**Tamoxigang heading towards hearts and valentines - thread 47**

[BetsyBoop]

roses are red
violets are blue
sugar is sweet
but cakes are better

Happy Valentines everyone!
Our tradition is cards on the front door mat, unsigned, naturally. Although since we don't have a letter box and our front door isn't on the street I think it's pretty obvious where the cards and choccies come from!
So glad you're home really and hope pickle gets some valentines cheer from the nurses

malt having rads every day sounds like a right bind. Another joy to look forward to.

I love singing, but nobody likes to listen to me

Happy Valentines Day All!

I have to say, I always thought it a bit weird to include kids in Valentine's Day celebrations - then I had my own! My little man loves receiving cards, usually because they invite him to a party, so he has a card and some heart shaped chocolates. He will be so chuffed.

Well done Really on escaping! Hope you are feeling alot better and that the SE's of the Tax are starting to wear off.

Malt - Well done on getting through your first week of rads - you must be at least a quarter of the way through now!

Welcome to MildMay, my Consultant told me that about 50% of women with BC will also have it in there lymph nodes, so it is pretty common. Lots of us here, including myself, have it/have had it there.

Harriet - You mentioned Guys the other day - are you having all your treatment there? I might be going there for rads, so will value your opinion on the place.

I hope my moaning is not putting you all off rads ! The actual treatment is fine you just lie there it's just the fact that it's every day and getting there and back, parking etc. But yes after today will be a quarter of the way through and I have next Tuesday off as they're servicing the machine !

Yay to Malt, for being a quarter of the way through.

I have just realised that I only have one month to go till my last chemo, let the count down begin!

yay to maltz. it does sound dull though. I am now in single figure chemos!

One month to go, tiny, that is really not long at all. Well done you! Still five months for me but it's underway, thank goodness. And malt, you are zipping through those rads....

Are you feeling ok pickle?

Ooo choc! Handy!
For those of a technical nature, the Lancet has just produced www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62422-8/fulltext?elsca1=ETOC-LANCET&elsca2=email&elsca3=E24A35F which is the most mind-boggling thing to read. I'm going to have a go at explaining this. Feel free to totally ignore the explanation if it makes you go cross-eyed. I'm not a statistician so if there are some out there who think this explanation is wrong, do say.

But...in basic terms, some people get chemo before surgery. (Neoadjuvant chemotherapy)

That's so the team can see if the chemo shrinks the lumps and gets rid of it from lymph nodes etc.

If it goes completely, it's called a "pathological complete response" (pCR). This is good.

How good? This study looked at 12000 people. But what follows is all about statistics, not actual real people.
They found that if you took a random 100 people who we guess were ALREADY in the 'unlucky group who are going to have an oops within five years judging from their results' ...any who then got a pCR (no cancer at all after chemotherapy) only had a 44% chance of an 'oops' within five years. Hazard Ratio 0.44. They would have had a 100% chance of an oops before. So....out of the 100 of them, 66 who were predicted to have it come back are still alive and well.

They found two groups did really well, though; people with Triple Negative and people with ER- HER+ who had Herceptin.

If you take 100 otherwise definitely-going-to-be-unlucky people with Triple Negative, only 24 of the pCR people will have an 'oops'. So out of the 100 of them, 76 are now still fine when they were meant to be definitely back to having cancer again.

If you take 100 otherwise going-to-be-unlucky people with ER- HER2+ and Herceptin, only 15 of the pCR people will have an oops. So 85 of these 'certain to get the cancer again' people out of the 100 haven't had the cancer return.

Remember, this is only looking at the people who were already in the 'unlucky group'. Most people are in the luckier group and were already going to have no cancer returning in the five years.

So having a pCR is very nifty, and especially niftier for anyone with Triple Negative or ER- HER2+ Herceptin.

I think.

Amber, I'm not going to read the whole thing as I personalise the data and get too emotional, so really grateful to you summarising this. Can you clarify whether this is a comparison between neoadjuvant and adjuvant therapy?

It was just looking at pCR, so no, I don't think it is.

Ok. Thanks so much, amber. Don't think I would cope well with hearing that I'd just had treatment the wrong way round! So it looks like it's saying that neoadjuvant therapy can be very successful through achieving a complete pCR in some people. Encouraging stuff. I see the Lancet through work, but not at work nowadays....

Amber - v interesting, I'm having neo-adj and have TNBC. Reassuring.

We already know that chemo can be useful for a good number people either before or afterwards.

Some people won't get any advantage at all from having chemo.
We also know that if people have it before surgery and it has some effect on the lumps, that's also good. Not as amazingly good as if it makes them s*d off altogether. But still good. If chemo does nothing at all, that's the sort where the teams have to think again and improve the odds some other way.

Hi Tiny, yes Guy's is my local hospital and I think my treatment's all been pretty good there. All the treatment that really mattered - my only moan was how I was thrown out after my lumpectomy barely in a state to be thrown out - they're a busy hospital so they wouldnt' keep me in unless they had to. But in retrospect, I'm sure it was better for me to be in my own bed and recovery has been great.
The BCNs are completely lovely and respond quickly to phone calls. And a friend of mine who works at Guy's in a different area said it's centre of excellence and she'd happily be treated there. It's busy. My first appointment I was one of 50 women with dodgy looking lumps going in for the one stop clinic. So this means you can have to wait for appointments - often 45mins to an hour. Not sure if that's normal, elsewhere, it pretty much is in London. But I feel confident with my consultant - he's very reactive to my opinion on things and says they lead the way with treatments that the rest of the south east follow - so I'd say you'll be in good hands. PM me if you want any practical help (where to eat/how to get around) I live 10 minutes away so know the area well. Well done on 1 more month!

Glad to see that really has escaped. I'm ok but a bit worn out with comings and goings of nurses etc. Very very anaemic so waiting for blood transfusion. I'm on my 6th lot of chemo (17 to go) and feel ok.

Now have my own duvet and pillow from home and sleeping tablet meant I got a good night's sleep. Horror nurse of first night wasn't there last night and instead I had two lovely nurses, one from SA and one from Zim so lots of discussion about lovely places to visit.

Discovered today that I'm the only one here having inpatient chemo, which is a surprise but means I get priority care from the trained chemo nurses.

Thanks Amber, another one having neo-adj for Triple Neg. It is reassuring that the report backs up the treatment plan my Consultant and Oncologist decided upon for me.

The time goes quicker than you think Wren, you will be at the end before you know it.

That's good to know Harriet, I feel reassured that you rate the hospital and the treatment you are having. I will probably take you up on your offer of practical help, although I won't be having rads till late spring/early summer.

Pickle - Glad you are comfortable, being well looked after and are not suffering too many SE's.

thank you all for such a warm welcome.Have to wait til thursday for results and to see consultant.Its such a long time its hard not to worry about what is to come as my knowledge was zero three weeks ago and i have such alot to learn.No plan as yet.

mildmay the waiting for results is the worst thing I hope you can plan a few nice things this week to make it easier, do you have children to distract you too ?

Pickle glad you're a bit more comfortable and have had nice nurses

5th rads done and had my first wait of the week, 15 mins so I can't complain!
Hope everyone has a good weekend must be wine o clock soon :)

Waiting is the worst bit mildmay. Hopefully Thursday will be here before you know it.

Am having a blood transfusion. Can't say I'm impressed that it took 7. 5 hours between blood test and getting blood to start transfusion. Means I have to wait to have second unit tomorrow and first unit won't finish until about 9.30 as they'll have to interrupt it to do my next chemo.

Today is one of the days I have 3 chemos. I have two anti emetic drips per day, antiviral meds, anti fungal meds, something for my stomach lining, a couple of other pills that I can't remember what they're for,an anti clotting injection plus two or three doses of chemo. It's probably a good job visitors are discouraged as there's not much time to see them!

Just had a new nurse do my obs and she didn't bother to wear gown etc. I asked her where her gown was and she asked if was neutropenic. There is a huge sign on the door saying what precautions must be taken before coming in my room. She said she was too busy and tried to carry on so I had to tell her to go out and put gown and gloves on. She did and then came back and said that she is new. I've told her that I don't want her dealing with my care. It's not rocket science that the chemo regime I'm on puts me at huge risk of infection. Sorry, I'm a bit cross!

pickle, it sounds as though you are having a full on time today, with an impressive number of procedures and events happening. And what a lousy bit of nursing. How can it ever be ok to say you are 'too busy' to put the proper gear on? Hats off to you for being assertive in the right way, and particularly when you are vulnerable and at the disadvantage of being hooked up to so much stuff. I'm a bit of a wuss when it comes to things like that, so always super impressed when others get it right!

Morning all
Pickle that is seriously bad I'm glad you called her up on it
Hope everyone's ok, slight hangover here but otherwise fine