*TAMOXIGANG* All the fours...44!

[GoodbyeRubyTuesday]

Apologies for the bingo reference, couldn't think of a witty title but the other thread is very nearly full.

In honour of our new thread I have piled extra apple pudding on the trolley so tuck in :)

Hi Malt
I've been a lurker. I have lived overseas for years and never missed the UK until cancer diagnosis. they just don't have the same sense of dark humour here, so you ladies have been a lifeline. thanks! Everyone is so serious about cancer in this town... I almost got sent to psych. for a generally flippant attitude to my initial (overly pessimistic) diagnosis

Done with FEC-T, surgery and 4 weeks of rads so still a week of rads, herceptin until April and then theoretically Tamoxifen until 2023....

Tiny I had neoadjuvant chemo i.e. First Chemo and then surgery, mostly because the tumours were large (>5cm) - and I believe that is usually sufficient to put you on that path.
( It was also indicated for me because mine were attached to the chest wall and very aggressive oncotype with node involvement so they like to get after it with a systemic approach in case it has already spread.)

You are going to love this though - when you have chemo before surgery you get to feel the bugger shrink!!! Highly satisfactory experience! Mine shrank considerably in response to the first cycle of FEC, and were too small to detect with the second cycle - how great was that?!!! Your milage may vary, but I was pretty thrilled with mine

Uksounding I hope you keep posting, think you've got to find some humour in things to keep you sane !
Tiny I cold capped. I hoped I would keep more hair but it started seriously shedding after chemo 2 and has been slowly going ever since. Now I'm almost at the end I do still have a very thin covering, I guess if I hadn't used it I would bed completely bald by now. I'm hoping it will grow back quicker too

Just been out for a lovely lunch, now chilling before the dc get home and trick or treating starts !

Hi all. Interesting reading about hair loss - did most people start getting lots of loss straight after cycle 1? Would be good for me to understand how quickly it kicks in and thus how quickly I should be looking to get a wig sorted.

Malt - it sounds like the cold cap was somewhat effective for you - would you recommend it, or has it been pretty unbearable?

I guess I'm just trying to get a feel for a) when I should get my hair cut short as it is shoulder length at the moment and b) how soon after cycle 1 that I'll need a wig / hat.

I see onc for first appointment tomorrow so will have some idea of timescales after that. Have been in a bit of a bubble this week, no hospital appointments and after being told I was cancer free last week, I think I've conveniently convinced myself that I am fine and that the chemo will be happening to someone else and not me! Tomorrow is going to come as a bit of a reality check.

uk I am having emo first and tumours have shrunk too. Had mine first as large and multiple.

handbags am having FEC and cold cap and still ave full head of hair. Bt then again still need to shave legs !

Apologies for typing but am drunk in the afternoon. One positive of having cancer .... You can get away with anything

Emo should of course be chemo. Have not regressed to self harming black garbed teenager.

tiny I didn't bother with cold cap. My hair just started falling out past few days but I hate it shedding all over the place, and disliked getting clumps of it in my hands when washing my hairs, or even just running my fingers through it. So I got it shaved off today even though it still looked fine.

handbags mine started to fall out 14-15 days after receiving first chemo.

Ahh foofoo nowt wrong with a bit of afternoon drinking. Will it stop my hair falling out too?

tiny blog link, no picture yet as I need to finish a couple of the little engines (Skarloey & Rheneas).
With a 5 yo, 3.5yo and 6 month old, as well as a DH who works in the field (away) I am constantly on the go. I also have limited local family, so rely a lot on the goodwill of friends.

Handbags I'd get a wig sorted as soon as you can, you'll feel better if you have it just in case. They are really good these days people don't know I'm wearing one unless I've told them
I'm still glad I used the cold cap, it's very cold when it 1 st goes on but only for 5 minutes or so then you get used to it. My hospital has the older ones which get chilled in the freezer and you change every half an hour, there are newer plug in type ones I don't know how cold they feel

Hi all

Just back from hospital, had a pre chemo echocardiogram. Waited 2hrs!! Thank goodness I took a book. But all good. So now just waiting for a call with a start date.

My parents are coming to stay tomorrow and then I have an appointment at the wig shop on Saturday! Mixed feelings about that, but will be happy to know that it's another thing sorted. Can I ask, any of you that did have a wig, which type did you find best? Is there a big difference between expensive real hair ones, to synthetic cheaper ones? Any advice gratefully received.

Also is it weird that I would like a wig that looks like my hair does now? Minus a few grey hairs. The few people who I have told have told me that it's a good time to have a complete change, a whole new look! But I just want to be 'me'. When this is over with then yes I will embrace the new look me. But right now this cancer has taken enough from me, I don't want to lose my identity too. Does that make sense? Or am I being silly?

I hope your appointment goes well handbags xx

Tiny - I had chemo first as large tumour (6cm) but after 3 lots of FEC there was virtually no change. So stopped chemo to have mx - the reason there was no shrinkage was that tumour turned out to be mainly DCIS and the IDC part was particularly unagressive so was not responsive to chemo. Now I am having the rest of the chemo but I had the option of not bothering.

re hair - I did cold cap for the 3 FEC cycles and hair thinned but did not all go but I hated it and it made my sickness worse. Not doing it now as I am having weekly chemo but to be fair after 5 weeks virtually none has falled out (a lot grew back in the gap between chemos).

Really - I've just started to wear my wig (did bandanas in the summer) and am loving it - it is synthetic (but top end of synthetic range - paid for my private health) and it really glam - I get loads of compliments when I wear it . I picked a style that suited me rather then a replica of how my hair was - so it is lighter and straighter then my own hair. I tried on a range and did think there was a difference as you went up the prices - mine was £174 I think (after VAT was taken off). It is by Rene of Paris if that helps.

I second the Rene Amore range of wigs. I got so many compliments on how wonderful my hair looked when I wore mine. Likewise, I wanted to be 'me' or as close as I could get to it. Others have a different set of needs re hair and that's fine too, of course.

Really mine is synthetic, I heard they were easier to look after have only washed mine once and it looks fine. I had long hair but had it cut into a bob when I was dx and my wig is a bob the same colour as my natural hair, so people just think Ive had a haircut !
Mine was £150 from a hairdressers which has a special wig room

Thanks ladies, very useful info, as always. I think this could be the point where things get very 'real'

But you have all got through or are getting through it, and so will I. It's weird how on here I am very honest about my worries and concerns. But when it comes to appointments and things, suddenly I become much stronger and I even manage to laugh and joke about things!

Think this board and all you lovely ladies have kept me sane! So have a lovely piece of chocolate and glass of on me you lot are absolutely amazing xxxx

Just a quick update from me while we have a 3G signal (disappears when it rains!)

My lovely neighbour has been stalking my post and the letters came today, pre-op 5/11, surgery 11/11, eek not long now, although I will be glad to get rid of Boris and baby Borises.

It has been lovely to have a holiday, but frustrating how easily I get completely knackered... Home on Saturday then a busy week (two birthdays) before the op.

Hope everyone is ok, off to catch up if 3G holds out!

Really I can also vouch for a good synthetic wig. You can't tell the difference and it is easier to care for/longer lasting. Get one from somewhere you can try them on and get a hairdresser to trim it to suit.
People at work today kept telling me I look really good and healthy - can't say I feel great after six cycles of Tax but the combination of my new hair style and the most thorough chemical peel ever seems to have worked!

Just got to tell you all that I am excited as have booked to take the kids to see Matilda just before Xmas - tickets, hotel and restaurant booked - I'm determined to make the most of a month without any treatment and give them and me a few treats . All a bit spur of the moment but I saw good seats (and prices) available so just went for it - still a bit chicken though and included the cancellation options .

Good for you KitKat I am sure you will all love it. What a great pre Christmas treat! As for cancellation option. I would just say that's sensible xx

Betsy glad you've got a date now and Kitkat that sounds great, something to look forward to

Welcome UK, do keep posting. I was told my tumour was large and there is also lymph involvement, so perhaps that is why, I will have to ask. I didn't think to question it at the time, I just assumed that everyone had chemo before surgery until I came on here and found that wasn't the case. Well done on shrinking the not so little buggers - looking forwards to doing that too. I have had a marker put in so the surgeon knows where to operate, as I was told it could shrink to nothing!

Handbags - Afternoon drinking might not stop your hair falling out, but I bet it stops you giving a sh*te! I am 13 days post first chemo session and have a full head of hair. My BCN told it will start falling out on day 17, apparently you can set your watch by it.

Mumof2 - I have just seen that our posts crossed on Tuesday evening - glad your port-a-cath op went well. Mine is tomorrow evening, what a way to start the weekend. For some reason they want to knock me out for it, rather than do it under local.

Knitting - Loving the Halloween outfits, your children are adorable.

Thanks all for the feedback on the cold cap, maybe I will persevere with it. I just hope that if my head hair falls out, then any unwanted facial hair/leg/pit has the good grace to do the same.

Thanks for advice re wigs and hair loss ladies. Sounds like its worth giving the cold cap a go, even if it turns out to be horrid!

Really - know what you mean about getting a wig that looks like your real hair. I will probably do the same (albeit one that's in much better condition and isn't really grey and inclined to go frizzy in the rain).

Kitkat - Matilda is amazing!!! Am sure you and your kids will love it. Mine became completely obsessed with it after we first went (have subsequently been again). We bought the CD when we first saw it and I swear my girls know the words to every single song (and I might know most of them too as a result). Have a completely wonderful time!

really totally understand wanting hair like your own. In my case, I had (IMO) lovely soft curly hair. I choose straight hair wig, in the style my hair would be if I straighten it. Seemingly, straight hair wigs are easier to maintain?
Anyway, I actually look younger in my wig than with my hair. (My own opinion, verified by a few that know me well). Maybe I'll change my hairstyle when it grows back.

I'd say try on as many wigs as you can, and pick one that looks most flattering. Take photos of each one, to be examined at your leisure. Even it is different than you 'normal' do. Use it as opportunity to figure out how you'd like your hair post chemo!

Best of luck. And remember, chemo is most likely not to be as bad as your are expecting. I have a very easy cycle one. Crossing my fingers that cycle 2 is similar.

xx

Tiny best of luck for your Port-a-cath insersion. 2 days later, mine now feels quite comfortable.

malt I got a good synthetic wig (only earlier today). So far, I'm very happy with it.

My one question would be to get commitment how to make best md-center crease, and how to rally the cattlesanimals once bugle sounds

Yikes, what did auto-correct do to my last sentence?????? (Note to self - read before posting!!)

My one question when trying on a wig would be to understand how to make a crease which compares to your normal crease. For me, that is a mid-center or side-center crease. My wig (of little experience, today is first day) has a fringe, I want to understand how to put a side parting.