Anyone else with liver secondaries?

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Sorry Cathy - just worked my way backwards up the thread so to speak. I’m doing well - just can’t laugh, yawn, cough, cry or hiccup! Or bend…or reach… Brain is very active though and I’m already getting fed up with not being able to do things. Liver (and rest of my body) must be in not too bad a shape given how quickly I’ve got over the anaesthetic etc which is really encouraging.

Emotionally I obviously have my moments but I’ve got some wonderful support locally and through you lovely ladies. Just need to know what the onc is planning. trying to work out how long to give him to contact me before I decide to ring him. Thurs is his “private” clinic day so might wait till then.

Saw your post on the photo thread as well. Angee was on the live chat tonight which I joined in for the first time for months until I lost the wireless connection. I’m happy to have a small gathering here if people are able to travel as it would be much less tiring than her going around everyone. What do you think?

Love Kay xx

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Just a quickie

Thought we’d scared you both off!!

Please come back again next week - and I’ll try to be a bit more serious!!!

Love Anne xx

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Only ever a bit more serious Anne - laughter and fun is what keeps me going! Really enjoyed tonight even with my cushion clutched to my side!

See you next week - and good luck tomorrow.

Kay x

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Thanks Kay - will let you know

Take care

Love Anne xx (aka Scarey Sixpen!)

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Hi Everyone

Hope everyone else is well and doing Ok. Sorry not been too chatty recently, did find Fridays news a bit hard, and think put me on a downer for a while, but hopefully am bouncing back again now slowly. Think it was more seeing how many lesions I had, as my onc led me to believe there were only 2, so got me upset and brain went into overdrive … dunno if you know where i am coming from here, am sure you do.

Anyway, enough of that, am back again, although I also have to admit that I really don’t seem to have the same amount of time to spend on here as I did. Don’t know why really, but must be Jack keeping me busy in the mornings and then out and about with Sophie’s social life!!! Can you believe it, got back from my Herceptin yesterday about 1.30 and she was waiting at the door, ready to go OUT to her friends house. THey had apparently discussed it at preschool - cmon, they are only 4 years old, what is it gonna be like in 10 years time!!! OMG!!!

Well it is my BIG birthday very soon actually, although don’t feel that old have to say, and have got lots arranged. Me and OH off away for the night and his sis and bruv in law, coming down to look after the muppets (are they mad???). We are gonna go to a spa hotel locally but need to find out if OK to have treatments!!! Should be lovely though whatever and 24 hours of freedom!!! Then the following weekend me and 8 mummy mates are all of up London to the theatre, staying overnight. Wanted to see Grease but sold out, so off to see Chicago. Can’t wait for that either and another 24 hours freedom. Yippeee. Then guess what, 2 weeks later, we are off to Florida … what a brilliant March!!!

Sorry for bragging, but so looking forward to it all and need something to keep me smiling.

Hope everyone is doing OK this week. Kay so good to see that you were home on Sunday and I will try to ring you later, going straight out after preschool and home about 3, so might try then depending on the muppets. Hope you are getting better ok though and not overdoing anything. Sounds like the chat room was good fun, I do keep thinking about trying it, but for some reason am scared … maybe will pluck up the courage next week. Probably embarrass myself or something.

So what is happening with you all, feel a little out of touch, as not really read the forums that much, just had a quick flick through now and again … I do apologise. Stupid of me I know, and not been through half as much as Kay and she sounds so much better than me, so need to pull myself together.

Anyway, trying to catch up with everyone this morning while Jack asleep and Sophie at school so will speak later.

Take care all
Love
Dawn
xx

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Hi Dawn

Really good to hear from you again - and do give me a ring later if you are able. I’m still stuck on my settee on the pile of cushions (with a spare one to hand in case anyone makes me laugh - Sixpen and Angee take note!!). Never ever have I spent so much time on-line - my daughter who is “mum-sitting” today had to grab the laptop off me so that she could check her work emails!! - just as you find you have less time. Maybe it is that Jack who must be really becoming a little character now he’s one. Sounds as if SOphie is determined to keep you busy as well - at least she hadn’t invited her friend round to your house for tea!

Please don’t compare yourself to me or to others - we all react and deal with things differently and what might be a huge thing to one of us might not to another. Not that I am saying last week wasn’t huge for me because it was but I hope you’ll understand what I mean. Think the painkillers are now really affecting the few brain cells I had that were not yet completely chemoed! I am doing ok though - just with occasional moments of panic when I wonder what plan the onc will have next. So don’t think you should “pull yourself together” - pamper yourself instead because you deserve it!

Mind you your March sounds wonderful - so many things to look forward to. Make sure everyone takes such good care of you!

Live chat was really good last night. I tried it last year some time and didn’t really find it helpful at all but was very different last night (till I lost the connection). I’m going to try to go on again next week, so it would be great if you were there as well. Gets very confusing at times though with about 3 conversations going at the same time and a short time delay as you type your reply and then the conversation has moved on anyway!!

Hope to speak to you later - if your darlings allow you.

Lots of love - to all

Kay xx

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Hi all,
Not been on much as my OH has got a new job closer to home and is home every night instead of just weekends. So he hogs the computer in the evening and then yesterday it went “blue screen” - not good. Anyway it is working again today and he’s still at work so I thought I’d creep on when he wasn’t looking!
Kay -glad to hear you’re home and keeping busy, will be interesting to hear what your onc has in store for you next.
Dawn- hope you are feeling better after your horrible shock. Sounds like you’ve got lots to look forward to.
I’ve been busy with work, my new unit is coming on very,very slowly and I can only hope we will be ready for Easter!
Been feeling a bit rough this week after only having one period since April last year I’ve just had a very heavy one so much for the zoladex working!!
Anyway off to make tea now, no more beans on toast for me, have to make proper meals!
Take care all,
Allie

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Hi all you Lovelies,
Hope your appointment today went okay Sixpen (I really like that name - don’t want to call you Anne!) and it was just about the oophorectomy, nothing else. Let us know won’t you?
Welcome to Tracy 2424. Glad you’ve got yourself logged on, but sorry you’re in the same boat with us. You’re very welcome in joining our big, ever-expanding thread.
Kay - how’s your son doing? Has your friend had a chance to talk to him yet? Sorry, I can’t remember how old he is- I think he’s about 18. Could your OH have a chat with him? I do hope it all works itself out soon.
Tracy 1964, you sound really up for a meeting. As soon as Kay’s got her strength back, we’ll get Cathy to plot a venue.
Dawn- glad to see you back. It’s no wonder you’ve needed a bit of space since Friday’s news. I always find it so hard to come to terms with any change in circumstances. I guess I feel more secure if I think I know how things stand, and then when they change it rocks evrything again and I feel incredibly vulnerable.
It sounds like you’ll be having a ball in March though! Have a fabulous time.
I’m envious you have things to look forward to - I must plan some more treats. There were loads before Christmas, but now it’s all gone totally quiet (or rather the diary’s got filled up with boring stuff). I recently had a reply from Odyssey (outward bound-type hols for people who’ve had cancer), and I’m booked in in September! I was so excited - really gave me a boost to have something to look forward to. Three days later, my friend announced the date of her 40th birthday girls spa weekend - you guessed it - same weekend as odyssey starts. They were the only two things I had on the horizon and now they clash! Sod’s law.
Allie - it’ll be strange having your man about the house again. I imagine it’ll take some adjustment for you both, as you’ve both had so much freedom to do what you want when you want (like not bothering to cook). Well enjoy having his company, and get him to do all the ‘man jobs’ (taking out the rubbish, filling up the car, dealing with big spiders, etc)!
Sounds like those of you on the live chat had a bit of a blast. I must try it again next time I’m free on a Tuesday.
Well it’s bedtime for me
Take care everyone
Jacquie xx

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Hi All

Just nipped on quickly - I’ll be back later!!!
But, am laughing my head off at Jacksy - with her ‘man jobs’!! And, its ok to call me Sixpen (got that from my 2 cats at the time Sixpence and Penny).

A quick update on my appointment yesterday - it was to say that I am being referred for oophorectomy. They’d had discussions! CT showed 2 fatty lumps in ok boob but I’ve not noticed and they couldnt find them when they had a grope!! So, a mammogram had been arranged for 22 Feb but they decided to do it there and then yesterday!!

Hope that you are all bearing up!! Catch you all later

Sixpen aka Anne xx

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Hi all

So pleased for you Sixpen, that the appointment went ok. Any idea how long you might have to wait for the op? Like Jacquie I love the name Sixpen - much more imaginative than mine! I’ve got 3 completely manic cats.

Sorry you’re feeling a bit rough, Allie - doesn’t seem fair at all to have a period again after all that time. Enjoy having your OH around - get him to do all Jacquie’s “man jobs” and some!

That really is sod’s law Jacquie - can you change your Odyssey weekend? And what would you actually be doing? Sounds really fun (so long as it isn’t TOO physical!) - I hadn’t heard of this at all. Might go and do a search in a minute.

I’ve nothing really to report from my sofa and cushions - except boredom setting in! I thought I’d catch up with some reading but appear to have the attention span of a flea (blame the anaesthetic or maybe the painkillers!). Have my stapels taken out tomorrow and then see the onc next Thurs to hear what he has planned for me.

Hope all are doing ok.

Lots of love Kay xx

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hi all , well just got back from my last taxotere , felt very emmotional today and was in tears again , its scary eh last round . all my results are down again so all sounds promising despite not being able to get this RFA i wanted . my husband and i have decided to go to london and have a face to face with the oncologist over there to find out more facts etc .
My legs are so heavy now i can only walk a short distance so with the tax out the way i hope to see an improvment .
so now its the xeloda , heres hoping here too . i wish i could be more positive but its so hard at times .
jacksy yes i really really really want to meet up when we are all fit again , cant wait ! few wines down the hatch !
Hope you are feeling ok dawn takes a while to sink in eh , i need to know more hence the extra appointment .
well must go cook , not that i will be able to taste it !
love to all Tracy xxxx
oh and hi fellow TracE Y ,would love to meet you too .xx

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hello tracy and everyone else

Hope everyone is keeping well enough at moment,

Kay I hope you are on the mend and your staples are joining up, or melting away, whatever they do! eek - next thursday is valentines day for your appointment. We are having dinner with our vicar from church that day and then the next day off to chemo. Btw I think your idea of a meet up for the pictures was a good idea, I hope that comes off as I thought it was a great idea.

Tracy - are you seeking a second opinion or does your onc over there report to an oncologist in London. Always think it is the best thing to do (even though its going to be hard) to get second opiniion etc, as you cannot have peace of mind without doing these things if they get into your head, I hope that makes sense.

Sixpen- why can’t i think of a more creative name? i should have done that, mabe I can change mine!! Gladt the appointment worked out ok and no bad news etc,

dawn - hope you have great time at spa thing on your birthday.I absolutely love spa treatments, particularly facials. They all have different policies on treatments- but facials are always a good fall back, they can do your nails or reflexology etc. it sounds really good,

allie Jacquie and everyone else - hope you are keeping OK. allie, may be your periods will settle down next month? maybe its like a last try of the system after it took zoladex jab. Jacquie -I am going to look up oddysey when I log off here, cant believe there was a conflict (!) it really is sods law. Are you going to go on your own for the oddysey thing, oris it a family thing? I wouldn’t be shy about asking your friend to change it - because you have this planned, its a pretty good excuse and she could probably move it by a week…its not likeitsschool holidays etc.
love to all

Cathy

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Hi all,
Kay -hope your staples came out ok and you are still taking it easy. Good luck with app on Thursday.
Tracy- I’m sure you’re glad to finish your Taxotere, I’m sure the Zeloda will hold it back somewhat, I’m sure I read that one of the ladies on the board has been on it for 4 years!
Jacquie- that odyssey thing sounds very intriging, typical it co-incides with your other hot date!
Cathy- I hope it is the last blast -I’m going through my store of tampons at a rate of knots, I’ll be really annoyed if I have to buy more!
I’ve got a very quiet weekend planned,OH has taken darling nephew to Edinburgh to watch Hearts play football, so I’m going to catch up on paperwork, do some baking and watch rugby on tv and might venture to allotment as long as it stays dry to plant broad beans.
Jacquie-I’ve managed to coerce the OH to empty bins, do cat litter and he will cook but he draws the line at the spiders, have you ever heard a 6 foot guy scream like a girl? truly embarrassing.
Well better go start my paperwork
Allie

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Hi Tracy 1964 and all the rest of the ladies on board,

Yes Tracy would love to meet you and everyone else i love London trailing the shops down Oxford st.

I did Taxotere for 3 months what a nightmare it was for me, i had the heavy leg syndrome was hospitalized for 7 days for low blood counts but my worst thing with it was the mouth ulcers my tounge shrivelled up completley, the week before xmas 06, bot did i feel sorry for myself.

Then went onto Xelodia what a breeze that was for me it was like popping a paracetomol, i know everybodys different but for me it was really easy just had the hand and foot thing but that was doable. i had 6 sessions and hallelujah the Liver mets shrunk so came off it and stayed on Herceptin that was last May, i had a good run on Herceptin only would have liked longer but never mind.

Now just about to start a clinical trial.

Love to you all hope everyones enjoying the lovely weather we have had today, hope it lasts for half term wk, not that i have little ones mine are 21 and 15 and my eldest will be at work and the youngest stuck on My Space, or MSN.

Tracey x

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Hi All,
Hope you’ve had a nice weekend and enjoyed the sunshine.
Sixpen - thanks for telling us the origin of your name - a nice way to choose. I’m so glad it was the ooporectomy and nothing else they wanted to see you about. Wonder how long you’ll have to wait?
Kay - hope you’re more comfortable without the staples! Is your appt this Thurs or next week? How horrible having to go and find out what dreaded treatment’s coming next. You poor thing. The not knowing’s the worst.
Kay and Cathy - The Odyssey thing is five days of being in the outdoors doing i-know-not-what! That’s all part of it - you have to go alone - they discourage you from going with anyone you know. They don’t tell you what exactly you’ll be doing, but promised a good hot meal and glass of wine in the evening. And we’re not camping! The idea is that it helps rebuild your confidence in your body and your self after cancer treatment. As far as fitness goes you only have to be able to climb stairs and walk a mile - should be okay then. And don’t tell anyone else, but it doesn’t cost anything! it’s a charity.
Cathy, I don’t think my friend can move her birthday weekend (been planning it for 3 years!!) as her sister’s getting married around then too. Bum. Don’t know what to do.
What’s this about a valentines dinner with the vicar?! What sort of church do you go to Cathy? Haven’t told anyone this before, but my husband’s a vicar (people have all kinds of preconceptions so i generally keep it quiet at first).
Tracy - Good for you finishing the taxotere. You’re bound to feel emotional but it all feels topsy-turvy doesn’t it? You think you’d feel happy to be over with it! Sorry your legs are still so bad - will this just wear off now?
Tracey24 - Can you tell me what this hand and foot thing is that people describe on Xeloda? Thanks
Allie - you didn’t mention your allotment before - how exciting. What do you grow? how long have you had it? who does all the work?! (is digging and weeding a man-job?!). I had a tiny bit of a friend’s allotment last spring but got diagnosed before I’d even started on it and then had surgery and chemo, so it never got off the ground.
Well, better go - daughter number 2’s shouting me from the bath - wants me to keep her company.
By the way - have you all seen about the questionnaire? they want people in England with secondaries as well as primaries to report back on their diagnosis and treatment. There’s a thread about it.
Love to you all
Jacquie x

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Hi all

Staples removed and moving much easier - was absolutely whacked Friday pm though after the visit to the hospital. Got severely told off by the nurse for doing too much - evidently I shouldn’t be lifting anything heavier than a half full kettle! Think the book that I’m reading could be heavier than that - never mind the laptop!

Tracey24 - I’d like to hear more about the hand and foot thing as well - I think Xeloda may be what the onc proposes next. Would be good to know a little more about it before I see him on Thurs (this Thurs, Jacquie). It’s encouraging that you found it a “breeze” though. And you’ve obviously now decided to go for the trial? Did you get more details of it?

Hopefully you’ll start feeling better after the Taxotere soon, Tracy. I’ve always found finishing treatment quite scary though as well - what is the plan next? Or is it a case of monitoring and seeing what happens?

The Odyssey thing sounds really good, Jacquie - had a look at their website and am really keen. Just need to have a better idea of how my year is going to go but think I’ll definitely apply. ANd even post op can climb stairs and (at a pinch) could walk a mile.

Right, must go and see if I can book some tickets for my daughter to see the Lord of the RIngs show - it’s her birthday next week.

Take care everyone and enjoy the sunshine - long may it last

Kay xx

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Hi all

Just wanted to share with everyone what a good day it’s been! Bright sunshine, warm enough to be outside in a Tshirt and my shoulders have eventually stopped hurting so I was able to put on my waders and spend a happy afternoon planting things in my pond!
So nice that even in the face of this horrible disease there can be perfect days! Hope that as many as possible of you have had an equally lovely day.

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hello Manon and all

yes its been a lovely day - seen the in laws which went OK, although the seem to be in some sort of denial about my situation, think it would have been lovely to be out planting an allotment or on a pond, sounds great and glad everyone is having nice day in the sunshine.

jacquie- your husbands a vicar! "yes I can see why you did keep that to yourself, there are alot of preconceptions about what you should be like…I can see that…I am long term C of E attend a traditional, mainstream church in the center of london where we were married and where our son was baptised and my parents were also married there! Struggling a bit with the whole religion thing at the moment - if I can be honest…but there you go, Had a good look at odyssey,thinking about it…

Kay - hope you have a good meeting on thursday , let us know how you get on. Why am I not suprised you were told off, your laptop is certainly heavier than half a kettle.

Tracey 24- heavy leg syndrome, now I know what it is called, this seems to have kicked in a bit with chemo number 4. its still manageable but it is definitely there. Can you tell us more about your clinical trial?

love to all

Cathy

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HI All

Hope everyone is Well,

Jacquie + Kay - the hand and foot syndrome how can i describe it, the soles of the feet are very dry and crack and sore on the ball of the foot i lost both my Toe nails and it was the middle of the summer and wore sandals but i got away with some nice plum polish.

Mow the hands were another issue as i love to see nice nails and have had the Acrylics quite a few times, my own nails were awful they all lifted and i lost my thumb nail and they started pussing with a foul smell, this cleared with Antibiotics, and from the knuckles upwards my fingers all tingled very sensitive to hot water and problems when doing the ironing.
That said its doable and looking back now my nails are all fine only my two thumb nails are black but thats from the Taxotere and i just keep nail polish on all the time.

Cathy - dont really know much yet about the trial will now more after the 28th February Clinical Trial nurses could not release any information on my last visit, its a phase 111 trial (there is some info on clinical trials . gov website buy not much)
i think its a chemo from Japan looks promising and its to see if people tolerate this drug better than Xelodia.
I spoke to a girl on another board and she was in the Phase 2 trial over a year ago and she said she didnt have any side effects at all and it also cleared her stomach mets.
I was reading something about this trial drug and apparentley the manufacteur wanted to present the drug for early release but another drug had beat them to it so they have got to wait. (if that makes sense.

Ill keep you posted.

Love Tracey.

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Hi Everyone

Its me, or have you all forgotten me, cos I have been so lax with making any posts this last week. So sorry again I must apologise for my lack of posts recently, can’t explain why, apart from that I just seem to run out of time in the day, when jack sleeping I do ironing and catching up with stuff, then its Sophie’s social life of couse, and the evenings I just end up flaking in front of the tv. Yep, becoming a couch potatoe me thinks!

We didn’t do much today, decided after last week and events with liver man and my 3rd Herceptin, to take this easy if I can. Got Onc appointment on Wednesday, which I don’t think I am looking forward to, as reckon will get “told you so” … but did get letter from Professor (liver specialist) and apparently my liver tumours have responded “spectacularly” to treatment with resolution of a lot of the disease, but there is scattered disease both sides and most segments have got some evidence of residual disease, albeit appearances very subtle" he said. Not sure what that means specifically, but has to be good news, evern though not operable. If anyone can translate this into proper english please do, as a little confused by it. But will see what Onc says wedensday about it, as was also copied in the letter. Should be interesting.

I feel a little out of date with everything, as although I have been reading, I haven’t really been absorbing if you know what I mean. But hope that you are OK, and I have slapt my wrists now and promise to do better in the future … and be more in touch again.

Kay, I know I haven’t rung yet, but promise to do so, just waiting til I am upbeat enough, which i feel I am now, so if I can, will try tomorrow - although it is half term, so depends on sophie being an “angel” (as if) and allowing me time to chat. As soon as I get on the phone she starts on at me, wanting things, or something with the telly, etc etc etc. So makes chatting hard work, but will see if I can time it right.

Allie, hope everything going well with hubby home full time, must be very weird for you, but nice too. And hopefully the mini is going well too. How are you feeling too and what is going on with you.

Everyone else, I hope that you are all doing OK and the last few weeks been kind to you. Again I do apologise and am going to try to be more online again. Looking forward to our next meet as well, and meeting some of the new ladies too if they can make it along. Carry on at this rate will have to hire venues out to fit us all in … LOL.

Anyway, take care everyone and catch up soon.
lots of love
Dawn
xxx