Anyone else with liver secondaries?

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181

Hi jacquie, Jill

FDA is USA Federal Drug Authority and their advisory committe is made up of independent doctors…so its like our NICE but my understanding is that the decisions are not about cost they (like NICE) they are about rewards vs risks of treatment, so they consider whether extra side effects are justified by results, and for avastin they came down with no. It may still get approved by US for advanced breast cancer, but it is a big negative for avastin and it just happened, Its frustrating really as I would have liked a shot at it…I want to believe it doesnt matter but I am not sure

Dawn have you got your appointment yet ? maybe it has to be just in the new year now? Keep us informed…

Hope everyone is keeping OK, off to get my port in the morning, not looking forward to it…

love
cathy

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Hi All

Well had a bit of a lapse yesterday and had a bit of a tearful one for some reason. Think part of it was knowing that today should have been chemo day and worrying about when my next treatment would be, as feel that I have lost my safety net, and i also emailed a friend I lived next to when born til about 5, but we still keep in contact now and again, and she sent me a lovely msg back which had me in tears too, and then that was it on and off for the rest of the day … but …

Had good news today, chemo ward rang to say am starting Herceptin next Thursday, as long as my heart scan goes OK next tuesday, so feel better knowing that things are back on track and I am being given medication to help fight it.

Cathy am sorry to hear your news that you can’t have avastin, it is unfair and I don’t think anyone should be denied treatment of any sort. Can you not fight for it or is it not possible. With regards to insurance if you look at one of the topic discussions there is quite a lot of different insurance companies listed, which I am going to use and ring up to get quotes. Can’t remember which topic under, might be this one, or having chemotherapy, but do a search. If I find it will let you know.

Jacquie, have you any tips on Herceptin, and what side effects you have had or know of … hope you are doing OK though today and not suffering.

Kay, hope you are doing well and things going ok for you this week. Let us know how you are. Still no word from wisdens though, which is not good I don’t think.

Anyway, sorry to people I have not mentioned, hope you are all doing well and having a good week getting ready for christmas. I did a little on-line shopping yesterday. Thinking about being brave and getting my backside into lakeside to finish off, once OH lets me know when is good for him to stay home with the muppets!!! So that will be fun … NOT.

Lots of Love
Dawn
xxx

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Cathy

Do a search for insurance companies under the topic “Undergoing treatment for breast cancer” and you will find quite a few insurance companies.

Hope it helps
Dawn
x

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Hello everyone,

This is yet another attempt yesterday’s message went walkies - this cyberspace has a lot to say for itself, so please forgive me for not making individual comments. A lot seems to have gone on in the last week with you ladies and I hope all goes to plan for you all.

We had a nice break in Germany and bought a couple of things from the market and lovely shopping mall, but I have still got a lot to do. I now realise what my limitations are regarding how far I can walk before the old bones start aching and I couldn’t take advantage of all the lovely shops. I have loads to do but might just cheat and give money for once.

I start my first treatment tomorrow of Zoledronate and the onc was talking of me being part of a trial, whereby I would have 3 monthly instead of monthly doses, so will see what’s what tomorrow and will let you know. Have got my list of questions ready.

No doubt now I will start to understand all the abbreviations you all use regarding your treatments. I still wonder what’s happening to my liver as there doesn’t seem to be any pattern regarding its behaviour and I wonder how a little pill (Arimidex) can work on all my gremlins.

Bye for now, take care
Luv Jen x

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Hi

Hope you are all doing well - how did the port go, Cathy? Hope you’re not too sore/bruised. Real shame about the Avastin. I’ve got mixed feelings about it now having finished - mainly glad that it wasn’t being described as so risky with strokes etc when I started on it back in June (it is 18 chemos I’ve had, Dawn - not a typo - but being weekly, easier going than the 3 weekly cycle I think). The FDA vote was close though so the evidence mustn’t have been that clear cut. For me it was all about getting the tumour to shrink enough to make it operable - and it and the Taxol certainly have done that! But would the Taxol have done it anyway without the Avastin? Who knows. Would be interesting to know what my onc now thinks with the new info/research. Have you seen there is another thread on this forum about the FDA’s decision.

Returning to work must be a bit scary, Jacquie. I’m sure you will cope fine though - just make sure you ease yourself in. We do a movement song in the Nursery at the beginning of each session - hopping, jumping etc - and my wig has been fine. Must admit it doesn’t include any “upside down heads”! I did have a power ranger bounced through it at one stage which made me more than a little nervous (and the mum!) but the child was fine. I’ve also, like you, been worried at times about remaining “professional” when the parents I know well are so kind and understanding. But haven’t cried yet - come close to it every so often but manage to pull it back by focusing on the child. Not sure I’ll be able to keep that up though as I go off for my op and have to say goddbye (and then hello again at Easter).

I’ve been enjoying having Michael back home not that I’ve seen much of him - jet lag and too much alcohol I think in Hong Kong. Annoying thing though is that now he is back, there is the old “competition” between him and his sister (more like toddlers than 23 and 20) - arguing over whose cup it is on the table and who therefore ought to put it in the dishwasher and whose turn it is to lay the table/peel the potatoes etc (“but I did it yesterday”!!!). Aaagh. Will have to have serious words with them if it doesn’t settle down! Do they every grow up?!!

Glad to hear the Herceptin should start next week, Dawn - when do you get the heart scan results?

When are your two back home, Jen? Hope talking things through with them goes well.

Anyway must go write some Christmas cards. Take care

Kay x

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hi Kay, Jacquie

You do make me laugh, with power rangers on your head ! Anything involving small children is doubly difficult as they are so energetic and lively and simply dont take no for an answer…

Port doesnt feel too bad, but have been a bit sad about it, I think the technology has come on a bit as this one is definitely alot smaller than the previous version so I think it should be much more comftorable more quickly.

Its a very interesting debate about avastin, just a shame that we have to have a definite and personal interest…I am going to look for this thread,from what I know avastin plus taxol is a better combination than just taxol…but my onc is a big fan of taxotere. Off for the next one tomorrow, and then I will have to make a decision about a review,

Dawn I know what you mean…I have days where I am remarkably OK and then days where it all falls apart…its hard…it really is , only thing I have found is that if you are really tired it is even more difficult to keep it together. Also it is strange how people outside of it think that there are answers - been offered all sorts of advice, its only really good friends that have been helpful.

best to all
Cathy

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Hi Everybody

I have been following yor thread for a while now and would just like to introduce myself. I was first diagnosed with breast cancer in 2002, and again in 2004, in May this year a routine mammogram followed by a CT scan showed up liver mets.

I have just finished six courses of Taxotere and I am also receiving Herceptin (that’s carrying on indefinately). I seem to be lucky and don’t get too many side effects, but I am glad not to be on chemo over christmas!

It is reassuring to know that there other people out there who are going through the same emotions and frustrations as me and can still find something to laugh at.

Take care

Debbie

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Hi Debbie,

Welcome to the forum, I just wish it was different circumstances…its such a shocker isn’t it? I know there is no good way to find something like this out, but it doesnt exactly happen the way you think it will, if it makes sense to you…

I have just had my second taxotere- I wasn’t too bad on the first one, so I hope the second one will be ok, unfortunately I am HER 2 negative so herceptin not an option…

Are you from up north, down south or london in general terms ? I live in SW london…

take care
Cathy

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Just left a long message about how fed up I am and it got lost again. I meant to copy it before i tried to send but forgot. Gonna crawl away and cry in frustration!!!
Jacquie

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Okay I’ve had a cry and will try again.
What I said was: Hi to Debbie and sorry you had to join us. I was diagnosed in March and quite quickly found out i had a liver secondary. I’ve been on FEC, then Taxol with Herceptin. Just finished. Had first Herceptin-only on Monday. Been feeling a bit rough first couple of days - dog tired and a bit nauseous, but I have been overdoing it a bit with Christmas events and late nights! Let’s hope that’s the reason.
I’ve been on a bit of a downer the last couple of days and just so incredibly grumpy and out-of-sorts. My poor OH just takes it all calmly, but i feel so guilty being grotty with the kids.
Two people I know have been admitted to hospices in the past week or two, one with BC (who was just ahead of me in treatment, had only primaries, and I was expecting to sail off into the rest of her long life) the other with a rare pancreatic cancer and he died on Monday. Both have children. Also, a mum at school has just been diagnosed with BC and that’s made me feel angry. Not because I feel for her (although I do) I’m ashamed to say, but because I expect she’ll ‘only’ have a primary, get some good treatment (with no cock-ups like I had) and be getting on with her life again. It feels so unfair. I really don’t want to belittle anyone’s experience or offend anyone with primary BC who’s reading this. But I just feel so cheated. I didn’t even have a few years after my primary was treated before the secondary diagnosis. I feel so trapped and frustrated and angry.
Christmas isn’t helping. I was really looking forward to it, and have got lots of social things planned, but I’m just tired of all the lists, shopping and planning, and rushing around, and there’s still ten days of ‘to do’ lists to go! Maybe I’ve been trying to get back to a normal pace too quickly. But there’s so much to do…
Aaaaaaargh @#**!%^£@##**!!!
Aaah that feels better. Thanks for listening. It’s so nice to know you understand.
Well I hope you’re all doing better than me and have nice weekends planned. We have a Christmas party to go to tomorrow, and then the kids gospel choir I help lead are singing at a carols by candlelight service on Sunday. I’m supposed to be helping the older girls with the harmonies but might just get up there and cry! The music’s very moving and when I see the kids singing their hearts out it brings a lump to my throat at the best of times.
Take care of yourselves and thanks again for listening,
love Jacquie

191

Hi Everyone

Jen glad you had a great time in Germany even if it was tiring. Best you try to rest now and yep, go give em all money, doesn’t hurt and sure everyone will understand. Hope your first treatment of Zoledronate went OK (not sure wot that is though), and hope you have no side effects. Hope your meeting with onc went OK too, think that was today too and you got the answers you wanted.

Kay glad you are enjoying having Michael home even though he has been a little bit absent, but am sure you will get to spend some quality time with him over christmas, and must be great fun having your two children squabbling like little ones, bring back some memories I am sure. Hope they are getting better.

Yeah, hopefully this time next week, will be one day in on my herceptin and not suffering any side effects as such. Got heart scan tuesday, so results going straight to onc as far as i know.

Cathy, glad your port thing went OK and not too uncomfortable. Hope you feeling ok about it all now. My onc is big fan of tax too, but spose have to have faith in him on my treatment (apart from liver thing). Hope your tax went OK, think it was today if not yesterday, but hopefully your side effects are minimal and you are taking it easy too.

Debbie, sorry you have joined us, but welcome to you and hopefully we can cheer you up and help you through all this crap. It is hard to get your head around, but like the others, I found out about my liver mets 10 days after my dx of bc, so was a complete shock and felt like my world fell apart. I thought that was it, and I would not see christmas, but hey, what do I know, I am here and doing very well (I think). Glad you have finished your tax, I only had 3 and found it very hard, as flew through my 3 FECs, but tax knocked me for six and ended up in hospital once. Starting my herceptin next week so any advice, feel free to let me know.

So keep letting us know how you are feeling, and we will make you laugh and smile if we can. We know wot you are going through and we all help each other.

Jacquie, sorry you feeling down right now, sending you lots of cyber hugs to try to make you feel better. We are so similar on our dx, finding out pretty much immediately about our liver mets. Life sucks doesn’t it. Glad your first “solo” Herceptin went ok, even if you felt a bit out of sorts - is that normal. Just trying to get a few ideas on how I might feel next week.

Sorry to hear about your friends, and wish there was something I could say to help. I can completely understand your “angry” feelings, as I often feel that, and wish I had “just bc” - not meaning to offend anyone, but it is so much harder to deal with being told have secondaries without having a chance to fight just bc!!

Keep on screaming and ranting if it helps you, as I sometimes feel this is the only place I can really admit my true feelings, as friends and family, although are there and supporting me, though don’t really understand what we are dealing with emotionally. I think we are probably at the same point regarding this with our thoughts, as so often i think I wish I just had bc, and it was more straightforward. Again sorry if I offend anyone who reads this, but this is how I feel. I have two very young children and feel I have been robbed, although I am still here, my life is not as it was, and there is always that worry for the future and it is always there in my mind!

Oops sorry everyone this has turned into a bit of a rant too now … didn’t mean it too.

Hope your christmas party goes well tomorrow jacquie and that your carols by candlelight goes well, and hey, wot does it matter if you cry, you go girl, enjoy and see what happens and if you get tearful, just do whatever you need to do. Will be thinking of you.

I have another party tomorrow but this time its a 3rd birthday party. Love this December month, we have a party every week and some in between. Sposed to be going out Sunday night too, with the girlies, but not sure if can be bothered yet. Cold nearly gone, still hanging in there, and as am normally knackered by 7pm everynight not sure if good idea. Also the thought of a really hot place and my wig, not sure I will enjoy it … so watch this space.

My little girl was Mary in her preschool Christmas Nativity Carol Concert. They were all so very good. It lasted 15 mins and non of them wandered off or misbehaved. My daughter was soooo funny, but played Mary really well, although glad the baby Jesus was a doll the way she dropped it in the crib. They sang about 7 songs and we have to keep watching the DVD, as I have now managed to copy from my lovely new camcorder onto DVD and done copies for Gran and Grandad.

Well enough babbling from me, hope you all have a fab weekend whatever you do and hope you are all OK. Speak to you soon.

Take care and sending lots of love
Dawn
xx

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hey,
now I just typed a message and lost it!! so here it is again

Dawn - fantastic your daughter was mary - you must be really really proud, what a lovely thing.

Was just going to agree with you Jacquie and Dawn, there is a world of difference between primary and secondary…its a whole different world. I was lucky enough to have that time between the two, and I am dammned grateful for it, but it is still awful…I have now been on both sides and it is a completely different thing.

.I met a nice woman in next bed today, and all through our conversation I was thinking how lucky she was to be in for a primary and I how i would probably scare the wits out of her if I mentioned my liver mets !

anyway thats all,

take care of yourselves,off to watch simpsons movie!!

Cathy

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Lots of people complaining about losing messages and it’s happened to me too…I think it may be that if you stay logged in for too long without posting or moving between posts (because you’re composing a long message) the system doesn’t know you’re there and automatically logs you out. Certainly when I lost a message I also got logged out. Please, moderators, could you check up on this and if I’m right, do something about it? As you can see, it upsets people.

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Oh Jacquie, you are having a bad few days aren’t you? What a lot to deal with - all the practical Christmasy things as well as the emotional. Lots of big cyber bear hugs from me to join Dawn’s. Don’t be “ashamed” though (as you put it) about feeling it’s unfair that you have secondary bc whereas others only have primary. IT IS b**?? UNFAIR. I think it’s perfectly natural to resent that fact (or if it isn’t natural I’ll join you in being “unnatural”!). I know having primary bc is hard and difficult but being diagnosed with secondary cancer is so so so much harder. Like you I don’t want to belittle the experience of anyone with primary bc (because it is hard to deal with) but they also don’t actually know how lucky they really are. But, having said all that, I am definitely a “cup half full rather than half empty” person and my way of coping with the secondary diagnosis is definitely trying not to think too far ahead and valuing the little but important things in the present. So really enjoy your Christmas party, and cry your way through the carol service (I’m sure you won’t be the only one - should have seen me at the Nursery nativity on Tuesday!). And join me in not worrying too much about what gets done and what doesn’t - two of our best ever Christmases were the one when my middle one was just a few weeks old and the eldest was 3 (we ate lunch at about 4 o’clock and spent most of the day as far as I can remember in our pyjamas!) and five years ago when I was first diagnosed. I was in the middle of chemo and had just been in hospital with an infection in my breast reconstruction which had led to a lot of fluid collecting - I spent the afternoon of Christmas Eve having a drain inserted in my back. Not a lot had got done for Christmas itself but it was great - everyone “mucked” in and we all spent a lot of time laughing. And then we all went shopping together in the sales to spend the money that I’d failed to buy presents with beforehand. So have another scream, Jacquie, dump some of your troubles and worries on us (we’ll look after them for you to give you a break!), burn the to do lists (perhaps a bit extreme - I’m a big “list” addict myself - but how about crossing off every 3rd thing!) and then go off and enjoy yourself. Small glass of wine might be in order too at that party…

Welcome, Debbie - it’s somehow really good to hear that you’ve been following this thread for a while and now want to join in. We can’t sound too mad then! There’s a quote (can’t remember who or exactly what - blame my chemo’ed brain) about the only day you should consider wasted is a day when you don’t laugh. So really proud that you consider us as people who are continuing to find things to laugh at!

Saw that you had found the other thread about Avastin, Cathy, and posted on it. My onc also generally prefers taxotere to taxol but stuck to the taxol and avastin combination because that was what had been trialled & written up in the paper he’d heard presented at a conference. Really difficult decision for you to make though. Glad the port has gone in ok - hope you’re feeling happier about it now.

Really pictured your Sophie, Dawn, dropping the poor baby Jesus doll into his crib! Reminded me of a nativity at the nursery a few years ago when Mary almost hurled baby Jesus into the crib, the crib tipped over and deposited a now unwrapped bare baby on his head on the floor in front of the audience. Mary stood up, looked down at the doll and then turned to the boy playing Joseph with a look that said it all - “well you can deal with this one!”. He duly leant over the edge of the stage, picked the baby doll up by his feet and solemnly handed him back to Mary that way! Aren’t 4 year olds great?

Hopefully that image has raised at least a smile!

Take care

Lots of love

Kay x

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Hi Everyone and thanks for the welcome.

I just typed out a message and lost it to!

Cathy I was OK on Taxotere, tired but worked part-time right the way through. Did have to take a course of antibiotic pills the size of horse tablets at one point though! I live in Hampshire.

Jacquie sorry about your friends I’m not surprised you are feeling down. There is a world of difference between primary and secondary, you feel you don’t like to mention it to primary sufferers in case you upset them. I had five years with recurrent primary cancer so I probably had more time to adjust to the possibility, but it is still a shock and the the emotions you go through seem to be far more intense.

My OH finds the whole situation very stressful but can at least joke now that I have selective tiredness - girlie shopping OK but housework - ooh I’m sooo tired…!

Hi Dawn So lovely your daughter was Mary, you must have been so proud. I had my first Herceptin only at the beginning of December, I just had a day when it felt like I was getting a cold, a bit achy and sniffy, but then fine.

Take care

Debbie

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Hi Girls,
Thanks for all those kind messages. Feel a bit better today - have only cried twice so far! I agree with Debbie and Cathy, even with other BC ladies i feel i have to hold back on talking about my secondary for fear of frightening them, so am always slightly censoring what i say and not able to ‘let it all out’.
Thanks for the nativity accounts - made me laugh. Great you’ve got it on DVD Dawn. They do love to re-live it over and over, don’t they?
Good news you’re on target for herceptin next week, Dawn - it’ll be good to get the first one over with.
Kay, I guess you’re right about the ‘unprepared’ christmases being the best - there you go Cathy (I think it was you), just send them off to the sales, cash in hand…
Well, must go and wrap some presents - I’m determined not to be up at 1am Christmas eve doing it all…
Have a good weekend, don’t do anything you don’t want to, and seek out friends and good food and drink! That’s my weekend philosophy anyway!
love Jacquie

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I have just tried a different method of typing a message for the board. I minimised the BCC message forum and created a new Word document (save it), minimised this and kept jumping back and forwards between both. Just copy and paste, it won’t matter then if you get timed out as you’ve still got the Word version. Hope this helps, trust me I’m a typist – sorry if you think I’m a clever clogs and you probably think it is long winded but I think it’s better than losing a long message. This helps me as my memory is like a goldfish and can’t remember what I’ve just read!

Jen x

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Hello ladies

Dawn, I hope you can find the energy to go out tonight with your girlfriends and hope the heart scan goes well. We don’t have any little uns in our families now, so miss out on the school plays, they’re always tear jerkers.

Jacquie, hope your party goes/went well today and let it all out at the carol service, I always have wet eyes and dry mouth wherever children are concerned, I think it’s so emotional this time of year anyway.

Kay, I know where you’re coming from our two (27 & 23) are best of friends for a few hours and then the fun starts, but I wouldn’t swap it. Must just try not to get involved as our son is a wind up merchant, I don’t think they’ll ever grow up. Vicci and boyfriend arrive tomorrow night, don’t know yet when Andrew gets back, he’s got duties on board even though ship has docked. It’s just prolonging the agony, ‘cos we can all move on once it’s in the open.

I had my first infusion of Zoledronate on Fri and stayed in bed yesterday as I felt cold to the bone, but temp was just over 38, had bad headache, aching – just like bad flu symptoms as was expected. Today I feel like I have been run over by a steam roller. This treatment is a bone strengthener. I suppose I should really be posting on the bone site because I am not yet having any other treatment for my liver and lung mets other than Arimidex.

Once more good luck to you all and thanks for being so supportive, even though I’m not yet as far down the road as you are. Look after yourselves and take care.

Love Jen xx

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Hi jen
Well first thing is I think thats a good tip on the word document…I am going to try it as I like to flip between applications.

We are all different arent we ? I had first Zoledronate on friday and it wasnt too bad really, I think I had more mild version of what you describe as I felt a bit like I had been shoved and definitely had a headache…just a little bit fluey, people are very positive about the zolendrate so i reckon its not too bad…I hope thats as bad as it gets, Port is calming down and settling in, feel ok about it, especially where I can see funny red mark all the way up my arm where I had first taxotere…so I dont think my veins would have stood up.

Went to church this morning with my family and my parents…a little hard as my father insisted on crying through alot of the service, he is finding it hard. They have come over from the States and are going back tomorrow. I pretended I didn’t really notice, but I did…it is a little difficult dealing with their grief and I am still here and kicking!!

So now have packed off the parents and am going back to the seeking out good friends, good food, and tiny amounts of alchohol…I think this is a good philosophy Jacquie.

I hope you are all doing OK,

love
Cathy

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Hi all,
Been completely overwhelmed with Xmas orders/fairs etc at the moment but still going strong, i can’t wait til next Sunday when I close up the shop. I have been really weepy too lately so much so that when i went for chemo last week I broke down and am now referred for counselling in the New Year. I think it will help to have someone to talk to about the enormity of being diagnosed with mets. I think its only just starting to sink in. I think its the thought that I might not make it to another Xmas, Birthday etc not that I will go down without a fight! I wouldn’t mind but I don’t really like Xmas!! Anyway got two big orders to finish next week and then I get at least 2 weeks off. I am moving both my manufacturing unit & shop in the new year so that should keep me out of mischief for a while. On our meeting up I have a dentist appointment in London on the Thurs 17th of Jan and plan to stay over with OH until Fri Pm if that is any help in organising a date.
Anyway enough about me, welcome Debbie and sorry you had to join us. I hope everyone else is busy with Xmas duties!
Jen, good luck with telling the kids, I don’t have any of my own but it must be a stressful time for you.
Jacksy, I know wat you mean about not telling everything, there are only a few who know about my mets, I sometimes find it very hard to deal with on my own.
Dawn, I love the story about your little girls nativity, good job it wasn’t a real baby!!
Right off to watch Cranford,
Take care all,
Allie