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Anyone else with liver secondaries?

juliet66
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Re: Anyone else with liver secondaries?

Heres hoping Kay!!! J x

Jacksy
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Re: Anyone else with liver secondaries?

Hear hear Jane. That's a nice surprise Kay.
Jx

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Re: Anyone else with liver secondaries?

Kay so hope that the RFA option may be there for you.

Jane x

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Re: Anyone else with liver secondaries?

Am now quite confused (easily done at the moment) - so when is it a tumour and when an attenuation? Feeling lazy so asking you who are now knowledgeable rather than googling!

Anyway...."possibly smaller" and "stable" sounds good to me, Jenny. Pleased for you - here's to a very good summer.

As one of the original liverbirds, feel I can say that no-one should feel they "shouldn't" post on this thread, Julie. It's open to all and everyone is very very welcome, whether they have secondaries in the liver or not.

As for me, I saw the liver consultant yesterday who completely amazed me by saying that he thought RFA might be possible. They ruled it out last year after the failed liver surgery but it sounds as if things have moved on with the technique. It's not definite and he wants to discuss it at his team meeting on Monday - it would actually be the consultant radiologist who would carry it out. So fingers crossed. Am trying not to get my hopes up but can't help but feel that a new option might be there.

I'm fudging the issue about work too, Kathryn. Like you don't want to be at home at the moment but haven't really come to any decision.

My dinner has just arrived - youngest daughter home and she offered to finish the cooking! Love to all Kay x

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Re: Anyone else with liver secondaries?

Aha! I've done some homework (late as ever it was) and found that 'attentuation' refers to density. Always read the small print.

Jx

juliet66
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Re: Anyone else with liver secondaries?

I know I should not post on here but Jenny I like you!!!

I also like the sound of attenuations!!!Sounds like improvement to me.
Julie x

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Re: Anyone else with liver secondaries?

Hi Jenny,
after asking Ian what attenuations meant(he's my google)I too think it sounds very nice indeed. Enjoy the summer, I am feeling a bit better each week, so fingers crossed for us all.
Love Debsxxx

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Re: Anyone else with liver secondaries?

Attenuations and stable sounds very nice indeed Jenny...here's to a good summer for you...

Jane

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Re: Anyone else with liver secondaries?

As a liver secs girl (though not usually very participatory on this thread) I thought I'd put my scan results here. I have decided I don't have 'tumours' I have 'attenuations' (as this is what is written up on my scan reports) Mine are 'possibly' smaller than on the last scan so we are calling this stable. I am very surprised as I could not find any evidence for good results on gemcitabine and I haven't been feeling particularly wonderful. So at least I know I can get through the summer holidays in one piece now.

Jenny x

Jacksy
Member

Re: Anyone else with liver secondaries?

Hello you darling girls,
I've been away from the site for a bit, but have just caught up with Cathy, Kay and Katie's news. Can't think of an original word to say that sums up how pants it all is. What a horrible shock, things have changed so fast. Kathryn, I'm glad to hear your bits of good news, but there always seems to be something else to cancel it out! Kay I've been thinking about you lots and wondering when you would hear your results. Really hope RFA is an option for you. Cathy, I hate to think of you in hosp for 3 days and nobody here knowing, and what a lot of aggro trying to get someone to listen to you. Hope you'll all be able to get to the meet up next week, so we can give you a real-, as opposed to a cyber-hug.
Hi to everyone else
Lots of love
Jacquie

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Re: Anyone else with liver secondaries?

Hi Kay
with the bone mets I think yhey have increased in size and number but they don't give me any symptons as yet , touch wood! I'm struggling a bit about what to do about work, especially with the prospect of another 6 weeks or so of Taxol. They have allowed me a lot of flexibility up to now and I don't really want to get signed off and be at home at the moment, so will probably carry on trying to fudge the issue!
With the Vinorelbine it was every 3 weeks and that was when I had the port put in. Interested to hear how you get on with the consulant about RFA. I forgot to ask about it, I don't know how feasible it would be for me as my lungs are probably more of an issue than the Liver but it may be worth asking next time
Love Kathryn

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Re: Anyone else with liver secondaries?

Kay,
Just to say I have found vinorelbine, pretty easy to cope with. Especially since I changed to tablets and the neulaster injection on day 8.
I am due to have 11th cycle next week, if they decide to go ahead with it, due to lymph node in neck still growing.
Have not been well since I came back from wedding, UTI and chest infection and pain in side. Went to A and E to have it checked out, they said just pulled muscle. 6 days on am still not right, though improved and finished antibiotics on Monday, so expect I will end up with scan sooner than later.
Marmite x

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Re: Anyone else with liver secondaries?

Hi, Have date for my next CT scan. 19th May (7.10am!) Should get the results during my next chemo on 26th. The scan is being done 3 weeks earlier than planned as onc wants to check my lungs because of breathlessness I have been experiencing. May be too early to tell if treatment is working, but you never know. Snoogle x

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Re: Anyone else with liver secondaries?

I think that's good news, Kathryn - as you say there always seems to be a "but" though! It does sound as if Taxol and Avastin is working well for you for the liver and lung mets - did they give any indication of whether it is more bone mets or increase in size? Not sure from your post.

I am still working but had a long session with my boss yesterday debating what they could do to support me or whether I should just "give in" as you put it, Cathy, and accept that I can't work any longer. Still feel work is good for me and helps me feel I am living out the rest of my life but if I do continue, I definitely need to get a better balance.

Glad to hear you found Vinorelbine very do-able, Kathryn. My onc certainly seemed to think I would cope with it well - but he does have a bit of a different take on these things from me! I've managed to work through chemo each time so far though struggled with the later cycles of Taxol and Avastin. Did you have the Vinorelbine iv, Kathryn, every 3 weeks?

Must go finish dinner.

Love to all

Kay x

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Re: Anyone else with liver secondaries?

Well my news is that I saw my oncologist this morning and the Taxol seems to have worked well on the pleural effusion in my right lung and the lesios have all but disappeared and the liver ones reduced both in number and size and only a bit of fluid round the liver and pelvis,but, (there is always abut)the radiologist thinks that the slight increase in the tumour markers is because there is an increase in the bone mets although I have no symptons.
Anyway oncologist and chemo nurse view it as good news and the plan is that I will have 2 more cycles of Taxol and Avastin which will take me to9! he will scan me again and then look at another hormone and biphosphonates.
Kathy, I know how awful it is , this is very similar to my progression last september, i'm sure the sensible thing is to take a couple of weeks to think about things and try to make some sense of what to do. If it's any help to you and Kay I found Vinorelbine quite manageable and worked through it probanly more than on Taxol but it didn't take very long so I could get some work done on the days when I had treatment.
Sending you both lots of hugs
Love Kathryn

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Re: Anyone else with liver secondaries?

Well just typed a long response and voila it disappeared into limbo.

First - thanks to everyone for their good wishes, I am just really knocked down at how quickly this happened over the last month. My oncologist seemed genuinely suprised as well when I discussed with him.

I am going to start vinelrobine (snap kay ) in the next few days, like you Kay I don't know what to do about work, feel I am at a tipping point and should give in and then part of me thinks why should I? I am being signed off sick for next two weeks and then will think about things- today is first day I feel half human after being let out of hospital on saturday.

Why won't they listen? I think this whole hospital admission could have been avoided.

love to all
cathyx

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Re: Anyone else with liver secondaries?

Kay and Cathy

sorry that your results were c**p, hope that they can put a plan in place that gets things back under control for both of you ASAP.

Fiona

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Re: Anyone else with liver secondaries?

Hi all

Cathy - really sorry to hear you have had liver progression as well AND had all the run around with the UTI to cope with too. Why oh why don't they just listen to us? Hope they took good care of you in hospital. Do you know yet what chemo next or when you start? And are they going to do anything about the fluid or do they expect that disappear if the chemo works well?

I am to see the liver surgeon on Thursday about the possibility of RFA, but don't hold out much hope for that (since it's already been ruled out once). So it will probably be more chemo for me - vinorelbine is what he has suggested next.

Trying to make decisions again about work but just can't. Don't feel really able to make any decisions which is very unusual for me!

Take care. Kay xx

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Re: Anyone else with liver secondaries?

Hi Kay & Cathy

I am so, so sorry to read about both your results. It is absolute pants, to say the least, and I can only begin to imagine the wealth of emotions evoked. I hope your treatment plans kick this friggin cancer ass - hard!

love
xxx

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Re: Anyone else with liver secondaries?

Hi, not posted in a while on this thread. Just catching up this morning. Sorry to hear that Cathy and Kay are having such a bad time. This disease really does throw you into a different world. With love and best wishes to all. Snoogle x

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Re: Anyone else with liver secondaries?

Hi Cathy and Kay - so sorry you are both having such a bad time - total crap - just hoping things can be sorted out - much love , jayne x

dm1968
Member

Re: Anyone else with liver secondaries?

Hi Cathy

So sorry to read your news too and about how long it took you to get noticed. So shit for both you and Kay after doing so well. Fingers crossed that the next course of treatment that you both have works for you both too.

Dunno really wot to say, just really sad that you are both back in that black hole, and hope that you both managed to claw your way out as soon as possible.

Love and hugs to you both.
Dawn
xxx

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Re: Anyone else with liver secondaries?

Hi Kay & Cathy I am so sorry to hear this s****y news again this is what I hate so much about this disease it has this habit of kicking you in the back side everytime you think things are looking up.
this is the bit that is so hard to cope with the roller coaster ride.
Hopefully they can get it back under control again
lots of love CAroline

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Re: Anyone else with liver secondaries?

Hi Cathy,
so sorry to hear your news. None of us here on the secondary section or in fact any other part of the forum give a uck about pink bravery points!
In fact the tide is turning and I bet by the end of this year we will have started to make people think before they come out with the bravery clap trap.
Hope you are soon feeling more able tp cope with the sh.t that you are having to go through. Sending massive cyber hugs to you and Kay.
Love Debsxxx

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Re: Anyone else with liver secondaries?

Cathy and Kay, I am so sorry to hear your news too - particularly as both of you have had good scans/results etc lately, just goes to show how quickly things can turn around 😞

Yes, agree Jenny, Breakthrough, are you listening???

Lesley x

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Re: Anyone else with liver secondaries?

Cathy and Kay, I am so sorry to read your news. I know there is nothing I can say to help, but I'm thinking of you and hope you get a good plan of attack to work with soon.

Breakthrough need to be reading this kind of thread if they want to know what the uncertainty of breast cancer is really like. The b****y pits.

Jenny x

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Re: Anyone else with liver secondaries?

Me too...just so sorry to hear you've had such a shitty time Cathy. And Kay too.

Jane x

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Re: Anyone else with liver secondaries?

Oh Cathy
so sorry to hear this, I thought you had a good report from your last scan. It really is the pits, thinking of both you and Kay. Are you to go back on Taxol/Avastin?
Love Kathryn

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Re: Anyone else with liver secondaries?

Hi All

Well just to add to the list of woes, I am not in a good place, have spent a couple of days in hospital with a UTI that as gone to kidneys, diverticulitis and you guessed it liver progression, including for the first time some fluid around the liver. Tumor markers have jumped wildly over last 6 weeks and its back on chemo next week.

I am so angry about this for a number of different reasons, have had a ridulous run around from the GPS 3 visits being sent away with different antibiotics that didn't work, the hospital, where no one really listened to my feelings of unease and discomfort despite me going on at 2 separate occasions and wham I then end up being taken in sobbing and being given diamorphine for pain relief. Really I am angry that faslodex was useless and basically straight back on to chemo.

Anway have debated posting this as its pretty downbeat and loses me pink bravery points in competition (see other thread re Breakthrough) but If I cant be honest here where can I be?

Dawn -hope all your scans turn out OK, it could well be nothing, its probably not a bad idea to get a bone scan in anyway.

Kay - sory to hear your news, what can i say but i know how you feel.

best to all
Cathyx

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Re: Anyone else with liver secondaries?

Oh Kay - so sorry you have had this news -i think its awful that we cant see whats going on inside - and have to wait for results -I am really unclear about how they "read" the liver scans as it does not seem precise - mine are innumerable - but every now and then she says Oh, that one could be scar tissue or something..... are you carrying on with the same treatment

dm1968
Member

Re: Anyone else with liver secondaries?

Kay, I am so so sorry to read this. i have not been on for couple of days and just caught up and this was the last thing I was expecting to read, especially after you being NED back end of last year. I hope that you get good news from your surgeon, are you seeing the same one again, that I went to see too?? Hopefully he will be able to give you some good news and something can be done.

I hope that you are starting to get your head around it, although very early days and you prob need to know wot is happening next and wot your surgeon says.

Sending you lots of love Kay and big hugs too.

Take care
Dawn
xxx

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Re: Anyone else with liver secondaries?

Kay, So sorry to hear your news. I know how gutted you must feel, having been reasonably well for a while. Hope they can sort out a new treatment which may help.
Thinking of you.
Marmite x

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Re: Anyone else with liver secondaries?

Oh Kay, I am so sorry to hear your news, it is such a blow whenyou get this news and when you had been hoping that things were being held in check. Have you spoken about what your treatment options are?
Hoping you can get a plan in place soon. Will be thinking of you
Love Kathryn

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Re: Anyone else with liver secondaries?

Hi Kay
really sorry to read this, have they said what treatment they are going to do? No one can blame you for feeling low, the uggers.
Love Debsxxx

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Re: Anyone else with liver secondaries?

Well, unfortunately, I have been proved right - my tumour markers are indeed a good indicator of what is happening. My scans show 3 new tumours in the liver and a further suspicious area which is almost definitely a 4th tumour. Feeling very low tonight.

Kay

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Re: Anyone else with liver secondaries?

Thanks Mal. I too (as someone with mets and currently waiting for scan results) find it hard to get my head around how quickly things can go wrong for us, despite having now "seen" it happen with so many ladies with secondaries.

I have been thinking of Gill since your post and about how she would have liked to have come to one of the London meets - indeed intended to. I would have liked to have met her face to face rather than just through the forums.

Must be particularly hard for you at the moment having been through treatment yourself and at that stage of wondering what the future might hold for you. So take care of yourself as well - and fingers crossed that you never have to join us on the secondary forum. You are always welcome to "pop in" though.

And best wishes to Tony, as well. I can't think of the right words at all but I (and my husband) are thinking of him.

Kay x

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Re: Anyone else with liver secondaries?

Thanks ladies. I'll pass on the messages to Gill's husband Tony.

Gill was a lovely lady who had been battling BC for 10 years. What I can't 'get my head round' was that her scans showed her in remission only 3 weeks before she was taken in hospital.

As I'm not a mets girl(not yet anyway), just finished my treatment for a primary six months ago, I am sorry for intruding on your thread but would like to add what gutsy ladies you all are, and hope against hope that there's a cure for this dreadful disease in-the not-too-distant future.

Take care and keep well ladies.

Mal

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Re: Anyone else with liver secondaries?

Thanks Annabel

Anna_BCC
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Re: Anyone else with liver secondaries?

Dear All

We are all sad at Breast Cancer Care to hear of another death to breast cancer and offer our condolences to all Gill23 family and friends. Our helpline is open Monday to Friday 9-5 and Saturday 9-2 for support and to listen if you would like to talk. Outside of these hours Samaritans are always available to anyone who would like an ear to talk to.

Best wishes
Annabel

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Re: Anyone else with liver secondaries?

Gutted really upset too much ucking hit news at the moment .
Should we do a new thread for her?

Gill so sorry to lose another cyber friend to this disease, sorry we never managed that London meet up.
R.I.P.
Love Debsxxx

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Re: Anyone else with liver secondaries?

I had noticed that Gill23 hadn't posted recently. Am sorry to hear this news - it is indeed such a shi**y disease.

If you are in touch with her husband, Mal, please pass on my best wishes.

Kay

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Re: Anyone else with liver secondaries?

This is very sad news, I'm so sorry. Thank you for letting us know maltomlin.

Thinking of her husband and family

Lesley x

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Re: Anyone else with liver secondaries?

Thought I would let you know that I had a message from the husband of Gill23. She died last week-end after a long spell in hospital. She hadn't posted on here for a couple of months.

This shi**y disease!!!!

Mal

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Re: Anyone else with liver secondaries?

Kathryn, that's great news about your tumour markers. Mine were up in the 900s and at the last count were in the 600s. Your reduction gives me hope that mine may come down even more.

Deirdre

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Re: Anyone else with liver secondaries?

Kay
Glad you got your scan over and done with! Mine is next Thursday, I always dread the hunt the vein, I have got the name of the person in the CT dept who can usually get a vein and sit like Lady Muck with my heat pad insistng that she does it! Keeping fingers crossed that you get good news. My markers had gone from 1200 to 270 and are now 300 ,my chemo nurse thinks it could just be a deviation and I am much better than when I started Taxol/Avastin. I just hope it is still working and I can stay on Avastin. Have one more cycle of Taxol to do.
Hope everyone has something good planned for the weekend. I am off to Suffolk and am doing a 14 mile walk on Sunday as part of my Ribbon walk training. Hoping for some meals out/ pub lunches sunshine and sea!
love Kathryn

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Re: Anyone else with liver secondaries?

Really pleased for you Debs - I found taxol and avastin hard going so am sure you will make the most of the break.

Had my CT this morning - they played hunt the vein and after attempts by nurse and doctor, ended up having to get the consultant out of surgery! He arrived duly gowned up and was successful on the 2nd attempt. Lucky my tan covers up the bruises to some degree! I'm just glad scans are over.

Really am hoping that the increase in markers is indeed insignificant - certainly am not worried about them being in their 50s, but more about this trend upwards. And at least I know it can't be really really dire with them being relatively low still.

Hope everyone has something good planned for the long weekend.

Kay x

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Re: Anyone else with liver secondaries?

Kay - 50 is still relatively low - especially compared to your high of 500. It could be something like a cyst or ulcer that causes this sort of increase. Fingers crossed.

Debs - you've done great on the taxol avastin combination. I am sure you will feel much better on your break - I compared tax/avastin to death by a hundred cuts. Nothing actually life threatening (well, apart from the port infections) but pretty horrible and annoying nonetheless.

Here's to good scans for everybody.

Deirdre

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Re: Anyone else with liver secondaries?

Hi everyone,
just to say I hope you are all doing well.
Kay... hope scan went o.k. and that you will get good news, fingers crossed the uggers have GONE!
I didn't post my scan results on this thread I put it on the other thread but some of my uggers have shrunk and others have gone, just vanished so the taxol/avastin has done it's job. I am on chemo break until they grow back (I hope they don't) just having pamidronate and avastin.
Love Debsxxx

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Re: Anyone else with liver secondaries?

Pleased that you've had some more encouraging news, Maddison. It is so complicated though, isn't it? Hope your CT scan went ok yesterday.

My CT is tomorrow and then it is a matter of waiting for the results. Thankfully Deirdre, the tumour markers are still really low so whatever is happening it isn't an emergency. Mine were 500 plus before capecitebine and then came down to (at their lowest) 25. Over the last 3 or 4 cycles they've crept up each time between 5 and 10 points (so nothing significant each time but the trend is definitely up) and they are now in the 50s. If they had only dropped to 50 I wouldn't be worried (I don't think) but it is this fact that they are now just heading steadily (but thankfully slowly) up.

Have you had your scan yet Kathryn? Lost track a bit, I'm afraid.

Hope all our scans prove to be ok. Lots of love K

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Re: Anyone else with liver secondaries?

Hoping that everyones scans bring good news in the next week. 3 monthly scanning doesn't give much time for relaxation!

Fiona