Tamoxigang - 41 and counting

[KurriKurri]

Morning all, new thread, croissants on trolley, and I'll put a brew on.

I still have some hair picture it's just very very thin, seems to be ok without the wig cap anyway

Hope everyone gets some sleep. I haven't slept through the night since dx but think I'm used to it now, normally I wake about 2 and then again about 5. I'm off the sleeping tablets now though

Agree about the medieval feast yuk
Watching don't tell the bride now

I've been told I'll probably have oral chemo.
Dos this mean it'll be less likely I'll lose my hair?

Don't know lbe but I think if its same type that mas is having , hair loss isn't a side effect.

probably won't have hair loss ladybeagle - maybe some thinning.
Medieval pike looked pretty horrid.

I think it can thin lady but you don't lose it completely, someone will know better than me though. When are you starting ?

The pike was vile. Found new bad education on iplayer .

picture - glad you are feeling a bit better today

kitkat - good to hear you are feeling a bit happier with the re-plan

malt - that is why wigs terrify me, the thought of them slipping and falling off I was traumatised as a small child by an uncle with a very bad toupee Yours looks fab though, if I wasn't over half way I might almost rethink seeing how natural yours looks!

lily singing course sounds fab, good luck for chemo tomorrow - my fuzzy brain is getting mixed up - weren't you T-FECing? If so we are swapping in the oppisite direction tomorrow as I'm on no. 4 FEC-Ting :) or was that someone else, my memory really is as hopeless as a goldfish's at the moment

gigs picture malt and anyone else struggling, hope you all sleep well tonight.

Urgh I hate steroids, took them at 2pm, but I'm wired to f**k and not expecting much sleep for the next three days... and then the crash when they stop...(The dose they have put me on for tax is four times the dose I had for FEC and that was bad enough - onc kept it as low as possible on FEC as it affects my glaucoma, but I don't think there's much choice with the tax...)

First appointment on Wenesday 4th.
I've so much going on in my head at the moment,and all I can think of is my last few years being ugly and bald.
I just feel so angry, my original BC was ten years ago and I had my mastectomy and did my 5 years tamoxifen. I thought it was all in the past, but it's now in my lungs and liver, though I'm being treated with all the BC drugs they can throw at me apparently as that's where it originated from as I'm hormonolly receptive.
I thought I was cured, but the bastard has come back.

It's crap isn't it...am thinking you will probably have capecitabine as that is used for secondaries from bc,and so you'll keep your hair.
I was 3 years down the line after treatment when they found mets in both lungs - told to stop tamoxifen as it wasn't working .

I watched Bad Education at lunch time with T - it made us laugh anyway.

lady I'm sorry. I don't have anything wise to say, I wish I did. Cancer is shit. It really is. Treatment will have improved since you were treated last time and I'm sure they will throw everything they can at it. Have you seen amber's posts about supplements that can also help? She really knows her stuff.

Do you know the name of the oral chemo? If it's capecitabine, then MAS and trice are having that. I also had it alongside another drug for my bowel cancer. It doesn't usually cause major hair loss, possibly just some thinning. The main problems I had from it were diarrhoea and very dry skin on my hands and feet, both of which can be helped with drugs/creams etc :)

Goodnight everyone x

Oh Lady, I don't know what to say other than and yes it is crap and unfair and a bastard disease.

Unfortunately we can never be "clear" of it... DHs aunt was similar to you and 14 years clear when they found mets on her lungs, it just ain't fair...

I'm sure amber will be along shortly with her usual reassurance and stats that the majority of the time now mets can be treated more as a chronic illness if the can fine they right drug regime.

I know exactly where you are coming from LadyBeagle, although I only managed five and a bit years. It waited until I thought I was safe and then pounced. Stupid, obscene disease that it is.

The capecitabene I take is very good, not too many side effects once you are in the swing of it and it has really shrunk my tumours quite quickly. My hair has thinned a bit but looks fine. The worst side effect is sore feet.

I feel very sad about my disease but stranglely less terrified. The thing I was most scared of has already happened. Now I just have to try and live as well as I can for as long as I can. And I can feel sorry for myself if I like as it is a truly shitty situation.

Wideawake.com...

I hope everyone else is sleeping

For the Vietnam steroid vets ( my crap joke as I used to feel so wide awake and mad on steroids during chemo that rreminded me of things they allegedly gave soldiers in Vietnam).

Lbe- I know exactly what you mean about ending up bald and ill. That thought went/goes thru my head a lot about chemo and I really hate it. Hair loss just seems to be one more horrible scar this bloody disease leaves on you.

But I do agree with trice that this can be treated and you can live with it ( I don't have bc but soft tissue sarcoma but its in my lungs and bones too).

Mini gig demanding milk so better go.

Lady sorry to hear that seems like it does come back at some stage for most people despite all the treatments

Waved both of mine off to school
One getting the bus for the 1st time. Seems very strange not to be going back to school myself but trying not to dwell on it
Not much planned today, might go and look for a hat and see if I can spend my next voucher, had £50 for my birthday, went last week and couldn't find a single thing I liked!

Think shopping sounds way forward malt.

Big gig not back til next week but finishing her holiday diary. this is my least favourite task as its like pulling teeth (not surprising as she is only 5).

Got good friend coming over with her kids for play date and catch up. Mr gig also back later this morning -most importantly is bringing yum American coffee.

Useful research? OK...fresh out of the box this week...

www.ncbi.nlm.nih.gov/pubmed/23863655 is the latest combination for treating liver metastasis, they reckon. S-1, vinorelbine and medroxyprogesterone are the chemotherapies in question. News just out. "Tumor markers were normalized and liver metastases were shrunk significantly in both cases ... it can be continuously implemented over a long period of time while maintaining high QOL without serious adverse events". An early-days trial...but if standard chemo doesn't work, we now have these sorts of combinations available on some trials.
So...those thinking they're about to cop it...you may not be after all. Talk with thine Oncologist.

The friend of mine given a couple of weeks to live, three years ago, is now on her fourth set of chemo types and still responding nicely to them. Not everyone will find the same thing of course - but they really are getting there. She's still running a small town and gardening and whizzing off to see family.

Meantime, many good oncs are happy for people to take Vitamin D, good multivitamins and minerals, daily dose of aspirin in small quantities lactoferrin, a small handful of blueberries and raspberries fairly regularly, curcumin, omega 3 oils. And the recommendation continues to be to sleep in a room darker than deep space and to have a fab time with friends and family (since it really does boost the body's defences). All of the above does a bit to slow things down, in the tests. None of it is a cure or a replacement for proper chemotherapy treatment, of course.

Vietnam steroid vets yes feeling slightly more deranged than normal today

See I knew amber would pop in with great info as usual :)
While we are talking supplements amber - when are we supposed to start taking them? - after chemo? Not sure when to start quizzing my onc on this. I have also been reading good things about turmeric and green tea - do you know of any recent research on those? (doh, just realised turmeric contains curcumin I think? - which you've already mentioned)

Happy shopping malt

enjoy the coffee gigs

Just killing time here before no 4 this afternoon. Have been awake since 02:30, so feel like I've done a day already!

Malt, most people are cured and it doesn't come back. Let's hope you are one of those.

I take all the supplements, do the exercise, keep my room dark (must give up phone in the evening, it's the worst form of blue light). I want to get dd into secondary school which is another four years, I can't leave Dh to deal with periods! Obviously I really want to live to 80, but my optimism can't stretch that far.

Whilst I lose will to live supervise this diary , I can jot down supplements etc i take from dietician (Jane Clarke so is well respected and works with my Oncologist). It is saving me from doing my impression of a tiger mum with big gig.

Green or especially white tea- evidence that anti oxidants in it are not just good for helping immune system but help chemo be absorbed better.

Turmeric - again this helps immune system as does something to inflammatory Markers (you can tell I am not a scientist as details over my head so need amber ). Rather than supplements, I was told to put teaspoon of turmeric in about half an espresso cup of coconut milk (warm slightly so easier to drink) but with some black pepper in it . Need pepper and coconut oil to absorb turmeric. I was told drink this 4 times a week.

Both of above were ok chemo.

Pro greens - I have seriously expensive one called e3live made from seaweed that is meant to do miraculous things -e3

magnesium -300mg morning and evening-helps with cramps and insomnia as magnesium deficiency proven to cause sleep issues.

Selenium- 200mg good for immunity.

Zinc drops with vitamin c- good for wound healing zinc

1000mg evening primrose and coenzyme q10- good for joint/muscle pain. Similarly cinnamon tea shown to reduce inflammation.

300mg milk thistle to clear liver out 3 per day- not while on chemo but this has been shown to have big benefits.

Solgar gentle iron 25mg- not while on chemo but good way to build iron.

Vitamin b supplement - solgar again.

Udos choice super 8 pro/pre biotic (not on chemo)

Aloe Vera juice- 30/50ml three times a day as soothes digestion (very soothing on chemo and seems to balance the diarhoea or constipation you get on chemo)

Propolis supplement if its cold season or manuka honey 25 plus just eaten raw.

As you can see, I rattle....

Is wine and cake not helpful too gigs
How much has she got to write for this holiday diary ? Can you try and do little and often if she's not keen ? Or bribe with chocolate buttons!

Betsy good luck for number 4, I wonder what colour the tax is I hate the bright red in the fec

Trice I hope you have many more than 4 years

An waiting for cleaners to come before I go shopping, not sure what time they are coming but I don't like sitting here while they clean around me

trice and amber are right - most people don't have cancer returning or metastasising so don't go down that path malt
I also think that cake/wine/choc in moderation are perfectly fine for keeping one feeling like a normal person. I don't take any supplements (though used to before first dx) but generally,apart from cake/wine/choc eat pretty healthily and am embracing exercise by my swimming and onc. has always said that being active is by far the most important thing,above diet. He has written many papers and is top man,so trust his judgement. I am also very much into getting on with things and not thinking I'm ill - but everyone has their ways of dealing with it.
The holiday diary thing just transfers into homework/projects etc as they go up the school gig - even now at 16 am having to cajole the boy into organising his new folders and getting his reading/assignment done - it's bloody hard work. We did do a holiday diary when he was in yr 4 which won him a boxed set of Michael Morpurgo books,so was worth the chivvying.
Righto, must do some pesky dusting,then post office beckons.

I took supplements all the way through chemo, with the blessing of my Onc and team. But I'd always ask a team for their opinion, since different people have different needs and different medical treatments. I also drank a glass or two of wine on a regular basis, which many oncs have been eek about with their clients. But my bc isn't a hormone one so there's not a jot of evidence that giving up wine made any difference for us.

At the moment 9 in 10 women with breast cancer are going on to be cured and die of old age/something quite different. But of course they mostly wander off and we don't hear from them after a few years. So any message board will have more people who are having a trickier time. The odds are still jolly good. And with the genetic stuff happening now, I reckon within 5 years we will have got it to 98% cured or held at 'long term nuisance', which will be a blessing for the 98%. But not a great result for the other 2%

Juts popping on to wave to all and wish everyone a good weekend, and good luck for those having treatments over the next few days. to those having a bad time atm. xx

I'm going AWOL for a few days - I'm involved in an art exhibition with my art club, and I'll be out all day until latish every night until Sunday - stewarding and hob nobbing and throwing a cheese and wine party for local big wigs (Its all part of a town festival and general festivities and goings on, - Morris dancing may feature!) - so probably won't get a chance to post.

But thinking of you all and sending much love - see you on Sunday evening x