Tamoxifen 28

[Gigondas]

Another shiny thread

Just popping on to send amber huge hugs and positive vibes for today. Thinking of you lots, lovely x x

Will pop back later and catch up properly

Hello Shaky, has your sis lost a lot of weight lately? A friend had inverted nipple after a crash diet and panicked, but the cause was the weight loss apparently. I think they can be caused by infection too.

Amber, thinking of you until you tell us you're back safe and happy. I'm sure you will be.

Gigs, how's the day looking? Here's a cute orange man for you. picturebookillustration.blogspot.co.uk/2007_01_01_archive.html
Apologies, as I haven't a clue how to make links shorter/ more zappy sounding. If you're bored, enlighten me!

MAS, that's curious about the Tamoxifen. Was your original tumour hugely hormone positive, or just on the scale somewhere. I haven't a clue what the science of it all is, what a sod that it hasn't worked for you though. I wonder what they'll try next. Isn't Figgy on Letrazole? Or is that someone else. That's supposed to be good if so.

Talking of Figgy, where is she?? Hope she's just living life to the full, so more than okay.

Ned, are you feeling envigorated by the gym, or just exhausted. Don't do too much now.

Nice to see you pop by, OneinEight. How are you??

Gracie's how's the new day feeling? Hope you're not still feeling flattened, but last time is AMAZING. You have done brilliantly you know.

Waving to everyone else. Coffee on the go for those who want one.

Wheeeee!!!!!!!!!!!!! Mr Consultant, he say I'm OK! And he had cold hands but that's a whole year of still-being-alive. Phew!! The lumpy bit and pain really was just scar tissue.
Hugs all round.

way hey !! fab news gig - excellent and brilliant- you can really celebrate on Saturday !
ned my ER rating was 8/8 - it's all very curious. I'm still shocked that it is a secondary because everything seemed so clear cut,no nodes - on my path. report it says 'no convincing vascular invasion' - so I guess it was sneaky vascular invasion !
Now- what questions should I be asking tomorrow ?
Still no word from pink ?

Yay re amber but boo about cold hands.

Questions:
Next steps?
timing?
Do you want a second opinion (prob only if there are options on treatment eg to wait, type of treatment - for example I could have done the Both at same time option with my two chemo or one after other- as it happened we stuck with just one opinion but did weigh up getting someone from another hospital to check and give an opinion)
What other help can you get or would you want- not so much woo but can I suggest at least nutritionist referral as if you have to have chemo that can be of immense value in managing side effects (weight loss/gain- I haven't had any change due to nutritionist , nausea , fatigue etc).
Also prognosis- now they do I think have to tell you outline but like topsy I don't want to know major detail (even down to quite where my nasties are in detail) but that is purely personal.

Sure others will have better questions and quite a lot of mine were more practical ones that my specialist nurse handles (like asking her if I will be ok to go to George Michael concert when only at end of my low spell).

Lovely orange man smee

MAS...Questions: a) Dear Oncologist, have you seen the trials of 'trojan horse' methods of getting chemotherapy to cancer cells in a way that they can't become immune to its effects. If not, why not, and please can I have a go at such a trial?
b) Cyberknife. Opinions please.

Lactoferrin. Take it. And blueberries. And make that bedroom darker than the very depths of a coal mine at night.

Morning All

Amber that's fab news !
You can really let lose on Saturday

Trying to think of questions for you to ask tomorrow Mas .
Are they going to CT the rest of you ?
Are you suitable for cyber knife ?
What type of chemo and how long a course are they suggesting ?

As I think of more , I will post them .

Hi Shakey
Sorry I'm not much use to you .
But wanted to welcome you anyway

thanks - nutritionist sounds good idea (as long as wine and margaritas are allowed) I quite like plans that I can follow with a definite purpose. I remember my SIL lalaa making huge changes to her diet after dx.
amber our bedroom has cream coloured curtains and a street light just outside so keeping dark is tricky,plus I like to have air rushing in-dh hates that.am sure we can think of something.

No my nutritionist very pro wine, cheese , red meat and chocolate in appropriate place . And I know I bang on about it but think it has done me the world of good.

I know I will struggle with the not being in control if I'm given chemo so I think taking some control will be good and nutrition seems very sensible..

prognosis - hmm, I have been told by a friend who has the same onc. that he is quite direct but very lovely- I sort of know from googling (sorry) -one site was rather blunt saying that lung mets outcome is not very good, but I know that's not necessarily so.

That was my fear so I did following :
Nutrionist
Image consultation so had advice on hair and make up (went to one via onc, plus bobby brown counter were lovely esp on eye lash and eye brow loss- I find am used to new look now and like playing with wigs and scarves .my issue is big gig won't let me go out queen nefertiti style with ear rings and no scarf/wig, mini gig steals my scarves to sleep on and cries if I wear a wig)
Physio- gentle exercise controls fatigue
Side effect chart in first cycle )or beyond- so can report and deal with issues , also work out you good/bad days then plan work,social life etc around that .

My experience is that they are direct which is partly to do with expectation management and partly there are rules on what they can say to patients (ie can't soft pedal). I found first dx horrid (was alone, was a bit of a shock) but after that I made sure dh was there and onc knew I only want broad overview .

I think it is easy to lose sight of the key things which are (to quote are resident guru amber) you are alive and how do you actually feel (you mentioned chest pain/aches so resolving that is your issue). It's a bit of a twist on mindfulness but you focus on that the past (ie your dx) can't be changed and who knows what future brings. You are your own story and stats, anecdotes of others with cancer whoever they are , googling etc won't help predict what happens to you . So I try to separate the "me now" bit from dr law on scans tests etc. and also you have to keep hold of that and speak up to ask for help etc (eg I argued when had infection a few weeks ago, albeit unsuccessfully, that me staying in for anti bio when was well per their charts and heathy made no sense).

wise words gig x

I do think that mindfulness has already put me in a calm frame of mind - I am naughty and haven't meditated for a while though.
Another thought- Should I be offered chemo, would my not having a spleen be a problem ? I am very healthy and well normally- very seldom have an coughs/colds/infections despite being theoretically more prone to them,being spleenless- and seem to recover quickly from anything. I have discomfort in my chest though- I can feel it around my back- BCN wonders if there may be fluid there ?
I can't believe I'm saying all these things.

MAS, change the curtains to be darker. Really seriously. Melatonin boosts cancer growth - very good science on it. Dark bedrooms = slower growth = chemo has excellent chance of whacking it.

Add those to your list of questions. I think spleen may affect what type of chemo you have but not being offered it at all given your general health but That is just me.

That is very interesting amber (we have black out blinds).

And I am struggling to find time to meditate too

Gigs, and your spots are sodding off. It is indeed interesting. are you also taking an aspirin a day and eating plenty of broccoli/cabbage? Again, scientists getting excited about those two in combination, helping boost chemo.

for Amber. When's the party starting?? xx

Wise words from all for you MAS, can't think of any other questions. Spleen question sounds a good one to ask though. Interesting all this (though clearly bloody awful too!). Will have a think and post if I can think of anything sensible, but I think the whole timescale so you can structure life/ what's next is key. I found that ever so important, as it helped me take it one step at a time knowing what was next iyswim. Sounds like you're v.like that too.

Amber, I didn't know that about melatonin. How v.interesting. I have started taking an asprin every day and that's all down to you!

Gig, how's the ward today? Any annoying neighbours.

"Parties should note that I am not a doctor and therefore must make enquiries of their medical team before embarking on any aspirin etc etc blah"


But yes, I get nifty tips from the scientists every day so I pass them along where I can. Still no guarantees, but if it increases the odds, good.

Accepts legal disclaimer and sharpens pencil to note down future tips.

Just found this clip and watched it. Very clear explanation of Melatonin/ cancer prevention. I can feel a bit of blind shopping on the horizon..

Yes a lot of broccoli, cabbage and leafy veg- not on aspirin as on stuff to protect stomach lining but will revert when done .

Also various other supplements