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Original poster

TAMOXIFEN thread number 8 ********

979 replies

MaryAnnSingleton · 12/02/2011 15:39

just in case we run out of space !

OP posts:
KurriKurri · 23/02/2011 14:37

I think whatever kind you find most comfortable to use LJ - I had a glass one (which I recently broke) - you just need to know if your temp. is going up (and if it does you need to contact your unit and they will advise from there) its just a precaution really - in case you pick up a bug or somethingSmile

I have uploaded a few photos (there were more but I kept getting 'error' Confused) let me know if you can't see them - I'm not very technical Grin

KurriKurri · 23/02/2011 14:39

Hope your back is better soon Cakes - I have been a no show for my classes this week as well - no point going if you don't feel like it, you won't enjoy it Smile

Cakesandale · 23/02/2011 15:09

Fab pics KK - that GORGEOUS dress, two gorgeous kids and a mischievous looking dog. And as I said before, a DH who scrubs up nice Grin

KurriKurri · 23/02/2011 15:22

Thanks Cakes Smile (he does scrub up nice - but he doesn't scrub up often Grin usually it's old jeans and a ratty old jumper!)

Figgyroll · 23/02/2011 15:33

Hi again, ladies. :)

Had oncologist appointment this morning. They've moved the ECG forward a week so it's this Friday. The doctor went through the treatment with me, the cycles, which drugs and frequency and, worst of all, the side effects. I have been asked if I would consider going on a trial for Avistat which is alongside the chemo treatment and which targets the blood supply to the tumour. Are any of you lovely ladies aware of the trials or on it? I am getting a phone call tomorrow from the trials nurse and will say yes but then there will be a 50/50 chance of actually getting on it. I have a blood form and, as soon as my first appointment for chemo comes through, I've got to hot-foot it to the hospital for a blood test.

I'm glad things are moving a bit quicker. I met my hairdresser in the supermarket earlier and she is coming round next week to cut my hair much shorter in readiness for the hair loss. Everyone I've spoken to at the hospital so far has more or less said that, even with the ice-cap, most ladies lose most of their hair so I'm fully prepared. How have you all fared, hair-wise? And apparently the steroids make you put on weight - have you found that? Are we talking a few pounds or a few stones?

Cakesandale · 23/02/2011 15:56

Hi Figgy - glad things are moving. Sad and unpleasant though.

I know nothing about Avistat - sorry.

The hair loss is pretty much a given, you would be very unusual if you did not lose all or most. Sorry - but I know you think it is best to know. I lost virtually all the hair on my head, beginning towards the end of the first cycle and going on from there, really. You will probably find that eyelashes and brows thin also, so an eyebrow pencil would be good. I also bought false eyelashes but retained enough not to need those. It isn't as bad as it sounds, especially if you are stubborn. Get the hair cut short, and start wearing your chosen headwear as soon as the fall starts: it is quite sudden and dramatic but, if you are ready, it really does help. Just go out in your scarf/hat/wig, take a deep breath and look 'em in the eye. You'd be surprised how quickly you get used to is and stop thinking about it.

Thinking of you for Friday - the ECG is really fine.

KurriKurri · 23/02/2011 16:03

Hi Figgy, I don't know about that trial, but I was on a trial and the good thing about them is that they keep a good eye on you and you generally get more check ups. I haven't heard of avistat - but it sounds interesting - it's great they are trying new things all the time - treatment is progressing so fast, even since I was DX Smile

I lost a lot of weight on chemo , but have put on weight since (almost 2 stone) and my onc. attributes some of that to steroids and some to a thyroid problem (and some to greedGrin). I did find the steroids made my face look very round, so changed my appearance a little (but it soon went back to normal) and also they affected my mood - made me a bit more irritable than usual. Grin

I think its common to struggle a bit with weight afterwards - for a variety of reasons, but not everyone does Smile

My hair came back reasonably quickly after chemo finished, but it came back almost white initially, then grey and is darker now. It used to be long and curly, and is now short and straight. (Friends with straight hair have had theirs come back curly). So I think there's a fair amount of variation in hair recovery and change.

I used baby body wash on my scalp and all over - you want something very gentle as skin can get rather sensitive.

LimeJellyforBrains · 23/02/2011 16:08

Figgy - glad to hear that your treatment plan is up and running, and without the delay which you feared. Sorry for you that you're going to be doing the rushing about though - I did find that for a couple of weeks I had appointments coming out of my ears!

Well done for being so pro-active re getting your hair cut. I am still prevaricating and procrastinating on that one. My hairdresser is due to come in a couple of weeks though, so that may be the time to have a bit of a chop.

Do you mean Avistan rather than Avistat? If no-one on here has had this it might be worth looking at the Breast Cancer Care website. here is their info sheet on Avastin. You could try posting/searching their forums to find people who have had it.

I am dreading looking forward to hearing the answer to your question re weight gain!

Well done for getting through today xx

LimeJellyforBrains · 23/02/2011 16:14

Figgy, do you mind me asking which chemo drugs you are having? I am going to have FEC and Taxol. Just ignore this if you don't want to Smile x

Figgyroll · 23/02/2011 16:27

Hi LJ - it's FEC and Taxotere. Yes, it was Avistan - my brains are turning to jelly. Wink

KurriKurri - I'm hoping my hair will come back curly and grey. At the moment it is straight and dyed a mid-brown and I'm fed up getting my hairdresser to redo the colour every 4 weeks. I've been thinking about going back to grey for a few months so if it grows back grey I will leave it be.

Cakesandale - I didn't think about my eyebrows and eyelashes. Tbh my they're both practically non-existant already (a family trait I think). I am going to give Headstrong a ring about learning how to do the scarves and they show a range of hats too. I'm rubbish at fiddly things like knots - I hope some of them come ready knotted.

KurriKurri · 23/02/2011 16:40

A little soft cotton (t-shirt type material) beanie hat is good to wear in bed - it's surprising how cold you can get at night. Smile

KurriKurri · 23/02/2011 16:43

how cold your head can get at night I mean.

Cakesandale · 23/02/2011 16:48

Some scarves do come ready tied - i bought them because I'm clueless.

My hair came back exactly as before, a bit wavy and virtually black. But it has been a revelation just how much I like short hair - it could probably be getting towards my shoulders by now, but I've kept it short and sharp. I think SR is of a similar opinion.

Weight gain - afraid I have it here too. I don't know what's to blame - steroids and greed, I expect. I did NOT lose weight on chemo, it might have been nice The steroids did, however, make me rush around like a loon. And crave wine.

KurriKurri · 23/02/2011 16:50

I'm another short hair fan. I'd had mine long for years - I think cancer was God's way of telling me to get a restyle Grin

Cakesandale · 23/02/2011 17:33
Grin
Figgyroll · 23/02/2011 18:24

Good idea about getting a beanie. I'll see if I can get hold of one.

Crave wine? I already do - but once I get started I'll just blame the chemo. What a brill excuse!!!

"I think cancer was God's way of telling me to get a restyle" - that's so funny. It made DH and me laugh out loud. :)

Original poster
MaryAnnSingleton · 23/02/2011 18:37

just popping by as I must get on with stuff - but wanted to say how lovely KK's photos are - fab children ,dh and dog -and you ,of course.
Am sure ECG will be fine - don't put any body lotion on though- I did and the sticker things kept sliding off !
Thinking of you all,in case I don't get back soon xxx

OP posts:
Cakesandale · 23/02/2011 19:08

Good luck with the work, MAS!

If you crave wine, flipping well have it. That's what my surgical BCN told me (the oncology one was a bit less enthusiastic, but still generally positive). On the plus side, I was told by someone else that if you go in for a chemo dose with a hangover, it cures it pretty effectively. I don't recommend that really, because it is important to go in well hydrated. But I can tell you that, if you go in with a cold, it puts paid to that pretty sharpo.

sandripples · 23/02/2011 19:36

Now KK you're just making me feel totally hopeless in the photo department. How did you do it? (More sobbing)

Good news is I went for my first check-up today and all was fine. Even the mammograms were not too uncomfortable so that was excellent.

Less good news is my GH's department looking to cut cost and have asked about going onto a short week. Am a bit worried.

HAIR! Yes I love my very short hair every day. I also advise getting it cut very very short (half an inch all over) about 2 weeks after first checmo so that (as RWU said at the time) it will sort of blow off in the shower! I found my scalp got quite uncomforatble/nasty feeling as the loss approached and I was actually releived when it all came out in the end. Just felt much better! And I have stopped dying it and people say it looks far better. I am 56 and I think its difficult to keep dyed hair looking right on my age of face - unless you spend a serious amount of money on it!!

I feel so incapable in the tech/photo department ....

Figgy - enjoy your new head-gear and just wear with panache as Cakes said. I was rather surprised to find no-one seemed to bat an eye to be honest. I had to be careful round my DS who didn't like seeing me bald. BY the end when hair started to regrow he was used to it though and didn't mind at all - think he was so glad to see me recovering.

(I did find I gave myslef a shock sometimes early morning if I went to the loo - I'd catch sight of myself in the mirror - hairless - and make myself jump Grin Be warned.

sandripples · 23/02/2011 19:39

Oh, weight. Mine fluctuated quite wildly during chemo. Sometimes I was about 7lb less than usual then it would pile back on. Then I ballooned after the end of treatment so now have got back to where I started before all this happened. But as I was overweight before, I am determined to lose a stone. Thank-you for all your support with this - it does help! Think I walked a lot in Spain, as well as enjoying the wine etc. And did have sawdust Lidl muesli and plain yoghurt every day for breakfast.

KurriKurri · 23/02/2011 19:46

SR - how have you got your profile set up?

I've got mine as visible to all, but my pictures are only visible to 'mumsnet mates' which is somewhere on the profile/photo page - then list everyone you want to be able to see your photo's. (you can have your profile limited to 'mates' as well).

If you still have problems, go to 'site stuff' and ask one of the techs. on there to help (I'm pretty hopeless too - just a fluke I got mine up I think)

sandripples · 23/02/2011 19:50

I've just tried again so try again if you can bear it. I made it visible to all and put one photo! Its says it should be visible on 'Talk'.

sandripples · 23/02/2011 20:04

Hey I really think you can see my photos now - after all this build up you'll be really disappointed that they're so SMALL! I have also just found out how to see your's! Have viewed KK's (Very nice indeed and put mine to shame) so will now try to look at everyone's.

Your's, the dumbo

sandripples · 23/02/2011 20:07

O lovely pix from MAS as well - I just love Celeste!

When I'm a bit more with it I'll make my profile a bit more meaningful (and see if I can put any more pix on!)

KurriKurri · 23/02/2011 20:08

Thumbs up SR - you've got it Smile I can see 3 photo's if I click on your pictures.

Your hair is looking good and you look pretty trim to meSmile

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