38th tamoxifen - waiting for summer in the bus shelter

[Gigondas]

New thread.

Hi all just popping in before bedtime to say hi to makingdoo - sorry you are dealing with this horrid disease in your family atm. I just wanted to mention my hair loss experience in case it is any use to you/your SIL. I had long very thick hair and lost it just before my second cycle of chemo (despite cold cap with didn't work for me) my hair came away all in one go - it came off my head like a hat which was pretty disconcerting - other people lose it more gradually I think, and don;t always lose it all - have wispy bits left.
On reflection I think the hair loss would have been a bit less traumatic if I'd had it cut short beforehand (I didn't because I was trying the cold cap), and from what I've read of others experiences a lot of people would recommend getting it cropped before chemo to lessen the impact.

I would also say that my hair has never grown back the way it was, I keep it short all the time now, and in some ways the fact that my ;old hair' never returned took more getting used to - the new hairstyle is OK, but I didn't choose it, it was forced upon me, so I slightly resent it!

Sending love to all - will catch up properly tomorrow - very long and dull committee meeting tonight - It thought it would never end, I was stifling yawns throughout!

Glad the first chemo went OK Earth. xx

Urge, had a really weird dream about feeling cancer spreading round my body. It's given me the heeby-jeebies so now I can't get back to sleep...

And of course urge should be urgh, damn autocorrect...

I had a dream last night that I was one of the hairy bikers and I was making christmas dinner! I had a beard and everything, it was quite good fun. I enjoyed riding my BMW it was a joy to park. Sorry your dream was not as enjoyable Betsy.

I met my bcn once five years ago. I am very envious of people who had/have a decent amount of time or contact with a supportive bcn. It does seem to vary.

Has your sil thought about donating her hair Makingdoo? It might help her if she knew it was going to be used to help children with cancer.

I used to wish that my cancer could be put to use in some way. I wish I could run into a burning house to rescue a child or something. Obviously I would be rubbish at that sort of thing. I do wish I could at least donate my organs. It is so pointless.

Malt -just thought I would mention that I will be able to use deodorant today as all my dressings have been removed and surgeon was happy with the healing - hoepfully no more stinky feeling!!
I didn't actually ask if I could use it but he said it had healed well so I reckon I must be OK.
picc line for me today then a visit to fit the cold cap.

Betsy - are you having the T bit of FEC-T as you are also PR+ - is that how it works?

FEC + T is more effective against cancer than just FEC by itself. FEC is alright for well behaved cancers. Anything larger or more rudely behaved tends to get T after the FEC.

Wigs: google Rene Amore wigs. Mine really were lovely, and half the cost of human hair ones. I don't have shares on the company, either.

And I wasn't arrested yesterday!

Trice it does seem pointless sometimes I agree, what are your plans for today ?
Kitkat good news about the deodorant I may as well wait and ask my surgeon tomorrow now, tomorrow eek!
Amber I googled those wigs and watched a YouTube video of them too they do look good. A lady I know has permanent hair loss after radiotherapy on her head do I will ask her where she goes locally to get her wigs, she has a few for different occasions and gets them cut and highlighted
Betsy dreams are horrible sometimes :(
Mas saw the link you put on FB wish that had been available to me would have saved a lot of waiting

What's everyone up to today ?

ah thanks Amber - think mine is large but well behaved so that must explain why I'm not getting the T bit. I didn't want to miss out on anything I needed

My mumsnet i phone apps not working today anyone else ?

My phone ap has only just come back on line Malt .
I was beginning to get the jitters without it ...

Kitkat, Taxotere would only give you another half a percent survival chances - (I've just plugged your details into their medical calculator for it) but it carries more than a half percent chance of doing serious mischief since it's a sod of a chemical. And your survival odds are very good indeed even with a large lump. They use T when it's an aggressive sort or has escaped from the breast. So I can see why the Onc went for just FEC.

wow thanks Amber you are very knowledgeable

The size of the lump seems to be important from a surgical point of view but not so much to determine the treatment plan. Seems there are lots of 'grey' areas where treatment decisions have to made - eg. yesterday my surgeon told me that as my lymph nodes were 'effectiviely clear' (there was one borderline micro mets on the first node only - out of 2) he would not take any more out as the benefits of removal were out-weighed by the benefits of keepng them.

kitkat, There are many different types of bc, Ductal which is in the milk ducts is the most common, then Lobular (in the lobes). The treatment is typically the same for both - any differences are usually due to the tumour profile ie hormone status, HER2 status and Grade.

And Amber is on the money re FEC and FEC/T - and the Rene Amore wigs!
Not that I am an expert - I bought three - and never wore them! I hang my head in shame here, but I think wig shopping became a distraction for me from the serious business of cancer.

Another vote for rene amore wigs. The human hair ones were eye wateringly expensive. That said wigs are horribly uncomfy in heat for any length of time so a hat/scarf/buff may be good alternative ( I got big sunglasses so could perfect what I thought was Maria callas look but pro ably looked more bet lynch after a night out).

Hands amber a biscuit - remember there are lies, damn lies and statistics.

Annoyed at iPhone app being pants but probably just as well as need to work.

Copt- after our discussion about sleeping, we had another bad night with mini gig refusing to settle til gone 9 (I know this sounds early but if you are up pre 6 that is dh and my adult time gone ). She is going to goon dogs kennel if this keeps up.

My app is still not working :(
Drove today ! Only to sainsburys but freedom !
Talking wigs my friend told me about a fringe on a headband to wear under hats snd scarves which she said worked for her too

Morning all,

Hugs to amber and anyone else who needs them! When the statistics freak me out I remember that the genetics specialist said the chances of this happening to me were less than 1 in a million, so if I can be that unlucky then I figure we can all be lucky too and well done for avoiding arrest amber

Had a cat try and get into my bedroom yesterday, well would've succeeded if I hadn't shouted at it. Felt bad as it was quite cute but it's not our cat! So I was a bit worried it would sneak in during the night and get into my bed or something

makingdoo just to weigh in on the hair issue, mine hasn't all fallen out but a lot is coming out at the moment. I'm halfway through my penultimate cycle of chemo. It isn't noticeably thinner though apart from that when I put it in a pony tail it feels thinner to me, if that makes sense. No bald patches or anything. I think your SIL would be better waiting to see if it does come out before cutting it all off as otherwise would be a rather unnecessary trauma if she loves her hair :(

copt grrrr at tag, did you pay by card? They might accept a bank statement.

malt I'm off to the first session of my Macmillan course today I'm such an eager beaver, it'll be good to get out of the house for once! I've got my notebook all sorted and just about to get up and showered and even might put some make up on so I look respectable! What are you up to?

Have a lovely day everyone! I shall be back later to share any wisdom from the course if it's likely to be helpful for anyone :)

Cross posted, eek at mini gigs wakefulness, sounds exhausting!

And malt enjoy your freedom :)

The app is back !
Ruby hope your course goes well and the people are lovely. I do think it makes you feel a bit better when you make the effort to shower, do hair and put a bit of make up on

Gigs do you think it's because it's warm and light that little gigs can't settle? Frustrating for you

I've been to sainsburys and need to wrap ds presents he will be 10 on Saturday. Bit crappy timing with my results tomorrow but he was desperate for a sleepover. If I'm told bad news and cant cope with it dh and his parents will be on sleepover duty. Didn't want him not to have a nice birthday just because I'm ill

Wish I could link but just read on bbc news about a trial they've been doing which showed that radiotherapy was just as effective on lymph nodes as surgery

Malt - my dd's 10 on Sunday. I hope he has a lovely day. x

Have read but now need to dash as have oodles of work to do, and it's all very hard for my poor brain to understand . Much love to allxx

Just droppin in to say hi and I am reading all your posts.

Makingdoo it woul dbe lovely if we all had someone like you lloking out for us and our welfare. as for the hair loss, i was very lucky not to have to have chemo or rads but did try on topsy's wig (she lives next door to me) and it was hot and itchy. topsy looked great in buffs and scarves as there are some really nice ones.

gingerroots suggested I come here, I've posted in health. My friend has a tiny baby and has had lumps in one breast since a month or so before the birth (at least that is when she noticed them). She had an ultrasound yesterday (it was thought to be mastitis before then) and there were three clear lumps. She had three chunks taken out to biopsy. I am worried sick now, she has a weeks wait for the results, why do they take so long? Could it be something harmless? They aren't cysts is all I know. What can I do to support her this week (and beyond if the news is bad). What is most helpful? Her baby is her first, he is 4 weeks old, breastfed but from the other breast as he wasn't able to feed properly from the breast with the lumps.

( I got big sunglasses so could perfect what I thought was Maria callas look but probably looked more bet lynch after a night out).

Now this is why I love this thread gigs - you do realise you just made me spit my tea all over my laptop

hellymelly sorry to hear about your friend - did the radiologist say anything when they did the biopsies? It depends on the how "bad" it looks what the risk is. It could be benign lumps. However the only definitive answer is the biopsy, anything else is guessing (educated guess or not!)

My radiologist basically said (in much kinder words) that he wasn't expecting it to be a good result based on what he was seeing, so I was prepared when the news came.

My clinic does the screening on a Mon/Tues and the results on a Friday as they take a minimum of 48hrs in the path lab. A week is a long wait, it might be worth her contacting the breast care nurse to see if there is any way she can get them any sooner.

The waiting is truly awful, just be there for her and listen if she needs to talk. (I would normally add "and distract her if you can" but with a 4wk old she is will be fairly busy already!)