Anyone else with liver secondaries?

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61

Hi Dawn

Sorry to hear about your experience and hope you’re feeling a bit better today. I’ve had some bad experiences in the past with registrars seeing me that in the end I asked if I could see my oncologist each time and this is what happens now and we have a good relationship because she knows my situation. I hated it when I saw someone different each time as I felt they didn’t know ‘me’ or what was wrong with me (I have liver and bone mets as well).

I was tested to see if I was HER2 positive 3 years ago and they had to do the FISH test (which means Fluorescence In Situ Hybridization!). Evidently it’s quite an accurate test and I think mine had to be sent away to London (not sure whether it was the Royal Marsden). What amazed me was that they still had my nasty bits of my boob from 1995 and were able to check from that whether I was HER2 positive or not (turned out I wasn’t).

Keep the knowledge that your tumour has shrunk with you because that’s great news - I’ve had my two latest CT scans showing that my tumours in my liver have shrunk (am on capecitbine) and that gives me such a big boost as I was told last year that I needed to get my affairs in order.

Long may your tumours continue to shrink!!!

xxx

62

Hi Dawn,
Glad to hear you are doing well and those b*****s are shrinking a bit. I was given the go ahead to have a drink again about 3 weks ago when my blood results started to look ok and I have been having a wee drink of the old vino!! My bloods have been fine since but don’t need to drink as much now to get tiddly! I go weekly to the chemo unit and haven’t since my onc for 4 weeks now so I always think its a good sign if I can get away with seeing my fave onc nurse. How is your mouth now has it cleared up yet?
Cheers
Allie

63

Hi All

Well had a glass and a half of wine last night - not sure if really enjoyed it though. But have decided it won’t hurt me and wot the heck, live for today!!!

Allie, my mouth is fine now and back to normal, although all starts again on Wednesday - not looking forward to it though, but if it is working, bring it on. How are you doing too, are you all back to normal again.

I or should I say, me and OH have decided to finish my chemo (only 2 more to go supposedly), next one on Wednesday and then get second opinion. Not sure if worth doing anything right now til finished chemo - wot do you all think. We are definitely going to ring up when next appointment comes through for onc, and make sure it is him we see and no-one else. Am I being naive here, or is this sensible. Think if go for second opinion, they would probably say finish chemo, have scan on liver and go from there.

Anyway, enough of me. Hope all you lovely ladies are doing OK. Wisdens hope you are well and enjoying your weekend and had good time with grandaughter the other day. Sounds like your last visit to hospital was a bit drawn out, but you got through it.

Pinkdove thanks for you comments and info about HER2. Am a little shocked as was told by BC nurse that would get Herceptin as was sensitive to it. She never said I was boderline and would need more tests, so bit annoyed about that too. Doesn’t take much to wind me up these days!!! Am getting more use to using my blue badge now, and it is soooo handy sometimes, specially with the kids and getting in and out if all baby spaces taken up!!! Still getting few stares, but I am getting use to that too.

Hope everyone else is OK. Jacquie not heard from you for a while and so hoping all is OK with you.

Take care everyone and have a good weekend.

Love
Dawn
x

64

Hi All

Just about feeling better after treatment on Weds however the old mouth is foul - pigeon and sandpaper - although it does help to keep rinsing … guess what had 4hrs sleep last night…might be why I feel better.

Love W

65

Oh Wisdens, so sorry you don’t get much sleep. Apart from about 4 or 5 days after my first tax, I have not had any probs sleeping. Maybe the little ones help on this front, as keep me so busy during the day.

Glad you are feeling better now apart from the mouth and hopefully that will get better soon.

Take care
Love
Dawn
xx

66

Hi

Thanks Dawn as you say all the energy you expend during the day helps although I do go to work or at least I am back tomorrow having taken 2wks holiday booked over a year ago. Just had onc on phone, saved me getting the car out… resultof scan is fluid which they will drain the off lungs on weds next taxol/avastin if it is still there… also sorting out zalidronate bonemets medicine - which is way past its due date. Good news -I get a wk off what shall I plan? Have grandaughter still here she had to spend the night in hospital for obs… chest infection nothing too bad in fact she got it from her Mum who has a horrid cough, but all children go from being as bright as a button to lethargic, as she had been sick a lot and not drinking water it was better to get seen by someone. Your little one I think is the same age 11months?

OH and I will be going out in a mo for my exercise along the beach it is lovely sunshine so that at least a couple of hours come my way tonight - luckily work isnt til 11am tomorrrow.

W

67

Hi all

Trying to catch up with all that has been happening in the last week or so. I had a lovely time in Amsterdam (lots of sunshine and sitting on canal boats, watching the world go by, with some good meals and the odd drink thrown in) but things haven’t been so good since. Had a bad reaction to my chemo on Friday - was actually sick for the first time and then felt really grotty and tired all weekend, until I realised yesterday afternoon that I was running a high temperature. So off to the hospital where they took loads of blood to test. They showed my white blood count was actually reasonable but they’re still debating about whether I should have antibiotics or not - more tests but at the mo, they seem to think it’s a virus. I am feeling better today as well but still having a really lazy day (with the laptop!) in bed.

Dawn - you must be due to finish chemo about the same time as me I think (early Dec). My onc has said that he’ll arrange for another MRI scan in mid November so that a decision as to the next step can be made before the end of the chemo and if we’re going for the liver resection, there will be no great delay (I think you have to have a month between chemo and surgery to give your body recovery time). So might be worth you pushing for a scan sooner rather than waiting until the end. Then get your second opinion, if need be?? And stick to your guns when asking to see the onc rather than his registrar. Really good news about the shrinkage as well even if they couldn’t tell you how much!

Good to hear from you Pinkdove and thank you for your advice about my (obnoxious) colleague. I’ll check those links out as well. I’m reluctant at the moment to go down the official HR route/harrassment etc purely because of the effort/energy it will take but am not prepared to take any more nonsense, so might have to. Things have gone quiet at least over half term.

Like you, I was amazed to hear that they still had my boob lump somewhere ready to be tested this time when they picked up the scondary in my liver in May. Is there a room somewhere with a load of jars in? How do they sort them? And who has the job of looking after them all??? (I also turn out not to be HER2 positive).

You could have done without the stresses of your grandaughter being ill, Wisdens, but hopefully she’s on the mend now. Glad you are out enjoying the sunshine. Hopefully draining off the fluid will also make you feel better.

Lots of love to everybody - sorry if I’ve missed anybody’s important news (brain defnitely doesn’t process info as it used to!)

Kay

68

Hi Kay

Glad you enjoyed your holiday! Hope you’re beginning to feel better now after your chemo - bit of a bummer isn’t it when you have a reaction totally out of the blue.

I just have this vision of all these jars etc after reading your post!!!

Take care and hope you’re feeling better soon.

Pinkdove
x

69

Hi Kay
Just a quick one - off to work.

Bet it was worth it the Amsterdam trip, hope things are a bit better and next chemo goes okay.

W

70

Hi all,
just read all your news - good to catch up. I wrote a long post about my horrible day at chemo yesterday. Arrived 9.15am, left 11.30pm!! a catalogue of cock-ups as usual. But the page had timed out, so i lost it. Too tired to type it all again.
Glad to hear about amsterdam trip Kay, and shrinking tumours Dawn. I found it hard to feel positive at first, when i had good news. Everyone (friends and family) jumped on the news and kept saying how good it was, but i just felt flat. After a week or two it sunk in and now i feel more positive about it.
Had a long chat with Onc about needle ablation for liver - that was in my post too, so i will type it all up again soon, for you all to hear.
got to go and flop on the sofa.
Keep on fighting girls
lots of love
Jacquie xx

71

Hi everyone.

It’s a long time since I posted anything on this site but have dipped into diferent forums over the past couple of years. I am 48 (yesterday) and I was diagnosed in Feb 2005 after finding large lump under my arm. Had mastectomy folowed by 6 x EC and radiotherapy. Initially given tamoxifen but now on arimidex and bondranat. Had secondary in one rib at diagnosis but a year ago following increasing back pain had MRI which showed 2 secondaries on spine so I had radio therapy to spine. since then I have been well seeing oncologist every 2-3 months. Blood checks have always been good. Admitted last week after coughing up blood ( had been away with friends to spain). thought I had a clot on lungs but after CT scan it shows spread to both lungs and liver. I am completeley devastated, feel much worse emotionally than I did after initial diagnosis. Blood picture still normal and have no symptoms at all. My oncologist is on holiday so I wont be seen for at least 2 weeks.

I feel very much alone despite having a very supportive family and lots of friends. I know it’s early days as was only told on monday but I’m finding it very difficult to feel positive. I feel that I dont want to put my husband and children through it all again. i cant bare the thought of my children not having there mam. they’re not little but 15 and 18 but I dont think there is ever a good age. I met 2 friends through the breast cancer care healthy living day one of whom had substantial bone secondaries on diagnosis and we provided each other with so much support. Sadly she died in April and although I still meet the othe firend she hasn’t had any spresd so I cant talk about the same things.

Well I’ll sign off now and pull myself together

Maddison

72

Hi Everyone

This is just a quickie as got busy morning and then off for my 2nd taxotere at 1.30 and am dreading it … hopefully won’t knock me for six again.

Maddison, so sorry you have had to come back on and that you have more spreads to liver and lung. You are in very good company on this thread and we all help each other through it, and give great advice and comfort too if need. Keep posting and let us know how you are.

Kay and Wisdens, hope you are both doing well and I will hopefully be back on tomorrow, depending on how I feel. OH off tomorrow and Friday and playing by ear for the weekend, but suspect he will have to be off to help look after little ones for me. WHo knows. Spent the morning wrapping Jacks birthday pressies as he will be one a week on Tuesday and being a very organised person for once.

Anyway, wish me luck and as said, hope everyone on this thread is doing well, sorry not mentioned you all, but need to get going to pick up daughter from preschool.

Take care and lots of love
Dawn
xx

73

Hi maddison

I am sorry to hear about your recent diagnosis of secondaries. It sounds like you are feeling quite isolated at the moment, maybe it would help to talk to someone in confidence about how you are feeling. If you think this would help please contact our free phone helpline on 0808 800 6000. The team on the helpline are happy to talk to you and just be a listening ear with whom you can share your fears and concerns. The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

We also run a live chat session for anyone diagnosed with secondary breast cancer. This is held every Tuesday evening from 8.30pm to 9.30pm. Here you can share your experiences and feelings with others in a similar situation to you. Details of the live chat can be found from the Breast Cancer Care homepage.

I hope this helps

Kind regards

Katie
Moderator
Breast Cancer Care

74

Hi all,
Maddison, sorry you had to join us, I too was totally devastated when I found out I had liver mets. You will always have a someone to talk to here.
Well good news and bad news for me this week. Firstly, I am off to Amsterdam with my chemo in tow for my 10th wedding anniversary, something I didn’t think I would see back in August. Got my letter from the onc so won’t be accused by Easyjet of being the “chemo” bomber! But saw the onc today and although I thought I only had a couple of weeks left on chemo, she thinks I’m going to be on it till Xmas. Anyway she is going to add up what I have had so far(had smaller doses often because I was poorly to start off with) and see how much more I need to have a full course.
Take care all,
Allie

75

Hi Everyone

Well No.5 chemo done and dusted. Long day though. You all ready for the epic tale … no … oh well, gonna tell you all anyway.

Got to the hospital at 1.20 only to find out that the chemo ward quick blood test machine was broken, and although they called everyone on Tuesday to tell them, funnily enough, never got through to me or left a msg. So had to have full blown blood test and wait 40 mins for that to come back, then another 20 mins or so for drug to be made up. So eventually started about 3pm. Think everyones drips on a mega go slow as took forever to go through and apparently my vein they got the cannula in was a dinky one … so probably didn’t help!!! Eventually got out about 5.15 and got home about 6.10. Long old day and made me feel knackered. They forgot to give me one of my tablets too - oral one - and good job I asked, but they are so nice the chemo nurses!!!

Anyway, not feeling too bad today. Got another 2 different mouth washes, now added one called Difflam and another yellowy one for thrush which has a bit of marzipan taste, so heres hoping, although starting to feel a little bit odd in the mouth. No aches or pains yet, but waiting for them to kick in, but told to take ibruprofen and to also take my Senna tabs to stop me getting constipated. Think I rattle when walk.

My little girl had a fab day out with her best friend yesterday and also went trick and treating with her and came back with a bucket full of sweeties … yummy. My little boy was good as gold to for my neighbour, just feel so quilty when takes so long.

Wisdens and Kay, hope you are both doing ok this week. Not sure if you have anything on with treatment etc, as not really been on line since weekend, as been busy with kids Monday and Tuesday and then yesterday, as you read, was a long drawn out day. So trying to catch up with people today.

Hope everyone else on this thread is doing well too and catch up later.

Take care
Love
Dawn
x

76

Hi Maddison

Really sorry to hear of the spread to lungs and liver. I found out about my liver secondary in June and it’s still a real emotional rollercoaster. I know what you mean about not wanting to put your husband and children through it all as well - it’s really hard to see the people you love most so upset and know that it is because of you. However I’ve 3 children (bit older than yours) and they after the initial shock are dealing well with it and being a huge support to me and my hubby (most of the time - still can’t get them to automatically clear up!). I’m very proud of them all. My youngest 2 were 15 and 18 when I had my primary diagnosis and despite my worries about how it would affect them, they both dealt with it well then - though both assumed I’d be fine eventually so my secondary diagnosis hit hard initially.

You need to give yourself and them some time now to digest this news. It’s a shame you have to wait 2 weeks to see the oncologist as knowing what the plans are helps me feel still a little bit in control. Remaining a little in control helps me avoid panicking about things I think! I’ve talked a lot to friends who weren’t so emotionally involved particularly at the beginning - have you got someone who might let you do that? And I’ve had a lot of support from this site - we’re a little group with liver secondaries, all at different stages and many different treatments…

Do let us know how you’re doing and use us to “offload” on as well if that will help.

Lots of love Kay

77

Hi everyone

Quick update on me. Not having a very good week - temperature keeps coming and going though not as high as the one on SUnday night. They haven’t got back to me with any results so I assume they haven’t found any infection and it must be a virus. Just not sure whether they’ll do the chemo tomorrow (or how I’ll be after!). Have my MRIs booked for nov 13th and 14th so that’s “looming” as well. Keep telling myself how good it will be to hear the b**??? has shrunk and it is now operable.

You both seem to have had marathon sessions at hospital, Dawn and Jacquie. It’s exhausting even without the chemo!

Enjoy AMsterdam, Allie - I thought it was a fantastic place and so easy to get around by tram or canal boat. It’s also so flat which helped me as I can’t seem to go up hill at all any more! You’ll love it I hope - loads of nice places to eat as well.

Hope everyone else is doing ok. Lots of love Kay

78

Hi Maddison,
Welcome, but sorry you’re here, if you know what I mean. It must be very hard waiting to find out what they can do for you. I was diagnosed in March with a primary breast cancer and soon after a liver secondary. I’m still trying to get to the end of my chemo, which started in April, as my bloods have been up the spout. Only one more to go!
As others have said, we’re all in a similar-shaped boat on the secondaries threads so there’s lots of support and you can say anything you need to.
Which brings me to my own little rant - Dawn, how come a long day for you is 4 hours!! It feels so unfair (although i’m glad you don’t have to put up with what I am!). I’m always there from 9am, the quick blood machine hardly ever works, so all the bloods get sent away to another hosp (1 hour plus). After you’ve waited to see the Onc they take you off ‘hold’ and it still takes 1-2 hours for drugs to arrive. Then the staff faff around for another hour or two before giving you anything (I was on a saline drip for two hours, when I thought I was having my treatment!!), and the treatment itself takes 6 hours over-all with the flushes and premeds. I’ve finished at 10pm, 7pm and 11.30pm recently.
Can I come to your hospital please!
Seriously, we’re now writing our second official complaint letter. It’s appalling. All so unnecessary.
Anyone else having similar experiences??
Love to all
Jacquie xx

79

Hi all

Have had some long chemo sessions (though not as long as yours Jacquie!) mainly because they have to give the Taxol and Avastin initially so slowly because of the danger of allergic reaction. It’s now down though usually to about 5- 6 hours total, depending on how busy they are. Finishing late in the evening sounds really dreadful Jacquie particularly if you have been in since 9am in the morning - must be exhausting - and it doesn’t sound as if it should have to take that long at all. They normally manage to get the chemo started where I go, in about 2 - 2 1/2 hours, having done the blood tests, been checked by the Onc and got the drugs. But it is all on the same site. I’d be really annoyed to find I was having saline though for 2 hours when I thought I’d started my treatment! So good luck with the letter - you really don’t need that kind of wait on top of everything else!

I’m feeling better today - they discovered I had a low level UTI so started me on antibiotics on Friday when I went for chemo, which has helped a lot. Feel much more energetic than I have for the last few weeks (despite the chemo) so the infection has probably been lurking there for a while.

Onc was quite chatty on Friday (he’s usually ok but often pushed for time) which was nice. Spent some time talking to me about the MRIs on the 13th/14th and how my tumour markers have come down again, so he’s reasonbably confident the tumour will have shrunk. He also confirmed that I should see the liver surgeon again if the scan does show shrinkage, to discuss whether the liver resection is an option in January. So it’s a case of fingers crossed - I’m worrying about it but am trying to remain positive that there are indications that things are going ok.

Anyway am going to go and potter in the garden in the sun. Hope everybody else is having a good Sunday.

Lots of love Kay

80

Hi Everyone

Just having a quick look through as starting to come out the otherside of the tunnel again … after last tax. Am better than last time though, but as knew what could happen, have been taking it easy (well as easy as I can), OH took daughter to preschool and I have not really been out of the house since Wednesday, apart from shooting to Lakeside Friday morn for another 4th birthday pressie (party tomorrow) and no way was I going near this weekend!!!

Body aching again, but taking ibuprofen and been sleeping like a baby thankfully. Mouth is yuk again though, and got couple of ulcers now I think, but mainly thrush and although using 3 different mouth things, doesn’t seem to do much.

Anyway, enough of the self pity - least I am ok and fighting back.

Hope everyone else is doing well though.

Kay and Jacqui, so sorry your sessions go on at the hospital, and there was me thinking mine were too long. I don’t know how you do it Jacqui, although think I would go mad, as I worry about the people looking after my little ones, as my friend has my daughter and my neighbour has my little boy. I always feel quilty when it takes ages.

Jacqui I think you should complain, as it shouldn’t take that long, not that I am an expert. We are usually in and out in about 4 hours max when the blood machine working in chemo ward. I hope you get some answers.

Kay, I do hope you get answers about your liver resection or ablation, and I am waiting with baited breath to find out, as so interested to see what they say to you. I forget where you are being treated but interested in how you found out about a liver surgeon or was that through your onc? Keeping everything crossed for you and you are my guinea pig … (hope you don’t mind). Apparently my next onc appointment is 19 Dec, but we are trying to change that, as finish chemo on 21 Nov and not waiting til then to see onc and find out whats what. He is on hols again so have to wait til Tuesday to sort out. Still toying with private, but not really sure which way we should go or how to handle …

Wisdens, not heard from you in a while either, hope you are OK and taking good care of yourself. Let me know how you are when you can.

Anyway, hope all you ladies are doing OK and enjoying your weekend.

Catch up very soon.

Take care and lots of love
Dawn
xx