Anyone else with liver secondaries?

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HI Joy and Jacquie (and others)

Glad to hear your onc has come up with some solution, Joy - hope the feet keep on being “not too bad”. I’ve found it utterly miserable at times when they have been at their worse. Thanfully mine too are not too bad though one foot is very itchy which is driving me a bit mad today. Don’t know why it should be just one foot! Hands this time (having peeled last time) seem ok - just a bit red if I get hot and a bit tender around the joints.

Congratulations to your son, Jacquie - you must be so pleased he’s got his place at his chosen uni. Sure you will miss him though when he goes. Hopefully the GCSE results will be good too. My younger 2 are also on the move - C moves into a flat in London in 2 weeks with her friends though she doesn’t wtart “work proper” until December. She’s intending to get some temporary work. And M is off travelling again (he went to NZ and Fiji last autumn after graduating) in 2 weeks time before he starts work in November - Thailand, Australia, NZ (again!) and Los Angeles. SO having been “4” over the summer, we will be back to being just 2.

Know what you mean about the Olympics as well - I can’t cope with thinking beyond 3-4 months and hearing all this talk of 2012 is quite scary, particularly as hubby and son are both sports mad and very keen to go in 2012. Even though things are going well for me at the moment in terms of controlling things, it is clearly a matter of “controlling things” and knowing that at some time that won’t be possible. And I do so wish I could just have some time when I am not having to deal with sore feet… and upset stomachs… and taking drugs… and endless hospital visits. ANd wondering how long this drug will continue to work. Perhaps as time goes on my confidence will grow that xeloda (and Herceptin for you, Jacquie) will work well for a long time. It is why I love to hear of people like Pinkdove, Blondie etc and it gives me a real lift.

Take care all - are you back from your holiday yet, Dawn??

Lots of love

Kay

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Thankyou, jacksi for your reply. Hope all are doing as well as can be. x

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hello All

Have been on my holidays to Berlin - walked around the city alot and learnt alot about cold war, second world war an had a really interesting time, we found some great places to eat, really enjoyed it. It did get very tiring a couple of times when the guide book wasnt specific enough on distance, We then went off this weekend to oxford _ jacquie snap! We stayed with friends outside the city and came in to walk around and see the city, go out for lunch, enjoyed it.

Well I know what you mean about 2012 - the children were going on about it this weekend and it was a little upsetting. lucky for me my OH and son aren’t bothered. I was very down for a couple of days after coming back from germany as I had really left it all behind, and then a bit of a reality check. Also I hope I dont upset anyone by mentioning this - but I met with the hospice nurse. It was helpful but hard, a serious reality check, but a very nice woman, they will arrange counselling for me if I want it. I think I have got alot of mileage out of arranging things to look forward to, I really enjoy them, but then I feel under tremendous pressure to book something else!! So its riding the rollercoaster…I would like it to be a little more even but maybe thats not possible.

Jacquie - congratulations on your son that really great…you must be so proud that he is sorted.

Kay - what can I say about your markers - thats fantastic…I am so pleased for you, I hope it will do the same for me. suspect that i will be on it soon.

I had a lovely moment that I will share with you with my son -we were sitting on bench in the garden and I said to him - I really like sitting here with you, then he finished the sentence and said “because I love you.”…You can imagine what this meant to me,

Beli, Joy, everyone else - hope you are doing well, have been following all notes on xeloda with interest.

take care
cathy

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Hi Cathy,
Wow! What a beautiful moment for you with your son…you must have been really choked up.
Fancy you being in Oxford too - we went Thurs/Fri. Imagine if we’d bumped into each other!
I know just what you mean when you say; ‘I think I have got a lot of mileage out of arranging things to look forward to, I really enjoy them, but then I feel under tremendous pressure to book something else!!’ Like I said above, I’m tired of forcing myself to try and look forward to the next thing - and arrange the next thing so I’ll have something to look forward to. It’s exhausting.
I finally cracked today - it’s been building up for a few weeks, but I just kept crying at the hosp today. Needless to say I arrived at 8am for my herceptin and they had taken me off hold, had it made up and ready, but…didn’t have a prescription signed for it! So I had to go and see the doctor before they’d give it to me. Fortunately he saw me straight away at about 8.30, before the clinic started properly, and I just cried in there as well. I think I’m just exhausted from putting a brave face on things. It’s the children mostly. They look so stricken when they think everything’s not okay and I just can’t bear it. So I put on a pretence that everything’s normal. The summer hols has made it even more difficult.
He suggested I see a counsellor so I can let it all out without feeling responsible for anyone else’s feelings, and I’d started thinking that might be a good idea already. It’s really just a relief to have identified the feeling that’s been building up for so long.
I then went in to work and cried again! Then I looked in my in-tray and there was a ‘you make the difference’ NHS award from the Trust I work for, thanking me for a piece of work I did recently and giving me a £25 shopping voucher!! Bl*&%@! no one has ever thanked me, in all my years working for the NHS!!! I couldn’t believe it. And it came just at the right time, today. (Incidentally it’s not NHS money they’re using - it’s money left as bequests to be spent on the staff only- I checked).
So, a little silver lining in my otherwise grey day.
Take care everyone. I’d like to hear from Dawn and make sure she’s okay.
Once everyone’s back to school etc in September we must think about another meet up. I walked past St Paul’s last week and really missed you all.
Lots of love
Jacquie xxx

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Hello Girls

I just wanted to say I know what you mean about arranging things to look forward to. We have just come back from a very wet cornwall and it was exhausting. We visited lots of things 'cos it was wet and walked loads. I was really trying to make things as normal as possible for the children although they wore me out. Last years holiday was so tiring as I had just finished chemo didn’t have any hair etc.
We have booked to go on a cruise in January but although I want to go I am a bit scared that things will change and I won’t feel as well as I do now.
The trouble is when the children are on school holidays you are always on show to them. At least when I dropped them off at school and I felt a bit down I could go home and have a little cry.

We just have to keep going don’t we? Sometimes I think it was easier at the beginning 'cos everyone expects you to be emotional and I didn’t need much to make me weepy.

Anyway sorry If I rambled its nice to see everyone posting again its been a bit lonely.

Caroline

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Hi All

Sorry for absence, back from hols and now just off for herceptin so will catch up later, but thanks Jacqui, I am doing OK and had a great holiday, but tan is starting to fade LOL

Catch up later everyone
Lots of Love
Dawn
xxx

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Hi All

I think we are all on a rollercoaster ride, I know my emotions are all over the place and certainly wasn’t like that before anything and everything can start me off, for instance you all know my OH was having four weeks off before he started a new job well the company pull their offer so he is still at home looking for another job and I have been in overdrive stressing. I have now calmed down a bit. I have been for some counselling and I think maybe it helps to talk to somone away from the family and someone who really doesn’t mind if you cry the whole session. My daughter is having some sessions as she finds it hard to deal with the thought of losing her mum.

Kay - sounds like to did a lot in Cornwall and had a good time. How do you find it when your family come home or are you use to it, our girls were away this weekend and it felt strange just me and OH.

Cathy - what a lovely moment you had with your precious son brings a lump to my throat just reading it. I’m glad you enjoyed Berlin we went a few years ago.

Jacquie - Well done to your son what brilliant news and now the GCSEs its an emotional time all round, and well done for getting your shopping voucher its nice to know its all worth while.

Caroline - sounds like you are just exhausted and I know its hard to keep going ut you have got us here where you can rant as much as you like.

Dawn - Glad you had a good hols, you will be rusty coloured with all this rain, hope today goes well.

Love Beli x

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Hi all

Your post, Cathy, made me cry - what a moment to treasure! And so impressed with your award, Jacquie - I know the lack of thanks within the NHS system so for someone actually to acknowledge the work you’ve done is fantastic. I do get thanks from the parents (and children), occasionally from my manager/colleagues but never from the “organisation”!

We do all seem to be struggling a bit at the moment though despite these few good things. I’m just really tired of it all. Has anyone else found the offers of support dwidling as well? At the beginning there was lots of support from all kinds of people but now it is almost as if they have got used to it and it’s back to the normal routines etc. Not everyone of course but quite a few people. I feel quite resentful just because they can “forget” it’s happening. As you say, Caroline, at the beginning everyone expects you to be emotional but now they seem surprised!

And even though my children are older, I still feel I have to put on a bit of a front with them as they all get so down if I am struggling. Also fretting a bit because my son is off travelling again at the beginning of Sept for 2 1/2 months and I am just so worried I might have problems whilst he is away - but I can’t somehow talk to him about it because he assumes that because the xeloda is working well now, it is bound to work well for some time to come. Wish I could be so confident. And youngest daughter is moving into a flat in London at the same time, so it will be very quiet here. Keep telling myself it will make my life easier but … I had got used to it being just me and OH, Beli, but having had the 2 of them at home again, I will miss them greatly.

Had some counselling last year which definitely helped so would recommend it. I saw someone at the cancer centre so they were used to working with people with advanced cancer and all the issues that brings up.

Glad you enjoyed Berlin, Cathy, and that you enjoyed your hols as well, Dawn. Caroline - we must have been in COrnwall much the same time. It was truly wet wasn’t it? I had imagined lazing on the beach or on a cliff top but like you, did lots of things instead (St Michael’s Mount, the Eden Project, Lost Gardens of Heligan etc) and have probably just overtired myself (though I did enjoy it).

Take care all

Kay

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Hello All

My oh my me are all riding the rollercoaster here. Jacquie sorry to hear you felt so sad, but gald that they have come up with an offer of counselling. it is emotional exhaustion it really is. Its so hard. some days I cope OK others its a nightmare. I am glad we can be honest here at least, (but even on this forum I have felt incredibly upset when people post about how depressing it all is and what a terrible site that makes it ). Jacquie glad you had a shopping voucher (think you should spend it all on chocolates) !! Rest assured in the private sector thank yous are few and far between as well, in the business I am in I am supposed to be grateful to be employed.

I can honestly say that only one set of friends that we have have really grasped what this means and are really supporting us.

Caroline - cruise sounds fantastic, glad you had a good holiday I know exactly where you are coming from.

I think we should definitely try to pencil something in for september to try to meet up - think we should have a day out at Alton Towers, go for balloon ride, or failing that a meet up in the usual place! Now back to work (arrggg why do it -beyond obvious reasin of paycheck)

love
Cathy

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Oh sodding machine!! I just wrote a great long reply and now it’s lost it. I’ve got in the habit of copying my message before i try to send it, but I forgot this time.
Sorry, but I can’t be bothered to type it all again - I’ve got family queing up to use the computer, breathing down my neck. Suffice to say I agree with everything you’ve all said. It’s really good to share the blues with you and not feel alone
love and a big hug to anyine who needs one
Jacquie xx

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Hello All

A bit wobbly at the moment to say the least - I had been expecting it but its never the same as actually getting the news that the cancer is on the move again. I posted in another thread but markers have shot up to 84 from 33…i know this isn’t as much as some have experienced, but its a shock to me how you can be going along at say +3 each time and then wham up it gos. Onc was happy to leave it for 4 weeks and see how it gos - but I slept on it and decided to bite the bullet and get the scan.

Booked in for a scan on 1st of September and results the next day, lots of people away next week. At least I am getting the person i like to read the scan not the pompous old bastard (please excuse my language but I really didnt like him) who read the first two or three.

Kay , I am hoping I can have an experience like yours and get on to xeloda successfully, when I know whats up I will pm you,hoping to have a nice weekend and see thhe new narnia film with my son - so a bit of escapism, I always liked those books. Jacquie - have the vicar coming around next week, its always good to talk to him…

Anyway I am off now - at least the zometa seems to be kinder to me this time.

love to all ,
Cathy.

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Hi Cathy (and others)

Have posted on the other thread but just wanted to say again how disappointed I am for you. Glad though that you have got a scan booked and the results the day after - and the right person giving the results! Whatever the treatment, I do really hope it works as well as xeloda is doing for me - do pm or email me when you know a bit more. And enjoy the Narnia film - hadn’t realised it was still being screened as intended to go and see it ages ago with C but then other things got in the way. I really enjoyed the books as well (both as a child and rereading them with my children) - in fact I wouldn’t mind reading them again.

We’re off to my parents in Cumbria for the weekend which hopefully will be ok. Always feel a bit under pressure to put on a display of coping well! Hubby also wants to get me up another fell - promises it will be only a little one (don’t think he’s planning Helvellyn or Scafell!). It would be lovely if I can but feet are still quite sore - perhaps they’ll be ok in the walking boots!

WIshing for a good weekend for us all

Kay x

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Hello Kay, Cathy, Jacquie and all…

Haven’t posted for a while as summer has been a bit busy and I’ve been trying to treat myself to a month freee of thoughts of cancer. Really hard to do…
I spent the last week on a cycling trip with my daughters in Burgundy - nothing too ambitious in the way of hills but a lovely week. We all know that we are doing this because we don’t know how much more time we will have together and their partners readily let them go without grumbling for the same reason, but of course none of us mentions it! Still it’s lovely that they want to make this time together. They also both tell me that they have come off the pill as this whole business has made them realise that you have to live for the present. It’s funny how the roles have changed - they carry my bags, make sure I’m crossing the road safely etc etc. Not that I need any of this yet but it’s sweet anyway. I thought I was a competent, confident, professional woman - apparently I’m a doddery old bat on her last legs!
2012 does seem to have taken on iconic status doesn’t it? Before I my secondary dx I volunteered to help at the games. 2012 is when I am due to retire so I thought it would be a good way to mark the occasion. Now - well who knows, but I’m not giving up hope. I’m feeling really well at present - Arimidex seems to be doing the trick - however the next scan is tomorrow and the next oncologist visit on Sept 5 after which my life might turn upside down. Hope I can be brave if it does. Good luck with yours Cathy and glad to hear things are going well for you Kay.
Barbara

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Hi Barbara,
Good luck for tyour scans and results.
I am due a CT scan on Wed and Heart Scan on Thurs so fingers crossed.
Let me know how you get on. I’ll get my results on 9th Sept.

Best Wishes
Kate

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Hi Ladies,

I’ve written to this site before. I don’t have BC but my Mum has secondaries in her liver and lymph nodes. It has been exactly a year since Mum was diagnosed and we are just not sure whether she has been receiving the correct amount or type of treatment she should. She had a course of chemo, that lasted from October last year to February this year (5FEC + Epirubicin) and had an op to clear the nodes out from under her arm.

She had her last consultation with her onc in April and he said “see you in October”, adding that since she was HER-, all they could offer was the chemo she had received and that was it. There was no suggestion of scanning her again to see if the chemo had made any difference. I was so worked up that I phoned the unit up at hospital and asked what was going on. I couldn’t speak to the onc but got to speak to the McMillan nurse who always takes care of Mum when she is at the unit. She checked Mum’s notes and said that they couldn’t do any more scans as she’d had an initial MRI scan that showed the infected liver + mammogram and they didn’t want to do too many scans because of radioactivity.

So how come I keep reading on this site about you ladies having regular monitoring, scans, “markers” (I don’t know what this means)? Is my Mum being sidelined because she is elderly? What is going on?

She is having a mammogram at the end of September but nothing has been said about monitoring the infected liver at all.

Any advice or clarification would be welcome.

Psyche

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Hi Psyche

I have a scan every 4-5 months and the oncologist looks at the level of cancer proteins in my blood every 4 weeks when I come in to have bone strengtheners. As you will see from this site most of the women here with secondary cancer will have multiple scans and multiple chemos…if a BCN nurse said that to me about radioactivity I would scream the place down- it completely ridiculous…

She may not need another scan if she is having her blood markers done and a good eye is being kept on how she feels, but she should be looked after properly just as you say. My oncologist is looking out for the cancer coming back and checking so that he starts treating it again at the right time.

Just a little thing - I think it may be better to say that the liver shows spread, or there is cancer in the liver rather than infected…it may just be me but I dont like to think about infection!

Cathy

I hope you can get some straight answers here.

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Hi Psyche

Sorry to hear that you are so worried about your mum’s treatment - and it does sound a bit odd to me as well. They don’t like doing more scans than necessary but my understanding is that most people would have had a scan to see whether the chemo was working. My onc has delayed my last scan (I have multiple mets in the liver) because my tumour markers were coming down spectacularly well and so he was confident the chemo was working for me. However was at the hospital this morning and he now feels a scan is appropriate to see what the chemo has done to the size of the tumours. In the last 15 months, I have had a PET CT, a CT and 4 MRIs (each of which was a double one, ie go in 2 days consecutively so + 8 MRIs really). The advantages of knowing what is happening far far outweigh any risks of extra radioactivity exposure, according to my onc.

Tumour markers are another way of monitoring how active the cancer is (ie the higher they are the more active). They are probably more contraversial and many oncs don’t use them, though for me they have always been a very good indication of what’s going on. It’s a blood test and measures a particular protein in the blood. A single test for your mum wouldn’t give much information as it tends to be the trend they look at and if there isn’t a score for at least before chemo and immediately after chemo, the score now is not going to carry that much meaning (unless it was within normal limits which obviously would be brilliant news).

Another way of monitoring things is through the breast lump I think - I had a mastectomy at primary dx, so no lump left for them to monitor, so not something I know a lot about. It could be though that your mum’s team can tell that the chemo has had a very good effect on the size of the breast tumour and so know it was an effective treatment. Is it a lump she can feel? And if so has it shrunk on the chemo?

Has your mum got an understanding GP? Could you go and talk to them with her about the treatment etc and your concerns? The GP should also know whether tumour markers have been tested for and what the trend has been. Alternatively (don’t know where you are or how easy it would be) you could get a 2nd opinion somewhere else. It seems very odd that they are saying all they can offer is the chemo she has had as there are many many chemos available. Maybe they meant that was all they could offer at that stage, but it does still seem odd that they haven’t checked in some way that it has worked at all. A 2nd opinion might give you and your mum some more information about what options are available.

Will you go with her to the appt in October? If so, could you ask then how they know that the chemo was effective? ANd also what the options are for future treatments - I personally find it very reassuring to know that there are quite a few chemos that would be available to me should the current treatment stop working.

Sorry, Psyche, don’t know whether any of this is of any help. Hope you manage to get some answers.

Kay

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Hi KatharineM and Kay 123,

Thanks for the info. It’s got me really worried though because the unit hasn’t carried out any monitoring of Mum’s condition at all since April. No blood tests, no scans, no nothing. She has had a couple of visits to her GP on unrelated matters but all they have done when the subject crops up is prod her abdomen to see if there is any swelling and that’s it.

One thing I forgot to mention - after my phone call to the hospital, a “strange” letter from the unit arrived, saying that after all, they thought Mum might be borderline HER+ so they were prescribing her tamoxifen, which she has taken ever since.

That letter arrived in May, some 9 months after Mum’s diagnosis and op. Surely, they would have known whether it was HER- or HER+ at that time, not 9 months down the line. It made me very suspicious that the tamoxifen is being fielded as some kind of fob-off to make it look as though they are doing something.

Trouble is, my parents just don’t ask questions. They don’t want us to come with them as they prefer to go as a couple but when we have asked questions afterwards, they have no answers. It’s not that they are hiding anything - they just don’t ask anything and presumably, if you don’t ask, you don’t get told either.

It would be easier to get an audience with the Pope than to get anywhere near Mum’s onc, who apparently, is very prestigious in the field - and yet he hasn’t done a great deal for Mum.

As you can gather, I feel angry about it all and frustrated with my parents and helpless to do anything about it, as they are just content to sit it out until October because “the experts must know what they are talking about”. In the meantime, we have no idea whether there is any spread or whether things were controlled by chemo.

Psyche

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I’m sorry to hear about your problems with your onc and your mum’s treatment or lack of it. Hpowever, prestigious th onc is, he should see or his team should see their patients. With secondaries, they will scan quite often to see if treatment is working so I think that is some kind of excuse. Not all hospitals do tumour markers so don’t get stressed over that. Ultrasounds are easy and not using radioactivity or magnetism and are quite useful in monitoring liver spread so I can’t understand why they don’t offer that.
I think it is so difficult with parents as they see doctors as ‘gods’ and won’t question or push like we would. I would get them to write a list and see if they can fill that in so that you have some idea what is going on. They may think they are helpinjg to protect you and know more than they are letting on. Some people just don’t want to know so don’t ask questions - it’ s how they cope especially the elderly - although you do not say hjow old they are and i would imagine there are different women here who are of similar age.
Her2+++ is when the bc is excreting herceptin and the treatment is herceptin or trazumazab. Tamoxifen is used when the bc is oestrogen dependent and the tamoxifen stops the oestrorgen production so I think you need to get that cleared up as it 2 totally different things and tamoxifen is not given unless the tumour is oestrogen positive nor herceptin given unless it is her2+++.
Sorry seem to have left you with more questions than answerrs.
Just ask again and we’ll try to help you.
Love Kate

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Hi - is there room for me on your thread??? Think I’ve met a lot of you anyway before mine decided to spread to my liver and block my common bile duct turning me a lovely shade of yellow. My bilirubn levels are still not back down to normal but improving as are my LFTS. My Hb is 110 so really pleased with that. I jus find with a combonation of my swallowing problems my weight is still going off. I was sure last week I#d gained some but been busy since monday and think I’been just too busy and it’s so difficult to find food to eat in restauarants. Seem to be living off soup and jelly and custard when i’m out plus 3 - 4 fortisips a day.
I got them to recheck the dose of taxol I had 3 weeks ago and the reg did use a weight of 18 kg than i am now and my previous height instead of my new height which is 3 cm smaller so ended up with a 9% overdose 2 weeks ago so hopefully won’t feel so bad this cycle.
Do you have any plans to meet up?
DM68 I came up your way the other week but realised you were away so have to see when i go up to see my sister again and hopefully meet you then.
Manon, Kay, Caroline, EamesK, Jacksy and Katherine - think I met you all at Guildford or London. Think it is just Belinda and Cathie I’ve never met. Find this liver lark far more scary that my lungs/heart situation so do need some encouragement.
Have had 2nd taxol today so too high on steroids to sleep at present.Just had 3 great days out with kids and stayed away on my own with them in a hotel so have to let you kno how I fare with this taxol.
Kate