Anyone else with liver secondaries?

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101

Hi all

Having Avastin with the Taxol, Maddison, because I’m not HER 2 positive. Avastin is a really new drug that works in a similar way to Herceptin (I believe) but isn’t limited in the way that Herceptin is. There are a few people on this forum who are getting Avastin but either becaue they are on a trial or (like me) they are covered by private health insurance. There’s a link to a piece about Avastin in the news/information section on the Breast Cancer Care’s home page.

Hope everyone else is ok - all been a bit quiet recently. I’m off to the dentist having managed to chip a tooth!!

Love Kay

102

Thanks Kay.

will ask about Avastin next time I see oncologist as I’m not HER 2 positive either.I asked about trials but she said there weren’t any suitable for me at the moment. Is it expensive as I don’t have private health insurance?
Had 1st taxol and feeling ok at the moment. are having yours weekly oor 3 weekly?

Maddison

103

Hi Everyone,
Anyone heard from Dawn (dm1968) recently? She’s gone a bit quiet. Let’s hope she’s been out and about having a good time, and no time for computer. Let’s hope she’s not overrun with small children and no time for herself!
Hope everyone else is doing OK.
I’ve got my last chemo on monday. Started in April and thought it would only be for 4 months! (don’t say how wonderful it is - feeling weird about it as everyone else is thinking it’s so great. I just feel grumpy and angry as I’ve still got secondary bc and 5 years treatment ahead! herceptin and tamoxifen)
Love Jx

104

Hi Maddison

Glad your 1st taxol was ok. I am having mine weekly like you - 3 weeks on and then one week off.

Avastin I’m afraid is quite expensive - can’t remember exactly how much but I know when it was first suggested to me, it was a case of getting the insurance co to pay or not having it. I’m really lucky my husband has the private health cover through his work, though the insurance co have now said they won’t fund it after next month. My oncologist had wanted me to continue on it for the full year (as people do with Herceptin). I’m just hoping it will have worked well enough with the Taxol to have shrunk my tumour enough to make it operable - have had my scans this week and am waiting for the results next week. Hate the waiting!

Love to all K

105

We must have been typing at the same time, Jacquie! Glad it is your last chemo but I know what you mean about feeling weird about it. I’ve got 3 more and already people are saying how great it is and expecting me to celebrate. I have an overwhelming urge to shout sometimes at them to say that chemo might be nearly over THIS TIME, but it really is only the beginning of a whole load of potential treatments. Plus they all seem to think as soon as I have my last chemo I’ll miraculously feel better and be completely re-energised. Shame it doesn’t work like that!

I’d also been wondering about Dawn (and Wisdens) - really hope you both are ok and just too busy doing nice things to get to the computer.

Love to all K

106

Hello Kay,
I often wondered what would happen if two people posted at the same time…
Glad you understand - I feel pressured by so many friends and family to be positive - like you say, I won’t miraculously be back to full strength on Tuesday! Anything but…
I suppose they are just so desperate to clutch at any good news, they’re all going on about it!
I’m going to watch the mummy diaries again tonight - with the video set as back-up.
Take good care
Jacquie xx

107

Hi Everyone

This is just a quickie - sorry not been on, but alas been in hospital since last Friday, temp went up to 38.2, really bad cough and apparently my neutropenic level 0.08 - well down. Had to go A&E and then taken to a ward. Will tell the rest another time.

Just got home about 45 mins ago, and gotta take very easy, as although all me urine samples and bloods now back to normal, temperature keeps going up and down, but let me out as think I am ok and it is the tailend of my virus. But gotta keep an eye on it … so keep fingers crossed. Missed my little boys first birthday on Tuesday … :(, but OH did bring him in to see me for a while. Opening his pressies tomorrow - ah bless him, good job he doesn’t really understand.

Hope everyone well, have to update me with all your news as too tired to sit and read all the posts.

Catch up tomorrow hopefully, as long as I am ok.

Take care
Love
Dawn
xx

108

Oh Dawn

Poor you! Particularly when it was your son’s birthday - I was hoping that you were “quiet” because you were busy doing birthdays/parties! Hopefully you are on the mend. When’s your next chemo? Hope it’s not too soon.

I’ve had my 2 scans this last week and am in that nasty state of waiting for the results (next Thursday). So am very up and down at the mo - wish I had more patience. So have been doing a bit more work than I’d normally do because the children there keep my mind off things - but then got really tired!

So that’s my news.

Hope you’ve enjoyed opening the pressies with your son today and have some nice (relaxing) treats lined up for the weekend.

Lots of love to all

Kay xx

109

Hi Kay

Next chemo is Wednesday and hopefully will go ahead as long as bloods stay up. Were good yesterday when left hospital, so gonna do everything I can to relax and staying in, so not to tempt fate and get another cough/cold!!! I want it all to go ahead on Wednesday. Got my ct scan date through today - it is on my daughters birthday, 3 December at 9am!!! So am dreading it already and all the horrible thoughts of what the results may bring, but keeping as positive as I can.

I do so hope your scan results come back with good news for you. Which have you had. Hopefully then you can find out about your liver and whether an op is possible. Will keep everything crossed for you for Thursday and please let me know how it goes.

Yeah had good time opening pressies, although my daughter did most of it!!! Videoed it too for him, even though 3 days late. He is walking lots more now too, amazing how in a week he has improved so much. Bit sad I missed it though, but nevermind.

Am doing OK today, not really done anything to be honest. Feel tired, but think change of environment from hospital to home can make one tired, as you never do anything in hospital, whereas at home even if trying to rest, still do more.

Got no plans for weekend, just resting as much as can so things go ok for wednesday. Been told will def. get Herceptin too, but not sure if will start this side of crimbo or in the new year.

Anyway Kay, take care and thinking of you. Sending positive vibes for your scans too … keep your chin up and think positive. Hope you have a nice weekend planned too.

Take care
Love
Dawn
xx

110

Hi Dawn - and everyone else!

Will keep my fingers crossed that you can have your chemo on Wednesday - if your blood count is ok now, I would have thought all could go ahead. Just really pamper yourself!!

Not a good day for your ct scan - does your daughter know that that day is her birthday? Or could you have her “birthday” a day early or late? Do you know how long you have to wait for the results? I wasn’t so bad until I actually had my scans and now I just hate the fact that someone out there already knows what’s happening in MY liver! Logically I know it takes time to look at the scans and write the report and get it to my consultant but I’m not sure logic is in control at the moment.

I had 2 MRIs - one on Tuesday after which they gave me an infusion of a contrast dye. Then I went back on the Wed for more scans - I gather the tumour takes up the contrast and gives them more detail. They have mentioned me having a PET ct as well (to check there’s no more spread!) but nothing has happened about that - I’ll probably find out more on Thursday depending on what has happened in the liver. Aaagh - begin to get panicky if I think about it too much.

I’m having a quiet weekend like you catching up on a few things (my week off chemo last week so am feeling slightly more energetic than I have done for some time).

Take very good care of yourself - really glad that you are back out of hospital and ok. Haven’t heard from Wisdens for a very long time and quite worried about her - really hope she’s ok too.

Lots of love to all Kay

111

Hi to everyone

I am 54 with a loving hubby and family (both kids in the forces and unaware of my situation 'till Xmas!) Friends are also coming out of the woodwork to offer their much appreciated support.

In 2000 I had a mast & recon and just had hormone treatment - Tamoxifen for 5yrs. I have just been told I have secondaries in my liver, lung, hip and eye. As I haven’t had any radio/chemo treatment in the past I feel very nervous about what’s to come. I have been taking Arimidex for 2 wks now and my oncologist wants to give this a chance to see if it will shrink the tumours. I go for a treatment plan on Thur for radiotherapy to my eye and of course don’t know what to really expect and wonder if it will make me feel weak.

Obviously , I am panicky, but feel a little happier having read on these forums that my future might not be as bleak as I first expected. It’s an inspiration to read how effective treatment can be to keep these monsters at bay and of course, you can only really relate to someone who has/is going through the same terrible times, my family and friends feel helpless in that respect.

I wonder if there’s any connection to diet that triggers off the discomfort in the liver - I am going to keep a food diary and wondered if the odd glass of wine puts my liver into an ‘angry mode’. I mostly seem to find the discomfort late evening and can’t get comfortable in bed, plus have had sleepless nights where I find breathing very difficult.

Take care out there, look after yourselves.

Loadsa luv, Jen

112

Hello Everyone,
Welcome to the thread Jen, but so sorry to hear of your recent secondaries diagnosis. As it’s in several places, it must be doubly hard to get your head round it.
Like you say there are lots of ‘old timers’ on here who can give us newbies some hope of a much longer and better life than we first feared. (I was diagnosed with a liver secondary within a few weeks of my primary diagnosis in March). Come here and say what you like. We do understand at least in part.
Hi to Dawn, so glad to hear from you but what rotten luck and bad timing for you to have an infection. Like you say, at least your son is too young to know what day it is - but must have been really hard being away from them as they are so young.
Kay, keep hanging in there, Thursday will soon come. Fingers crossed for your results.
I’ve got my last chemo tomorrow, but dreading it as each time the experience has got worse and worse. Last time I left the hosp at 11.30pm! (Arrived at 9am, didnt start treatment til 5pm) We’ve put in two official complaints about the appalling way I’ve been treated, and my onc has asked for a case meeting with the hosp management as he’s speechless with frustration at it all. We’ve now been invited along too. Frankly i just haven’t got the energy and fear that if we forget/don’t get the opportunity to say ceratin things at the meeting, we’ll have missed our chance. More pressure! On the other hand I HAVE to go, if anyone’s going to listen and change it for others coming after me.
And now the staff know about the complaints, I feel pretty awkward while I’m there. So I’m really dreading tomorrow.
On a happier note, some friends took me to the Country Living Magazine Craft Fair in Islington yesterday. We had such a lovely day and now I feel all warm and glowing about Christmas. Got a few pressies under my belt too. Couldn’t move when i got home though - just sat comatose on the sofa and hardly spoke, You know that utterly wiped out feeling, don’t you? But definitely worth it. I’ll sit there thru chemo tomorrow reliving the conversations we had over lunch and thinking of all the lovely things I saw.
Hope your quiet weekends have been restful and happy
love to all and thinking of you this week
jacquiexx

113

Hi Everyone

Well feeling OK still, so things looking good. Am going to ring chemo ward tomorrow to check blood machine working and to ask about GSCF injections, as think I would like this if means I won’t end up in hopsital on my daughters birthday and if they are unsure, will ring Onc too. Working on having chemo on wednesday then the time that could be more susceptible is the weekend of 1st December … my daughters party and her birthday is on 3rd.

Onto other things apart from me. Welcome Jen to this group, although sure you don’t really wanna be part of it, but I have found this thread so supportive and very helpful with info I would never have known. The ladies on here are great.

Jacquie, glad you had such a lovely day out today, sounds wonderful. And good luck for tomorrow and I so hope you don’t have such a long delay. I think you are absolutely right to complain and glad to hear that your onc is behind you on this. Go fight your corner, as you deserve to be treated so much better and there is no excuse for keeping you waiting around like that.

Kay, I know that you are worried but try not to stress. Easier said than done, hopefully your scan results will be good news and you can move on and find out about ablation or resection. I have no idea what the difference between a ct scan and a pet ct scan is, so can’t comment on that. At least you only have a few more days to go to worry.

I too am really worried about Wisdens as not heard from her for so long. Think will start a thread to see if she responds.

Anyway ladies, chinese arriving shortly. My little man not behaving himself going to bed tonight, so need to sort him out.

Take care all
Love
Dawn
x

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Jen(ferbee), I think I am in a similar situation to you (secondaries to spine, lung, liver, but also ovaries, lymphs) but I too have a problem with my eye, due to some traction nerve pressure. I am may or may not be having raditherapy for the latter, and would be interested to hear how it is for you and what they are planning. I’m very confused about options! In the meantime I am having a lot of steroids for the eye (and hate the side effects!).
I would really appreciate hearing about your treatment plan when you know it

best of luck Susie

115

Hi everyone

Hi Jen and welcome to the site. I have only been part of it for a few weeks but have already found it of great benefit. I to have great family and friend support but it’s only those who are going through the same things that can really understand. I had radiotherapy following surgery and found that at times I was really exhausted but I think it will depend on how many lots you need to have.

Dawn hope everything is ok for wed. take care of yourself. You must have found it hard to miss your son’s 1st birthday but I’m sure he enjoyed your celebrations. If by any chance you do miss your daughters you can always have another party and in that way she will feel special.

Kay - thinking about you regarding scans. The waiting is the worst thing. Something about control I think. Found out about price of Avastin as article in local press about lady not being funded for it - £45,000 per year plus cost of scans. Will ask about it anyway but not very hopefull. Do you have joint pain with the Taxol as I’ve got really bad pain across shoulder blades this morning. Going to have hot bath to try and get some relief and then go out for lunch with a friend.

Jacquie - the craft fair sounds lovely. I love that type of thing. good luck for tomorrow. Try and not worry too much about your complaint. Having to wait that length of time is not acceptable and I’m sure the staff in the unit think that too. Sometimes the only way to get things changed and to draw attention to problems is through the complaints process. (working in the NHS I know this 1st hand.) Anyway Just realised you are probably there now so hope it went well. Need to celebrate last chemo!!

How is everyone’s other half doing? fell out with mine this morning. He developed asthmatic symptoms following my initial diagnosis which reappear at times of stress. after a very weezy night I had to shout at him to go and see the gp. I now feel awful but don’t seem to have the emotional strength to cope with his problems. I want us to be closer then ever but a times we seem so apart. Sorry to go on but not sure which way to tackle things.

Anyway going for my bath now.

Love Maddisonxx

Off for m bathe now. 2nd Taxol tomorrow

116

Hi all

And welcome Jen and Susie to this thread. I’m sure you would rather not be part of this “gang” but hopefully you will find it a support - not sure whether you are recently diagnosed like Jen or not, Susie. Didn’t even know you could get secondaries in the eye. Hope you feel more confident, Jen, after your appointment on Thursday and you get the information you need.

Hope the chemo went ok today, Jacquie and Maddison. Was your case meeting today as well, Jacquie? It sounds an absolute nightmare - just what you don’t need at the moment! Have had some joint pain, Maddison, with the Taxol but fairly minimal. The only time I’ve had bad aches and pains is each time after the Neulasta injection (have it every 3rd treatment because of poor white blood count). The onc prescribed an anti-inflammatory (Voltarol) to help with that.

Glad you’re continuing to feel better, Dawn. And think asking about the GSCF injection is a really good idea- you really don’t want to miss your daughter’s birthday.

My hubby has found my diagnosis very difficult to deal with at times, Maddison. He initially took the news really badly and was in a very black mood for several weeks (and we had lots of “fallings out” then). He’s never been the greatest communicator and has found it very difficult to talk about how I might feel about things, and indeed how he feels about it which doesn’t help the “closeness” factor. However he is trying and I think this waiting for the scan results on Thursday has had a positive effect in that he really seems to have taken on board how the uncertainty of it all affects me and how I need him to be calm and reassuring during it without being falsely over-optimistic. So the last few days we’ve had a few more honest discussions as to what the future might hold and how we both feel about it. I think he just needed lots of time and space to deal with it all in his own way and come to terms with his fears etc. So still early days for both you and your OH.

I do know what you mean though about not having the emotional strength to cope with other people’s problems - you do just need them to get on and deal with those problems without your support because you cannot give it priority at the moment. And if he’s keeping you awake at night with his wheezing, he definitely needs to go and get it sorted - for your sake if not his own!

Did you start a thread for Wisdens, Dawn? Hopefully she’ll be in touch soon.

Lots of love to all

Kay xx

117

Hi all,
Well good news for me this week, I have been on weekly chemo and the continous pump since 15th Aug and saw onc today who promises me that my last dose will be on the 12th Dec. I won’t know what do do without my little pump! Going to give me a complete break off all treatments over Xmas/New Year and see how I go. Probably going to start me on hormone therapy at some point. They are going to keep a close eye on me and she promises she has plenty of treatments up her sleeve to keep me going, really looking forward to them! My bloods are really stable and tumour markers down so really pleased. What i’m really struggling with is planning for the future, do I carry on the business, planning holidays etc. OH wants to buy a new car and I’m even struggling with this decision. Well enough about me moaning away!!
Welcome to Jen to our gang, I hope you get as much support as I’ve have from it. I have liver mets and get some abdo discomfort, try not to drink too much and also large meals can upset it
Dawn -glad you are out of hospital and doing ok
Kay -good luck with your results tomorrow, got my fingers crossed for you
Maddison- how is the taxol going?
Jacksy- hope your last chemo went ok, keep going with the complaints I think you’ve been treated shockingly.
i hope I haven’t forgotten anyone
Allie

118

Hi Everyone

Well last chemo for now done and dusted. Feel OK for now too, but am sure aches and pains etc will kick in shortly. Got a new tablet form drug to take for my oral thrush in mouth and also something to help with my Senna for my constipation that I get. So hopefully that will all work.

Think have told you got CT Scan on 3 December (daughters 4th birthday), then seeing onc on 12th December, and am going to try to see if can start Herceptin on 18 Dec, as just wanna keep things going and know that I am still being treated, and will worry about it all over crimbo that things going on inside that shouldnt be. So am going to write a letter to my onc tomorrow asking him if he can organise it for me to start on 18, but not going to hold my breath. Also they are going to organise heart scan before herceptin starts, so we shall see. No really sure how I feel about finishing, as not overly excited just strange feeling and little worried too.

Jacksy hope that your last chemo went well too and you are not suffering any side effects. Let me know how you are.

Kay, wot can I say, good luck tomorrow and am wishing and hoping that everything is good news for you, and that you get the ansas re your liver that we want to hear. Waiting with baited breath to know what I might expect. Take care and try not to worry too much tonight and let us know when you can.

Allie, go for it all if I was you, carry on living and book your holiday and get your car, life is too short and even without this blasted disease we don’t know what the future holds, so live life for today and enjoy. We are planning on going to Florida hopefully in March/April to Disney, just depends on how much insurance would cost for me, but hopefully ok. Something to look forward to after this years crap, and cancelled holidays. Hope your little one is OK. I am doing fine now after my hospital, hopefully won’t happen again, as would then be over my daughters 4 birthday and can’t face missing another birthday, break my heart. They only gave me 80% today though, as apparently taxotere builds up, so the last two doses were a bit too much for my little body!!!

Maddison know what you mean about the OH. Me and my OH have few squabbles, but think it is hard for them to understand what we are truly going through and the emotional rollercoaster. My OH sticks his head in the sand too at times and doesn’t want to contemplate the “what ifs” and “what can happen”, but hey ho, we get through them and move on. Hope your Taxol went OK today too.

Jen hope you are doing OK too and anyone else that I have missed. Hopefully be on line tomorrow and Friday, as long as aches and pains don’t kick in too much.

Kay, still not seen response from Wisdens and am REALLY REALLY worried about her. Gonna check on bccpals as not sure if she is on that site and see if anyone has heard from her.

Take care all and sending lots of love. Bath time for sprogitts!!

Love
Dawn
xx

119

Hi Everyone,
Dawn - great news that you had it today and it’s all over! (well, this phase anyway!). I’m starting to feel groggy and achey now, so flobbing around feling a bit sorry for myself. I know it’ll last over the weekend and I’m no good at resting quietly!
Can you drink and have a celebratory glass of something? I’ll have to wait a few weeks as just a few mouthfuls make me feel really sick with the chemo.
You’ve got a busy time between now and Christmas. My onc agreed to let everything wait until after Xmas - eg CT scan, muga scan (heart) and starting on Tamoxifen, so I can just concentrate on getting my strength back.
I got home at 9pm on monday. I was taken off hold at 9am (i was allowed a blood test on Friday to cut down the delays) but it still took 3 hours for the drugs to arrive on the ward and another hour before the treatment started! Then for some reason it all took 7 and a half hours!! i was just beyond caring, and so glad to be getting the last dose. Still waiting to hear when the ‘complaint’ case meeting is.
Allie, I know what you mean about knowing how to live. I’m planning on going back to work in Jan but keep wondering if it’s the right thing to do - I could live to regret it as a complete waste of precious time and energy if things didn’t go well for me in the future…on the other hand, you can’t just sit around in fear, life’s to be lived!
Better go - running out of energy. Hope everyone else is OK today
Love jacquie xx

120

Hello again to everyone and thanks for the big welcome to the ‘club’ and thanks also for your concerns.

I was supposed to be having a treatment plan for my eye tomorrow - big mix up - the onc wants a 2nd opinion before starting treatment so that’s been cancelled for now. Have now got appt with eye consultant on Mon so will have to wait and see ('scuse the pun) what’s what. My sight hasn’t been affected so far - just have flickering lights and a shadow, as I have diabetes I can live in hope that it’s something as simple as that.

Thanks Allie for the advice about food and drink, I have started cutting down on my evening meal and don’t know if it’s that or that my liver has settled down since the biopsy, but I have had no discomfort for a couple of days. Tried a glass of wine tonight and it tasted horrible (might be nature telling me not to bother).

I feel a bit unsettled about my treatment (Arimidex), because at least the first time round I felt comforted that my alien had been surgically removed.

Well girls, must go and join my snoring OH and try to get some zeds myself, nite, nite and please take care.

Luv to you all, you’re an inspiration, Jen x