -RWU is amazing (have seen photos of lovely,shiny new house on facebook too)

SR, I know just what you mean about feeling something 'hovering', that is exactly how i feel. I don't know much anything about arimidex I'm afraid. i just took what I was given [mindless obedience face]. Ask lots of questions!!

MAS - I will go and look at your site in a mo - but in the meantime, yes, I am going to have another smear. Like everyone else i absolutely hate it, but I will only have a niggling worry if i don't. Gulp. I'll make the appointment soon(ish).

I think we should indeed make a block booking for a midnfulness course, maybe we'd get a discount for bulk.

Smee - you are excused then, as long as the cycling was an 'up yours' gesture to cancer.

I remain in total awe at RWU's industry.

DD seemed a bit better yesterday after school: I think she can see that efforts are being made to sort things out - and she has a new boyfriend, which has also helped. Apparently it's love

MAS - those are really lovely. I think I might like a picture for dd for Christmas, for her room. I'l have a chat with DH about subject matter and get back to you....

ooh Bless your dd with her boyfriend- aww

Spoken to him, we agree it'd be nice, we are thinking about content. I'll let you know on the Folksy site. Excited now!

and hope going for the extra smear is ok-I loathe them,would rather go to the dentist or have my head bumps removed (with extra bleeding)
I was given a thing to remind me about flu jabs so have booked mine - it now lists people having radiotherapy as well as chemotherapy. Am being done as lack of spleen means low immunity.

that was quick cakes !!

MAS, had a quick look at your site, you are very talented! I will definitely keep in mind, would be a very special and different present. How about add the word 'personalised' to your keywords? I hunted high and low for a 'different' personalised present for my new godson's christening and ended up with some boring engrabed pewter object. But he will have a 1st birthday next summer, know where to find you now.. Would a photo help you with size, shape, colour of people and dogs? Sorry, questions better for folksy site.

thasnk you cupcaked- will add personalised -good thought.
I usually need reference for things like people & pets, any general info about what they like etc...

Oh yes, dh and i work alongside each other like Tweedledee and Tweedledum so it's no difficulty to have a chat about strategy and stuff . I am rooting out a few photos that may help, this could take a day or two.

Flu jab? I wonder if i should have too. Mind you, I have had the swine flu itself so maybe no need, will check though...

Hi, there seems to be a lot going on !

RWU - yay for all that extraordinary progress - you must have a real army of helpers - great. How exciting for the whole family. Now did you remember the prawns??

Cupcaked - yes Arimidex is common for post-menopausal women - its jy=ust the sudden undiscussed change that seems odd. So I will talk to onc tomorrow. Am worried that SEs could be more severe after what the surgeon told me months ago. ('Some women can't get out of bed....')

Useful to know that some poepl feel fine on Tamoxifen! Good luck to those still having rads.

Cakes _ I hope you like the boyfriend?

MAS - hope your niece is OK. Its worrying tho good that the Drs are onto it. I also like your web-site. If you add more examples to it, it will develop and be even better. I do admire you artistic creative people. Did you watch University CHallenge last night? It was University of the Arts London vs Imperial College. The former trounced Imperial who didn't seem to know anything outside their science! (Ahh, poor things, I think they need help). The Arts team had one member (a painter student) who had an amazing array of knowledge and did well for the team. Perhaps he's a modern Leonardo!

Am a bit fed up with this cold. Want my immunity to pick up and fight it off. NO raised temp. tho, so I suppose I just let it run its course. But it had better a move on as it has to be gone by the time I go to Pisa.

Thanks for the comments about dairy. I think the main advice is to eat a wide variety of healthy foods and not too much!

oh yes, RWU's prawns !
thanks v much for nice words about my work too
I did watch University C (one of our favourite programs ) and was delighted that UAL trounced those science bods -my art school (Chelsea) was wrapped up into that group of London art schools along with Camberwell,Wimbledon,Central St Martins - I am an alumni

tsk alumnus

Ah yes, the prawns! Do tell!

As regards the boyfriend -haven't met him but he is an older man (8!), slim with red hair and a tendency to be quite naughty. Don't panic, I think that means talking in class

MAS forgot to mention the niece. I hope she is OK.

SR - lots of colds around: be kind to yourself. You have done very well not to get one for so long.

at older man...
thanks - am hoping all will be well with my niece, poor girl.