liver secondaries

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21

Thank you all for the liver ablation resection info -must say it is all scarey and sometimes makes you feel really low but you are all so supportive and I need to have information so I can make decisions and speak to Onc and get answers from him… even if they are ones I’d rather not hear. I am a bit down and I am onto no3 vinoralbine and I don’t think it is working as I feel like sh 1 t…

Just had fab wkend with friend visiting…known her for 50years… caught up with lots of gossip etc but now she’s back home… maybe separation blues.

Dawn just love those babies they will keep you going just one step at a time… a big hug from me

22

Hi All

Thanks for all support and info too, as it does help, even if sometimes scares us or makes us feel down - but think this is usual anyway. I know my decision about it all, if available its a Yes, if onc says no, then going to seek 2nd opinion. My life is worth too much to just take a straight no, as I want to be here for my babies.

Wisdens thanks for your input. Know what you mean about feeling down, although put on a brave face to friends and family, some days so hard to keep smiling. But for my babies I do. And yes they do keep me going, as have no choice anyway, but they just make my heart melt when I look at them. Got my 3rd FEC on Wednesday, so hoping that goes OK, then onto taxotere …

I would love to keep this thread going with everyone’s input, so we all have the info we need and can get ansas hopefully without being fobbed off. Good luck to us all and lets fight this together, as you all keep me going and give me the strength to fight, along with my little ones.

Take care
Lots of Love and a huge amount of cuddles to everyone
Dawn
xx

23

Hi

Good to hear you sounding more cheerful, Dawn - I was just feeling guilty because I know some people don’t like statistics at all and if I’d thought, I could have warned you that they were there! I’m just also really emotional at the moment as I wait for my MRI results. I keep telling myself the b??*** will have shrunk but am quite scared it won’t have done. Hopefully the results tomorrow will be positive though and I’ve also reached half way with the chemo (9 down, 9 to go) so I may be on a real high tomorrow evening! Might even break open the champagne!

Your children sound adorable. I work with preschool children (I’m a speech and language therapist) and they are just the best medicine available. I can’t worry too much when I’m with them as they just demand all my attention but in a really great way. One was dancing a power ranger through my wig this morning which he thought was hilarious as my wig slipped over one ear - we couldn’t stop laughing!

I am in the south east - Guildford area - and have seen the liver surgeon whose website it is - Prof Karanjia. He seemed really nice and approachable (apart from telling me it wasn’t operable at the mo, which was hardly his fault) and he spent some time talking through things with me. I too have private medical insurance through my husband’s work, so saw Prof Karanjia at the Nuffield Hospital in Guildford, though I think he might work at some other hospitals as well (certainly works at the Royal Surrey in Guildford).

I think the idea of keeping the thread going is really good as so much is going on for us all and sharing that info can only help us keep on fighting.

Take care - and cuddles all round!

Kay x

24

Hi Kay

I know the area well … dont live there now … I shall definitely ask about treatment other than the old chemo like you waiting for results… hope yours are ok tomorrow best of luck…

25

Hi Kay and Wisdens and everyone really

Just had 3rd FEC today, so half way through now (got 3 x FEC and 3 x Taxotere), so next session is in 3 weeks and starting taxotere. Am OK though, and hopefully will be like the other two with no symptoms. Hope you are feeling a little better and hopefully your MRI will be brilliant news and tell you that tumours have really shrunk. That is what I am dreading too, when told need scan to see how liver responding. Scary isn’t it, cos I worry that nothing will have changed … but gotta think positive and think they have at least halved. As I said Kay though, you mustn’t feel guilty because it is better for me to know as much as I can, so can at least go armed when seeing Onc and know a little of what I am talking about. As I have to admit, was very ignorant about bc and secondaries before all this happened and I am still a novice as not really sure about that much still.

Speech therapist - wow - we are in the process of waiting for Sophie to be assessed, as she doesn’t pronounce all her words properly, substitutes things like S, F, V, J with Ds. Jack will grow up thinking he is called Dack. We had her hearing checked and that is all perfect, so now waiting for appointment for speech therapy. You job sounds lovely and must be so rewarding.

I am not too far from you, prob. about hour or less, not sure. I live in Essex, right near Lakeside Shopping Centre, maybe you know it.

Good luck for tomorrow and let us know how you get on. Will keep everything crossed for you thats for sure.

Wisdens hope you are OK today too and good luck if you are waiting for results too.

Take care all
Lots of Love
Dawn
xxx

26

Hi all

Been a bit down the last few days because though the MRI showed that the tumour had shrunk, the onc seemed really disappointed it hadn’t shrunk more. So he wouldn’t say for definite that the liver resection is an option and even said he would want me to have a PET scan in Dec to check that no more secondaries have developed elsewhere. If they have, I don’t think they will contemplate the liver resection (because “it’s such a major operation”). So I actually feel less certain about the operation than I did before I had the scan!!

And to really depress me, all my nails have started lifting from their nail beds - side effect of the Taxol evidently. And with another 9 sessions to have I can’t believe they are all going to stay attached. Aaaaghh…

On a more cheerful note, yes Dawn my job is lovely and incredibly rewarding. When I’m there I (almost) forget about being ill and so long as I’m not doing paperwork, always feel cheered. I work in a specialist centre for children with profound but specific problems with speech/language (ie everything else is developing as normal), so I really do feel I can make a huge difference to them. Used to work in clinic though and I’m sure your clinic therapists will be able to help Sophie. Can’t remember how old she is but most children under about 4 1/2 have difficulties with “j” so Jack will probably also call himself “Dack” for ages!! My youngest (who is now 20) had lots of speech difficulties and called herself Dafrin (for Catherine) for years. And despite all that I would advise as a SLT, I couldn’t stop the other 2 nicknaming her “daftest” (they still call her that occasionally) - luckily it doesn’t seem to have affected her psychologically! All part of sibling rivalry I suppose.

Anyway sun is shining and I’m determined to enjoy the day. Going to suggest to hubby we go to a nice pub for lunch…

Take care all Kay x

27

Hi ALL

Kay I hope that they can do the liver resection but as you say it is a scary op so there are lots of things to think about… my liver still seems to be getting large although I’m half way through vinoralbine see onc on 1st when he or me will make some decisions about keeping going or stopping… he takes tumour marker results but I haven’t had a scan for ages so may ask for one as everything I read about tumour markers say that you shouldn’t use them on their own??

Dawn hope the speech therapy goes ok… when they are little they often need a little help and its good news that there is no problem with hearing. My kids are all grown and have 3 grandchildren.

It is raining here… so cant feel too optimistic… why is it that you feel down when it is all grey around you?

28

Hi All

Just caught up with this again, as not been on line much last few days. Felt quite down actually, think it is just the last session of chemo last week and probably not resting as much as I should, all catching up with me I reckon, and also get so scared sometimes about my future, but have just decided that what will be, will be, and there is really nothing I can do to alter things as such. So trying to keep a brave face and go with the flow …

Kay, sorry your news was not what you wanted, although it is good that it has shrunk. Hopefully they will be able to do resection or ablation in future, but others on here and bccpals have said that second opinions worthwhile, as oncs and drs not keen on ops on liver. Just a thought, and I have absolutely no idea about any of it, but know that we will seek a second opinion if onc not keen, just to see what a liver surgeon would say.

Is taxol same as taxotere, I am starting tax on 10 Oct and read so many side effects esp, with nails. Heard to paint them with dark nail polish might help, although I never wear nail polish, so not sure if will do it myself, but then if it helps prob worth a try.

Sophie will be 4 in December Kay. Some days she does speak clearer than others, and some days stutters/stammers a bit. Not really too worried, although do want her assessed just to see if there is anything we can do to help her. Although she ignores everything I say most of the time, or carries on pronouncing her words in her own sweet way!!!

Wisdens, hope you are OK. How do you know if your liver is getting bigger, don’t think I would have a clue to be honest. Hopefully they can change your treatment maybe that will work better. I have never been told anything about tumour markers - do you think this is something I should ask about. As I have said before, no idea about grade or size of my bc or liver dx, and not sure if I think my bc lumps are shrinking. Try not to think about it.

Bet you love spending time with the grandchildren. Seeing my little Jack changing and learning more everyday is so rewarding and watching Sophie with him is magical (well most of the time, when she is being nice). I hope you see them lots.

Anyway, I think I have babbled on enough. Hope you enjoyed your pub lunch Kay and Wisdens hope you are feeling a little better. It is so hard isn’t it. I sometimes wonder how people stay so focused and positive, but I suppose we have to in a way.

Take care both of you. Thanks for keeping this thread going as I have said before. Helps me so much actually talking to you both, as being in the same sort of position.

Hope your sunday nights are ok and that the week ahead goes ok. Catch up soon.

Lots of Love and Take care
Dawn
xxxx

29

Keep babbling Dawn as it helps to get things in perspective… you probably need to ask some questions of your onc as I do but it is all so scary and you don’t really want to hear all the doom and gloom. As for knowing about the size of my live I can physically feel it a very hard lump between and across the rlower rib area… this stuff is supposed to shrink it… The trouble is I am on steroids which make me starving and there is no room in there to eat anything I just feel so full…

I really will get myself together and ask the questions at my next appt… I promise. So you muyst too.

Big hugs to all here

30

Dawn, sorry didn’t answer your question on tumour markers… from what I have gathered most ONCs dont’ use them on their own, it is just a blood test and not everyone is suitable for the test or it doen’t necessarily show up anything on some people… but I 'm not very well informed about this and it seems difficult to find anythng on the net

31

Sorry not to have responded to your last postings sooner - am still struggling with my MRI results and what they might mean. Saw the breast surgeon for a routine appointment earlier this week - he also felt the results were disappointing but seemed to feel they ought to look at the possibility of doing the liver resection sooner rather than later if the chemo isn’t shrinking the tumour rapidly. So he is going to speak both to the onc and to the liver surgeon - no-one seems sure whether it is even a possibility at this stage though hopefully the liver surgeon will know! I’m just really scared that the cancer will get the upper hand again and the tumour will start to grow again, or (even worse) spread elsewhere. I do feel the liver resection is my best hope and it just seems to be looking less and less possible. So more waiting - and I am really bad at waiting!

My docs tend to measure tumour markers fairly regularly - indeed it was the tumour markers going up that alerted them to something else going on (which led to the PET scan which led to the liver secondary being found). And though my tumour markers have dropped with the chemo, they also have not dropped as much as they would like or at the rate they would like. They took more blood today to test them again to see whether they are continuing to drop - that may also affect the decision as to whether to operate now or later. I do think they need to look at scans as well though, Wisdens, - I think the tumour markers give more indication of how metabolically active the cancer is and the scan obviously gives the size. I think there are 3 different markers they test for, one in particular being linked to the liver. 2 of mine are within the normal limit but the liver one is the one that is raised (CA-153???).

You asked about Taxol and Taxotere, Dawn - the two drugs are related, I believe, both being derived from the yew tree. So I think the two drugs also have similar side effects, the nails being one of them. I’ve painted my toe nails but (like you) don’t usually wear nail varnish and don’t think painted fingernails quite fits with crawling round the floor in Nursery! Did think I might paint them with some kind of nail strengthner in the hope that that might help or find some natural looking colour to cover up the horrible colour some of them are now. Have cut my nails really short as well - and never realised how frequently I use them. I keep having to ask other people to open things for me - and peel my satsumas!

Trying to stay hopeful and positive but, as you say, Dawn, it is hard. It’s also hard always being the one giving everyone else the bad news. I just feel as if I want to have a break from it all at the moment! Not an option though is it? And as you also say, Dawn, talking to others who know and understand because of their own experiences certainly helps.

So …hope your appointment on the 1st goes well, Wisdens. And let’s take it all day by day.

Lots of love Kay xx

32

Thaks Kay -had a set back yesterday with my chemo being suspended cos of high liver function test… in fact really bad ones the nurses spoke to onc and they have upped the steroids til I see him on Mon… apparently the bilirubin is ok so I’ll last the wkend!! feeling really frightened but onc said that he can sort it out.

Grandchildren coming for wkend so that’s a good one to make the time go quickly.

33

Hi Kay and Wisdens

Kay, sorry again to hear that things still not too good and no-one seems to know too much to help you. Must be freaking you out a little, would me. Lets hope that they get their heads together soon and sort out exactly what can be done, and hopefully will be resection. Have to let us know. If you find out any facts when you see them all, let us know. Got another onc appointment on 24th, hopefully with MY onc and not another one, and will ask questions again, although know that they will still say gotta wait til finish chemo.

Wisdens sorry about your chemo not being given yesterday, must be such a blow, as we get ourselves all ready for it and try to be positive, then to be told No, must be a knock back. I have not had that yet (touch wood), but I know how I start to work myself up waiting to find out, and think would just break down if said no. Hopefully when you see onc on Monday can all get sorted and get you back to even keel, and continue treatment. Let us know how you get on.

Well have been busy this week out and about visiting my friends who have just had babies (3 of them), and got over my emotional downer last week now. Have got an ultrasound appointment come through for next Thursday at 10.30, so see if lumps shrinking in boobs. Am sh*****g myself about it really, as worried that they say they have not shrunk at all, or even worse, got bigger. Know should think positive, but it is a worry. And then starting taxotere on 10, so only got just under 2 weeks for that. Bit of good news, got my DLA through Tuesday, and now about to apply for Blue Badge to park where I like, make it easier with the kids too, as baby spaces so far and few between. And apparently our critical illness stuff has at last all been returned by drs and onc, so that can be finalised we hope.

Anyway take care both of you. Keeping everything crossed that you both get some good news soon.

Love
Dawn
xx

34

Have been thinking about you today, Wisdens, and hoping that your onc has come up with a super new plan for you! It is such a rollercoaster isn’t it as we have to adapt to new plans and things not going as we originally thought. Do let us know how things are.

I’m feeling much better about things. Had my latest blood test results which showed quite a big drop in the tumour markers since August. So the onc is now sounding really quite positive about the chemo working ok!! Have yet to hear from the breast surgeon again but the onc is quite clear now that we need to continue with the chemo for another 3 months and get the maximum benefit/shrinkage and I am feeling much more confident that the tumour will continue to shrink.

Stay as positive as you can about the scans, Dawn. They are scary though because they are the proof of what is happening, so you’d not be human if you didn’t worry! I’ll think of you on Thursday and hopefully it will be good news - think how good you will feel then.

All go here this weekend as my eldest has moved back home for a couple of months (the flat that she was renting in London has been sold) but my youngest (Catherine) returned to uni. So there were boxes going out and then other boxes coming back in! In fact there were more boxes brought in than went out so we look a bit like a jumble sale at the moment!
And then my middle one (Michael) is off travelling tomorrow for 10 weeks - New Zealand, Fiji and Hong Kong. Not sure whether I’m sad to see him go, or very jealous, or just happy that he has the opportunity. I’ll certainly miss him and Catherine - and I’ll have nearly finished chemo by the time they are back! (And it will be almost Christmas…)

Anyway must go to bed as I need to go to work early so I’m back in time to go with Mike to Heathrow and say my goodbyes. Take care of yourselves

Lots of love Kay x

35

Hi Wisdens,
Sorry to hear about your chemo being stoped but I am sure your onc will be able to sort you out. I had really bad LFT results in Aug including sky high bilirubin levels which turned me a lovely lemon colour! They started my chemo at very low levels and mt LFTs are now about as normal as they can be. I was given weekly Epi & 5FU through a continous pump. I hope this helps. I am keeping a close eye on everybodies progress with the ablations, don’t think I am suitable as had “numerous” tumours when they did ultrasound in July. Had Ct scan yesterday get results tomorrow.
allie