**TAMOXIFEN** 4th thread

[MaryAnnSingleton]

here we go !

RWU - I've got 8 half doses of CMF to have. The problem is that my veins are hopeless. Last time they had 3 goes and I almost fainted with it all - just don't feel I could go through that 8 more times.

I do appreciate your input though, as I'd heard they can get infected and that's a worry. I will discuss with the team tomorrow and see what they think. If they think my veins could take the butterfly needle (which is different, I gather from a cannula and smaller,) then it might be OK. I've got myslef into a bit of state about needles and cannulas though, after all four chemo's have involved repeated attempts and even right at the start I had agony with anti-biotics burning a vein and that kanckered/thrombosed one back in January and the chemo efforts have got more painful as they've progressed.

Taking bloods is also getting more difficult - do others have this? At the start there was never any problem but on the last 2 bloods days the lovely phlebotomists, who are usually so good, have had to have a couple of go's.

If Picc line does get infected, what happens then?

Enjoyed your dog story Cakes

Dog's bottoms needing haircuts.. ew..! v.funny though. How's the back Cakes? Hope GP was sensible. Is it any easier?

SR how come they're making you have half sessions? That must make it take an age to get through. Poor you. No wonder your veins are complaining.

My mythical Recliner's just arrived. I'd started to think DH had made it up, but apparently DHL had eaten it. It's so, so gorgeous. Sleekly silver and achingly comfy. I reckon they should dole them out on the NHS. Free prescriptions, wigs and recliners. Might start a petition. Am sure Cleggeron can find the money from somewhere. Now all I need is the sun..

ooh recliner !!
hope all went well with GP Cakes...
I can remember having to dab my cat's bottom when he was housebound with a cone thing round his nexk and couldn't clean himself up - I felt so sad for him- the indignity.
Those white dogs (West highland terriers and such like) that get orangey yellowy fur around their nether regions - yuck.

SR, picc line is different from Hickman and preferable as less invasive iyswim.

Hi all at the dog story Cakes - good thinking to delegate the rear end to DH!

SR - I think a discussion about it all with the team is definitely the right way to go, to see if they can come up with something. I found the problem is the more they have to poke about (have rubbish veins too) the tenser you get, the worse it gets etc. All very well them saying relax, thats pretty difficult under the circumstances! My blood taking vein has pretty much disappeared now. I have had it taken from my foot - but I don't recommend that[owwwwwwwww].

I got up this morning to find one of the lads had done loads of ironing after I went to bed I think it was DS, because I see he has also made himself a pasta salad to take for his lunch today. So thats one less job. We are all rather slatternly laid back about tidiness, but I'm going to have a blitz today so we can still actually move around

Dog has just dragged her bowl across the kitchen and pushed it through the lounge door, I think she may be peckish

what a good boy KK

Thanks KK and RWU - yes I think a Picc line is what is being considered. Totally agree KK re tension etc.

Smee, I had full normal 4 doses of Epirubicin but I gather its fairly standard, tho not universal to give the CMF in half doses plus 14 days of tablets. Not sure why but as I gather the average reaction is to feel rather off on quite a lot of days in the cycle, it would make you feel even worse if you had full dose. Some places do give full dose tho.

By the way Smee I was thinking about what I find helpful in chemo but can't remember if I posted this before. For me - drinking loads of water the day before, and on the day, getting out for a daily walk whenever I can, which is normally from about day 3 onwards, even if short walk. The fresh air helps. Resting/sleeping as body demands. Plus, 4 smaller meals rather than 3 big ones, wholemeal rice and pasta and porridge seem good at not causing nausea or heartburn, lots of fresh fruit and veg, esp pineapple and strawberries. To drink when you go off tea/coffee I've liked lucozade, ginger beer, cranberry drinks and sparkling water. Lots of DVDs for the off days. Good books and visitors for the better days! O yes, and All-Bran!
When do you start or have you started? Sorry - forgetful!

Ooh smee's recliner sounds great. Bit [jealous] now.

SR - yes, I think the veins for the bloods getting crappy is par for the course. It's a git. And very hard NOT to get stressed. Blood from the foot sounds extremely sore.

Hope KK's dog is fed soon - I'm still on a diet so still ravenous,, I know how the poor wee thing feels. I could take a bite out of our fax machine.

Ah that makes sense SR. Does that mean you're on a three week cycle still though. If so it takes double the time to get through??

• thanks for all tips on chemo. Really nice of you to remember me. I've got mad work deadlines this week, so will make a shopping list for next as I have a week to go; start Fri 4th. 'eck..

While I think about it though, can I do a quick straw poll? We have a family gathering the day after my first chemo. Been planned for an age and involves travelling in car, meal, staying away for a night, etc. (What wonderful timing is that?!). So based on your experiences, is there not a hope in hell's chance/ or possibly a chance I might get there. I know everyone's different, but if I'm lucky enough not to feel sick, am thinking the steroids might carry me through. Or is that me in deluded optimism mode again..

Hard to say smee. I was actually much better than I thought I would be, although I have to say I don't think I would have fancied all that. it would be a shame to miss it altogether though: don't want to develop a siege mentality. I'd say have an open mind, go if possible, but make sure you get an early night.

Sorry not to be more specific. And thanks for the enquiry about my back. Gp was pretty much as you predicted. gave me The Back Book which just tells me to be positive and manage my own recovery (well, er, that's why I came and asked for some exercises). But he has given me a letter so I can self-refer for physio in a couple of weeks if no better.

I am going to self refer even if it is feeling better - I have noticed I stand like a duck with my bum stuck out. That can't be right

Thanks Cake. Hard to know what to do really. Suppose I'll just have to see what the delights of chemo does to me.

Am liking the duck posture. Do you waddle when you walk?

Glad you've got the chance for physio Cakes - hopefully that will help. Hope its not too painful today.
Dog tends to get hungry because she's on steroids for a skin problem - she gets a few dog biscuits in the mornings, but I have to watch or she'd be completely barrel shaped!

Smee - I agree with Cakes, its probably a case of play it by ear. I used to have chemo on a tuesday p.m. and started to feel yuk by about the thursday IIRC. But everyone is different and the first one will give you a few pointers to how you may react. So I'd say don't put your life on hold and miss things you enjoy, but let everyone know it will be a case of 'I'll see how I feel'. In all honesty I don't think I would have travelled and stayed away at that point - but that is just me. (I may very well be an old wuss)

DS revealed he was the mystery ironing elf

God a ds who irons. I was right. talented indeed

Yeah, really just wait and see. And if you do feel OK and go, don't overdo it, as it may be the steroids seeing you through, and there may be a price to pay the following day. You'll find you follow a pattern - but until you know what that is going to be, it is impossible to predict. My top tips in preparation - get in the pineapple and ginger supplies (v good for nausea), and drink lots of water in the 2 or 3 days beforehand. And also after. Get the hydration right whatever you do.

Do I waddle like a duck? I am trying to work that out! Apparently it is symptomatic of my back problem, so I am trying to watch myself to see if I do. I'll report back in a day or so...

Wow, I need an ironing elf! How utterly fab. Would your son tolerate an apprentice Kurri? DS laid the table this morning for breakfast, but used every single piece of cutlery we own. There wasn't any room for the bowls..

Hmmm, thanks for advice. I will see what fate awaits then. Kurri you're right it's not ideal. Thing is it was a sod to get everyone to agree the date, and I organised it. Can't say I want to go at all now, but I really have to if I can. Suppose I've got an outstandingly good excuse if I don't get there!

Cakes I will start drinking lots from Tuesday next week then. I've put a big note to remind myself. I seem to remember with morning sickness apricots and almonds worked for me. I know this is different, but might stock up on those too.

Actually they reckon there is quite a link between your response to chemo and morning sickness. If you were a sicky pregnant person, you may well be a sicky chemo user - and vice versa.

I'm not sure how proven that is, but my BC nurse def mentioned it. So if the apricots and almonds worked then, DEFINITELY get them again! You'll be fine though, really. It's just that a bit of preparation can really make a difference to how you feel.

Oh and constipation (sorry).

Apricots definitely excellent in that respect.

I'd heard that one too cakes. Deep joy.. Might talk to the Oncologist about it. Have to go meet her again tomorrow to sign final consent.

Def speak to her. Only lasts as long as the steroids each time (so a few days) and can be variable, but it is useful to have some assistance to hand. And fruit and lots of water really really help. All will be well.

Hi Smee, like the others I think you'll have to wait and see. My experience on my first two chemo's of Epirubicin was that about 2-4 hours after chemo I felt myself going quite suddenly downhill towards what is like a bad hang-over, so at that point I go to bed and then tend not to get up till the following afternoon. Have to say that I do not feel sociable for the couple of days.

With my last two, the going downhill has started and then I have also been violebtly sick - but only once. Then as before!!

So yes you have the mother of all excuses if required and everyone would have to understand! Your reaction will be individual to you, in any case. Everyone is different, as they say, and its true. Good luck.

Re my CMF, I have not toally understood the cycle yet, but its an injection on days 1 and 8, 14 days of tablets from day 1 but I'm not sure whether I start again on day 21 or day 28!! Will find out next week. As soon as I know I'll mark it up on my calendar so that I can start ticking them off.

Wish I could stop eating. Will have to go for a walk to burn off a few calories (a Bounty, a flapjack and a Go Ahead bar in fact....)

Thanks Cakes, am sure all will be well, though let's face it it's never going to be lovely!

SR, yuk. That doesn't sound good. Have read about the hangover feeling before. Can you take pain killers to ease it? My Onc made a big deal out of not taking anything, which must be a total mare if you've got the hangover side effects.

I still don't get your CMF cycle. Is it a 28 day cycle and you're having 8 of them?? or is it that you have two lots in each 28 day cycle so that's 4 cycles of 28 days each? And darn it, for now you've made me want a Bounty..

ahh,Bounty !.....am dreadful about desperately wanting something if it's mentioned....my new passion are those Galaxy Counters -yum.
So sorry that I can't bring anything to the chemo discussions - one day it'll be over for all of you xx
Am getting v stressed about the Strawberry tea - am fretting about tombola - baking -everything !
A very lovely shop in a nearby village which sells beautiful homewares and trinkets has given me a very generous gift of a pewter wine pourer thing - (can't think what they are called - you put the wine bottle in,sort of tipped over and use it to pour the wine in a sophisticated manner) Am going to buy a decent bottle and we'll do a sealed bid thing for it..dh suggested it as it's an expensive prize.

Ooh nice prize! I don't know what they are called either, I don't really do sophisticated.

We bought quite a nice bottle of Cava yesterday to take to school today as a donation for a tombola prize. Afraid we drank it last night, so had to go out early doors this morning to replace it

Smee - I was told it was OK to take painkillers for side effects of chemo. I didn't really need to though - guess I was pretty lucky.

Hi all, MaryAnn kindly directed me here for some chemo company. I had wide excision of 6mm breast lump on April 2nd, high grade malignancy and receptors positive, and started chemo with FEC on May 11, first of 6 3-weekly treatments. Really had no problems first 2 wks, appetite a bit down for few days, well warned re constipation to pre-empt that (it's the zofran not steroids that do it), and bit tired but nothin v unusual. But I agree key is prob not to expect much from yourself, Smee, as everyone is different, and if feel able to socialise that's a bonus. Unfair on yourself to manage it differently.
Was also well warned about depressing inexorable hair loss in week 3 and so it has come to pass. I just hate this, and if lived on own with no dh or dss, would certainly have whacked it off few days ago. But I think dh prefers me with hair of actively moulting 100 yr old than bald so not keen for me to rush into it.. Also ds in big GCSE week tho think he is more cool about bald mum than his dad is.

Hi cupcaked, there's a lot of us about, isn't there? Sorry you are one of them.

The hair loss is indeed completely depressing: I went for the crop as soon as it started to fall, seeing it dropping out all over the place is just nasty. But now, eight months on from the end of chemo, I have quite a lot of hair, all of it exactly the same as before (which is a bit of a downer in my case as I was coveting the thought of a whole new me [ grin] )so it is important to keep in mind that it is a very temporary (although crap) state of affairs.

Good to hear you haven't been too bad so far. I think this is the best time of year to do it, if it has to be done, at least the head doens't get too cold, and it is easier tog et out and about for some fresh air and R&R.

Your treatment regime (6 FEC) is the same as mine was. Your lump sounds very small: bet you won't even be able to tell you have had anything done. Good for you!