Anyone else with liver secondaries?

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Kay - just wanted to send a cyber hug to wish you well with your treatment.

Dawn - just wanted to send a cyber hug to wish you good luck for tomorrow. When I went for a bone scan last, I was a bit panicky because they phoned me and offered it soooooooooo quickly. But, it was actually an old school friend doing the scan - they’d had a cancellation and she’d look through the notes and saw my name, so I jumped the queue :-o
Also, my onc has the same opinion as yours regarding tumour markers!!

Girls, sorry to be so brief - going to get nagged to go to bed in a min - hubby’s already snoring on the sofa!!! LOL

Good Luck and Best Wishes to All

Anne xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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Hi all

Many thanks for the (cyber) hugs and kind messages - all going well really. No side effects so far and have been at work most of the day, without feeling overtired. Have my appointment now for a hysteroscopy (sp?) a week on Wednesday (because of the bleeding). Ready for the weekend really - last weekend I was such a mess emotionally really, so could do with a bit of relaxing time.

Dawn - hope all went ok this afternoon. I loathe the scans as you know but know it’s best to try not to play the “what if” game. There’s no reason why it shouldn’t show all is the same as it was (or even better). Much easier said than done though. Do you know how quickly the results will come through? Going for the written option sounds a good choice - at least you won’t be leaping out of your skin each time the phone goes, or sitting stressing before going into see the onc. Hope your post arrives early each morning though!

Glad your parents’ visit is nearing its end, Cathy. Have been reading your other thread and clearly you have found it very stressful. Hopefully you can have a bit of a breather once they have gone. My parents are up in the Lake District and I have long intense conversations with my mother in particular when I feel obliged to be very upbeat about everything - but it is only a phone call’s length. They don’t travel now - my father at 82 & with prostate cancer really isn’t fit to drive that distance and they don’t trust the trains! In a way that’s a blessing - though think we do need to go up and see them at half term (in between hysteroscopies!).

Hope everyone has a good weekend planned - doing lots or nothing depending on what you need at the mo!

Kay xx

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Hi girls,
been having a quick read through of your threads. Not much time at the moment for posting but I just wanted to say hi and I’m still thinking about you all, all of the time.
Dawn - if it’s any consolation, my onc said that if my MUGA heart scans were okay the first couple of times, I was unlikely to develop problems later on. He never seems the slightest bit concerned that they might be poor results, so i don’t tend to worry nearly as much as I would have done (still manage to do the ‘what ifs…’ tho).
Kay and Tracy I’m still cross about your recent results. Bl**dy Bug**ry disease. Hope your new treatments zap everything in sight.
Cathy - Hope you’re really enjoying the relief of having the visitors go home. It’s great to have your home to yourselves again, isn’t it? I can really understand what a burden it feels for you, all the emotional stuff you end up taking responsibility for, when they should be supporting you.
I saw a lady in a car today who looked just like you - I had a momentary warm happy feeling - then realised it couldn’t be you (stupid!). But it made me smile anyway. Let’s meet up again soon.
Love to you all and everyone else
Jacquie xx

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That was Dawn, I meant, in the car…

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Hi All- I am sory to just pop into your thread out of nowhere. Gayle and I have been friends since she was 15 and have been married for 12 years. She has a long family history of Breast and Ovarian Cancer and she was diagnosed three years ago with Breast Cancer. She went through the treatments back then and just had her annual check up with her onc. All was fine and clear. She was having a pain in her side and went in for a CAT scan to be safe. We thought we were through the cancer thing but the scan showed that there IS something in her abdominal area. We are going to do a P.E.T. Scan next week and perhaps a CAT scan guided Biopsy as well to see what it is. I am a little freaked out but I can not let her see me this way as I have to be strong for her. So, here I am…Mike

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Hi Mike,
I am so sorry to hear what you are going through - you must be in a state of shock. And it is fine to just jump in to the thread. It’s unbelievably stressful waiting for further tests - I don’t think anyone can really imagine it who hasn’t been there. All you can do is try to be easy on yourselves, try to keep a bit busy to take your minds off it, and just be together in it as you count the days. I’m sure Gayle is really comforted by having you beside her and going through it together.
You haven’t mentioned where the scan showed up something, but as you came on a liver thread I’m wondering if they’ve said it’s on or near the liver? You’ve probably read some of our posts and can see that there are lots of us living really well with spread to our livers, and some with many years already under their belts! I think many of us thought at first that that was it - time up. But we’ve discovered there is a lot they can do to treat it and keep it under control.
Don’t be too tough on yourself. It’s okay for you to break down sometimes. Believe me Gayle won’t be freaked by that, but will value the love and closeness that reveals. Do you have any good friends/brothers you can talk to honestly?
I wish you both the very best for this week
Jacquie

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Hi Mike

Just replied on your other thread but wanted to say (like Jacquie) that it’s no problem jumping into this thread. And if they have said that it might be on or near the liver, as you can see there are 31 pages on this thread to trawl through LOL (not all of it by any means though is “serious” stuff - we have a bit of a laugh as well!).

You ok, Jacquie?

Love to all

Kay xx

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Hi Kay,
You’re on here now too! I just asked you some questions on the tumour markers thread. How are you feeling about the state of your liver now? Has the shock subsided?
I’m doing fine really. Just incredibly tired at the moment. Been doing too much, and getting treatment every 3 weeks as well as working puts the pressure on. We’re getting away for a few days and the kids have revision to do, so we won’t do much except a few walks on the beach and card games. I should have a chance to catch up on some rest. Since changing my brand of Tamoxifen to improve my eczema, I’ve hardly had any hot flushes! a happy side-effect. Not often we get a bonus, is it?
Love to you. Looks like I’ll miss the meet on the 19th - maybe we could do a mini meet in the holidays?
Enjoy half term
hugs
Jacquie

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HI Jacquie

Still on! Just been reading a few of the other threads. I’m doing ok though will feel happier when I have my scan and know the xeloda is working - won’t be for another month or two though, so am just trying to get on with things really. It’s tablets twice daily - 14 days on and then a week off, and have done about 10 days so far. No real side effects - tum has felt a bit unsettled at times but nothing major. Have got my hysteroscopy (cos of the thickened womb lining) on Wednesday and hoping I will be ok to go up to my parents (in Cumbria) on the Thursday. It’s a general anaesthetic but only a light one evidently, so hope I’m being realistic!

Good to hear about the Tamoxifen change - didn’t know different brands could work like that. I had horrendous hot flushes when I was on it - used to literally drip!

It is easy to do too much isn’t it? I find I can do things but then just don’t recover in the same way as I used to - one of the nurses gave me a stern talking to about pacing myself. All about only doing a little bit more on my good days than I can on my bad instead of going mad and trying to tackle everything!

Sorry you’ll miss the meet on the 19th - if you were nearer I’d come and lend a hand with the packing so you could come! Are you off to Sussex again? Would love to do a “mini meet” (liver birds in London?) over the holiday - have just booked a cottage on the Lizard for Aug 9th for a week. But have no other definite plans at the moment. Do you work term time only as well?

Right, must go and start some dinner. My football watchers are on their way back (despondently) from Wembley!

Have a great half term.

Lots of love

Kay xx

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Back from the hospital a few hours ago after my hysteroscopy and all went well. She found what she labelled a “large, juicy polyp” (evidently pretty common in women having bc hormonal treatments) and nipped it out there and then. Even gave me a photo of it - definitely won’t be putting that one in a frame!! She described herself as absolutely confident it was benign because of how it looked/was growing but they are doing a biopsy just in case. She also feels it is the source of my problems with bleeding over the last few months. So (despite the biopsy) actually feel hugely relieved - with every test/procedure I’ve had for the last 5-6 months being bad news, I had geared myself up this morning for yet another “shock”.

Off upto Cumbria to see my parents tomorrow for the rest of half term and calling in to see my sister in Cheshire. And finish my first 14 days of xeloda tomorrow as well with no obvious side effects (am on a reduced dose though).

Hope everyone else is ok - Dawn, keeping my fingers crossed that your CT results arrive soon and are really good. Will try and get online to see how things are but not sure how possible at my parents. Sorry my email response to you was a bit brief this morning (and probably not much use at all) but was literally about to go out of the door on my way to the hospital.

Love to all

Kay xx

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Hi Kay

Glad all went well, I hope you have a good time in Cumbria and a nice rest

Beli x

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Phew Kay!!! At least that should be the answer to your probs!!

Whereabouts in Cheshire is your sister?
I’m in Ellesmere Port, Cheshire so just sooooooooo very nosey!!! hehe!

Anyway, enjoy the break and chill !!!

Anne xx

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Thanks so much for your support Beli and Anne - it was a bit of a “phew” moment indeed! Not sure I realised just how stressed I was about it until afterwards.

Had a lovely time in Cumbria - even managed a short walk up a (very) small fell which was great. And seeing my sister (and nephews) was really good - they are in Goostrey, Anne (near Jodrell Bank). I was actually brought up in the same village - my parents moved to the Lakes when I was 18, and then my sister moved back to Cheshire when she got married. My brother isn’t far from you though - he is in Bromborough.

Any news from your onc, Dawn? You must be going mad waiting for the results - it seems to have been ages.

Hope everyone else is doing ok

Lots of love

Kay x

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Kay

Soooooooooooo glad that you had a lovely break at the weekend!!

Got to say, small world isnt it?? Yes, I am a few miles from Jodrell Bank - went there as a kid - but my sister used to live in Macclesfield!!!
I regularly go to Bromborough shopping - in fact, was there twice last week!!! :-o

Retail therapy - mmmmmmmmmmmmmmm - think that I need some!!! Hehe!!

Keep those chins up, everyone

Love Anne xx

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Hi all

Just wanted to say I’ve been busy so haven’t been around much I’m off on hols on Sat so I hope you all behave yourselves while I’m away.

I have mega cold at the moment so hoping the sunny climes will sort that out, I’m off to hosp tomorrow for more chemo.

Look after yourselves sending big hugs to you all.

Love Beli x

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Hi girls,
feeling a bit out of touch. How are you Kay? Dawn? Cathy? Anne? I’ve spoken to Tracy recently and Wrighty, who’s going on hols tomorrow. I’m going in a week, so I’ve been to the library to get out guidebooks - will I have time to read them all as well as doing all the ironing?!
Daughtrer (16) has finished exams, so we went girly shopping yesterday, so at least she now has some sunmner clothes to wear! Son still going this week, two more A levels then it’s all over - I will never have to nag him about work again. It’s really been quite stressful, especially when the hayfever kicked in so badly and we were all sneezing all night.
Hope you all have a nice weekend planned. We’ve got school summer fairs at two different schools, so sending teens to do their own thing and I’m helping at the primary school. I volunteered to face paint, which i really enjoy, but suspect i’ll get put on something grotty and boring as i only volunteered yesterday.
Take care my lovelies,
Jacquie xx

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Hello Jacquie-
How are you doing - you sound like you have alot of energy voluneteering for the school fair, I know how much energy those take as i have done the plant stall the bric a brac, and the silent auction. I think the bric a brac was best. On friday of this week there is the school trip to france and i am supposed to go along as extra police checked parent… I think this may be a lot to do…

I have been really busy -even went to new york for a week on business, which was something. It was tiring because of the pressure of being on good form. Still it was great to see the city and do a tiny bit of shopping, I also got a chance to meet up with my sister. Travel was OK as company paying for it, so nice car etc from airport takes away the stress.

You are off to spain aren’t you? Hope you have a great time there

I have been a bit up and down mentally, I think its a combination of delayed shock, scan coming up probably at the end of the month and a sense of pressure…I feel I have to get the letters etc sorted out, i think these are the things that keep coming up for all of us, and as you girls my family has its particular twist on it, Have made some progress… I think we are going to go off for a short weekend somewhere to have a treat to look forward to.

Wrighty have a great holiday, Kay, Tracy, Ann hope you are all doing OK, Dawn hope the little one isnt running you ragged, I saw your scan results and posted on that - was really pleased.

This hay fever thing is real isnt it - have been sneezing, wheezing and dripping nose (yucky) for about three- four days - hope this stops!
love to all
Cathy

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Hi All

Kathy wow - all that working and going to NY, you must be well tired. Hope you not overdoing it and sorry to hear you not been that great. I know what u mean though, as think we all go through the same emotions as you are right now its just trying to shake them off, and get back on to an even keel. Hope you feel better soon and enjoy your weekend break.

Wright have a fab holiday and you too Jacquie. Soo jealous, but am in the midst of booking my next one for August. Got holiday insurance quote from Mia on Friday £44.50 for europe, so that is good. But enjoy yourselves, forget about us lot and go have fun.

Kay hope you feeling OK too. Bit worried about you. But hopefully see you on thursday at the picnic.

Tracy wot u up too. Sorry missed you on MSN a lot recently, but not been on there as been working hard (and i mean hard LOL) on my OH’s website for our new business venture). So not had time to chat to anyone, just been logged in but had my head down. Hope u are doing OK though.

Anyway, just thought would sure some more of my good news with yourselves.

Got a reply from my onc on Saturday to my letter I sent him after my results, and as you prob know the ct scan does from abdominal area to chest, so covers lungs, bones and abdomen. And these were all clear, however, for some strange reason does not cover boobs, and apparently will probably have mamo in July, but that is under jurisdiction of someone else.

With regard to the “numerous lesions” on my liver, apparently only 2 are now visible one measuring 7mm and one measuring 1.2cm, so that is good news for me. So hopefully things will keep moving in this direction now, and maybe if carries on, I might be able to go for ablation further down the line, but not holding out too much for that. But am really happy now about my results.

So feeling pretty good about it all right now, and pleased with the way things going. Lets hope it continues.

Dunno if any of you saw that piece about Lapatinib/Tyverb uk.news.yahoo.com/skynews/20080613/tuk-jane-tomlinson-cancer-drug-released-45dbed5.html - sounds good to me too, and one of the Ho Hummers sent another piece similar but included info about lady from southend who already gets it, before been licenced …

Being HER2 positive meant Carol was eligible for the drug Herceptin which again kept the disease in check but by January this year cancer had spread to the brain.
Fortunately Carol lives in an area where there was an ‘Expanded Access’ programme allowing women like her with advanced breast cancer to receive Tyverb even though it had not been licensed.

So that good for me too maybe, as I go to Southend, so sounds like they get some of the treatments on trials etc.

Anyway, I am now rambling, you have probably ALL fallen asleep. So hope everyone is ok and catch up soon.

Love
Dawn
xxxxxxxxxxxxx

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Hi Luvlies,
Good to hear from you both. Cathy, hope you’re holding up okay emotionally and France isn’t too exhausting. Even in the midst of living a fairly normal life, it can jump up and bite you unexpectedly, can’t it. I was out today and saw a v young mum with a chemo headscarf - it just took me straight back and made me feel shocked all over again at what I’ve been through!
Dawn what’s the new business venture, or is it top secret?! sounds exciting anyway
Love to everyone
Jxx

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Hi All

I’m back had a lovely holiday, my cold cleared up I think as soon as I stepped off the plane.

Dawn - where are you hoping to book in August, your results were brilliant you must be so relieved. The new business venture sounds exciting. You are definitely keeping yourself busy.

My OH is starting a new job in August and has lots of holiday owing so he is off the WHOLE OF JULY I’m not sure if I am pleased your not will let you know at the end of July if I’m still sane.

Love to all
Beli x