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***Tamoxifen 32***

(990 Posts)

step this way dear ones...the trolley will be here in a sec...

grin @ sometimes !

topsyturner Wed 06-Feb-13 20:45:57

Evening All

Wednesday Wine anyone ?
V decadent , but I just fancied a glass

AtoZ I am gobsmacked !
Does your hospital have a PALS association ?
I think it's time to make your complaint official .

Going out tomorrow with HND
We shall be Ladies What Lunch
And we are also squeezing in a visit to the wool shop . I am running out , and I am making scarves to go with my crochet hat collection .

Glad to hear this round of chemo is going better for you Mas

Anyone heard from Gracie ?

How are you Amber ?
Slowed down any yet ?

Any other apts this week ?

AtoZandbackagain Wed 06-Feb-13 23:11:34

Hi

Bit too queasy to post much at the mo <sorry>

Good luck for tomorrow Pen. Surgeon came to the ward to give me my results - I didn't even know that they performed these sorts of tests so was quite surprised to be told the detail blush <very green beginner at all this with a lot to learn>

You'll be fine.

Take care everyone.

pen results today ? lots of good luck...
Sorry about queasiness AtoZ hope it eases soon
Yes, this chemo round has been so much better - apart from the faff of remembering to take the things twice a day it's been a breeze- am very lucky I know.
Think that amber's ds is having an eye op today - so lots of good vibes to him

topsyturner Thu 07-Feb-13 08:33:24

Lots of luck to Mr Amber for today

topsyturner Thu 07-Feb-13 08:37:06

And lots of luck and hand holding to Pen for your results .

Hope you are feeling a little better today AtoZ .
I would say that my Oncs always said if I was feeling sick on chemo , then they weren't doing their job properly .
You should phone and ask them to either change your anti sickness meds or increase them .

I have a surplus of cinnamon raisin bagels on offer this morning .
Who wants coffee ?

amberlight Thu 07-Feb-13 08:52:20

Aye, FineLad is having his second eye operation today (crosslinking for keratoconus). I'm not sure how I am. Two days off work so not much rushing about, but I'm not my cheery self at the moment. Dreading having to spend hours inside the local hospital again - just brings back too many memories. Hey ho.
brew all round I think.

amberlight Thu 07-Feb-13 08:52:37

and yes please to a cinnamon bagel

AshokanFarewell Thu 07-Feb-13 11:02:10

Hello, I did a search to see if there was a support thread for people having chemo and saw other posts pointing to this thread, is it just for breast cancer? I'm having chemo for bowel cancer smile

KurriKurri Thu 07-Feb-13 11:12:41

Hi there Ashokan - No we are not just for breast cancer - you are very welcome, - lots of us on here have had or are currently having chemo - so ask anything you like and someone will probably be able to help.

Sorry you find yourself here though - it's the club no one wants to join! How are you getting on with your treatment? - have you had surgery too?

Anyway - jump in, park yourself on the sofa and ask anything you like, we always have virtual tea and cake on the go smile Oh and cinnamon bagels today I see - yes please topsy.

amber - loads of luck to FineLad for his op - you are bound to feel worried, hospitals do that to a person! - how long does he have to stay in hospital?

Loads of luck to Pen - will be thinking of you XX

AtoZ - hope you feel less queasy soon, - it's horrible I know <hugs>

topsy and HND -enjoy your lunch, eat a large pudding on behalf of those of us who have to diet grin

smee Thu 07-Feb-13 11:22:53

shock AtoZ. Definitely make a complaint. So many of us on here have had only good experiences of cancer care on NHS, that it just shows how awful yours has been all the more. Hope you're feeling less sick now. I got taken back in to have anti-sickness drugs pumped into me- worked, so worth pushing for xx

Pen, am thinking of you too. Hope no surprises. I know I felt far, far more able to cope with it all once I felt I knew it all, so hope you will too xx

Waving hello to Ashokan. Of course you're welcome. Where are you in your chemo? Hope not too far to go.

Amber hope Op goes okay. Totally get what you mean about going back to hospital. You take care now. Come back to let us distract you. smile

Will try and catch up, but brew on for all those who want one. smile

AshokanFarewell Thu 07-Feb-13 11:41:08

Hello KurriKurri and smee, thank you for the warm welcome.

I had my colon removed a couple of month ago and they got all the cancer out with the surgery so the chemo is just to be on the safe side. I'm having the XELOX regime which is also used for breast cancer apparently. I had my first infusion last week and then started capecitabine tablets. The tablets are meant to be for two weeks but I was told to stop yesterday as the side effects were too severe. This was my first cycle of eight. I am a bit frustrated to have had to stop so early on, but it does mean I should be feeling well for my birthday at the weekend smile hopefully the next cycle will be more successful!

I haven't managed to read the whole thread but I hope everyone is doing well today smile it's lovely to have found somewhere where people can understand the treatment. I don't have any children, I'm only 21, but I came on Mumsnet a couple months ago when I was having my eggs harvested and frozen before the chemo. None of my friends have been through anything similar and they are all off at uni or busy in their first jobs etc. so I don't really have anyone to talk to about it all!

smee Thu 07-Feb-13 11:56:09

Ashokan you're so young! Seems bloody unfair to have cancer at any age, but at 21. shock still, you've done brilliantly to get diagnosed and to find it operable. I know a lot of us have has to have chemo dosage reduced due to sever side effects - horrid and frustrating but v common. Take heart though, as my Onc said the extreme reaction showed the drugs were having an effect, which let's face it is the whole point! Natter on here as much as you want to. We all get how scary cancer is. How boring it is too. smile

amberlight Thu 07-Feb-13 11:57:03

At the hospital with dd now. Hi Ashok! Had loads of chemo. Not fun but it works well. Cuppa?

AshokanFarewell Thu 07-Feb-13 12:14:32

Yes it is rather boring isn't it! And scary too. I've been quite head-in-the-sand about it all. I don't know much about the cancer and the doctors have been quite good at not telling me anything about it. I feel like I need to stay positive and knowing more won't help me at the moment. There are a lot of unknowns too, so I'd rather wait until all my questions can be answered rather than having half the information. As well as the tumour I had a lot of polyps in my colon so they think I have a genetic condition. I'm seeing a genetic specialist about that soon.

What I really fancy is some cold milk straight from the fridge smile I'm not allowed cold drinks and I'm struggling as I hate hot drinks and don't find them refreshing. It's hard to stay hydrated!

That's a very positive way of looking at the side effects and has really cheered me up, thank you smee.

amberlight I hope your dd is okay.

Hello Ashokan - welcome- am also shocked at one so young is having to go through this (horrid for anyone but so unfair particularly for a young woman) I am on capecitabine for metastatic bc - think this is cycle 6 - I had my doseage stopped and reduced due to horrid side effects (swollen red hands/peeling feet) - now on 25% less (18 tablets a day of the small ones) Am sure they'll get the balance right for you - it's trial and error really.
Lots of good vibes to ds amber - sending you some virtual chocolate cookies

Copthallresident Thu 07-Feb-13 12:28:23

Hi all smile

Ashokan Have experience of Bowel Cancer in someone close. Glad they have got it all in time, the surgery is the most effective part of the treatment. Don't worry about the change to the treatment, the doseages are very crude, based on a rough calculation of your mass, but every body is different, and bad side effects mean the dose was too much. My first dose of chemo (for breast cancer) wiped out my white blood cells completely and my doseage was reduced at every treatment, and treatments delayed but I am still here 11 years later so it doesn't mean it didn't work. It does mean any Cancer cells got blasted too! Sorry you have it so young, I can well understand how difficult it is when everyone is getting on with the possibilities in life and you have to get this horrible thing behind you first. Do they not have a young people's support group at the hospital? I understood Bowel Cancer in very young people is often genetic? My friend had the genetic type and was advised that 40 was very old to have developed it, it usually hits much younger.

pen Hope it was as good a session with the surgeon as it could be, and you are reassured about things.

AtoZ It is truly terrible, from the crap administration to the lack of care for you physically and mentally, certainly at odds with my experience as well. You should complain formally and have a very strong discussions with whoever's ear you can get. I hope the sickness improves. So was this 3 of 4?

Hope it is going well for everyone else today? Lovely sunny morning here

Copthallresident Thu 07-Feb-13 12:36:49

MAS Glad the new dose is proving kind.

and Ashokan I posted before I saw your post. Yes, friend hadn't realised that there was actually a strong genetic history as her mother had died at 40 of Cancer but it was the 1970s and the emphasis had been on the Cancer that had killed her which must have been a secondary Cancer in her stomach. No one had discussed the other symptoms. She knew her Grandmother had died of it but she had been in her 80s. I hope you get some answers soon. Her son has already had a couple of polyps removed, one when he was 10 and he is just 18 now. However you know that they have removed it and the chemo is just insurance and that is good. Catching it in time is the important thing.

KurriKurri Thu 07-Feb-13 12:40:06

Bless you Ashokan - you are so young, darling, to go through this - cancer is a total indiscriminate bastard. It must be hard to deal with something that your friends will obviously have very little experience of. I wonder if there are any young women's groups around you - there often are for breast cancer, perhaps there are wider reaching groups too, - it can really help to talk with other people going through it, and young women will be dealing with all the considerations you have regarding fertility etc.

I think you are wise to just know what you want to atm, - I felt like that too (I had breast cancer) it all gets a bit information overload otherwise. Its annoying when they have to cut down or limit a treatment - but very very common I think - I know loads of us on this thread have had our doses halved, or stopped etc. but Smee is absolutely right - if you are feeling lousy - it's working grin

Good luck with your treatment, and stick around - you can explain technology and 'young people speak' to some of us old fogies grin

PenisColada Thu 07-Feb-13 12:45:16

Welcome ashoken I have thyroid cancer and the ladies here have been so great and welcoming. Even though the types of cancer are different a lot of what we experience is the same.

I am just off to the hospital. Will report back later .

Gigondas Thu 07-Feb-13 13:01:47

Good luck pen. Amber hope that ds ok with op and you are getting plenty of tea.

Ashko welcome but sorry you are here. I am a non bc person but have done chemo (have soft tissue sarcoma).

And agree with smee that chemo side effect are a good sign.

Have you asked your hospital if there is a specialist youth team? I say that as I know there is one at my hospital as they specialise in certain cancer that are all too common in people your age so know how tough it is and alienating.

But stick around as you can educate us and eat lots of virtual cake.

I am also of the need to know base of cancer smile.

AshokanFarewell Thu 07-Feb-13 13:41:43

I have a social worker from CLIC Sargent and she mentioned meet ups for young people locally but they don't happen very often I don't think. They are also for teenagers and up to 25 year olds, but I don't think many over 18 go so I feel like I'd probably be a bit too old. If they ever get round to arranging one I will try and go along though. Apart from that I don't think there is much locally. I'm too tired to do anything at the moment anyway. I'm just lying in bed!

Sorry to hear so many have this horrible disease sad

Good luck at the hospital PenisColada.

Gigondas Thu 07-Feb-13 15:00:56

I am lieing in bed meant to be working. Have you got a chemo obsession yet? I think smee learned to play the piano, I was obsessed with cooking and watching montalbano.

Sometimesiwonder Thu 07-Feb-13 15:02:47

Just wanted to say good luck to Pen, and hello to Ashokan. smile

You are very, very young Ashokan, it must be tough. Chemo is a hard ride, but do-able, so stay with us for a moan and a laugh. And cake. And wine (you can have mine, I'm off it for now)

Gigondas Thu 07-Feb-13 15:04:38

Off wine - why ?

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