Anyone else with liver secondaries?

Public Archive
401

Hi all

Good to hear from you Dawn - have now emailed you. Do give me a ring when your “muppets” allow - I’m here most of the time at the mo tho got a “wound check” at 4.30 this afternoon! Was it your big birthday yesterday? You mentioned it was coming up but not when. Did you get to your spa treatment if so? And is it this coming weekend you are off to Chicago then? Good news about what the prof says about the effect of the chemo. “Spectacular” indeed - he only described mine as “good”!!! Sounds almost as if he is being a little tactful possibly because he has picked up on those “subtle” areas of disease that your onc hadn’t - ie they might not be immediately noticeable on a scan. Presumably that is why your onc had previously just talked about the 2 tumours because he’d missed them. Does that make any more sense?

I see my onc on Thursday and like you not really looking forward to it, though I can’t think what more bad news he could give me at this stage. Am prepared for more chemo, know it is not operable but also know that it has shrunk in the scans so… Suppose I’ve just got to wait and see what he says - hate waiting!!

Forgot to comment Jacquie on your “revelation” about your hubby!! Purely because it makes no difference at all - it is other people’s preconceptions isn’t it though as Cathy says. SOmehow we all have a mental image of a “vicar’s wife”!! There’s something similar I keep very quiet about because again of people’s preconceptions - don’t tend to reveal it until someone asks me the right question!

Not sure I fancy this hand and foot stuff, Tracey. I had huge problems with my nails on the Taxol - have lost 5 toenails and my fingernails were (like yours) oozing etc and had to have antibiotics twice. Much better now - fingernails growing out nicely and just black at the ends - and don’t really fancy doing that again. Nor do I like the idea of cracked skin - but had better wait and see what the onc has planned for me. And then will just have to get on with it, I suppose - at least I can pamper my feet and hands in advance if need be!

Seeing the sun has been fantastic hasn’t it, Manon? I’ve not managed to get very far but have enjoyed pottering around the garden. Hoping that I might get to the Wisley gardens on Thursday before my onc appt and enjoy the spring flowers there as feel I can walk quite a reasonable distance now.

Am also still toying with the idea of going to the secondary focus group in London on Monday (on employment). Am feeling much much stronger each day and think it would at least keep my brain cells active!

Anyone going on live chat tonight? Thought I might provided I can convince my son he doesn’t need to download anything! Tends to muck the wireless connection up if he’s doing that at the same time.

Hope to speak to some of you later.

Lots of love

Kay xx

402

Hi Everyone

I’ll be on Live Chat tonight - that is, if there is enough space. Find it ridiculous about limiting the numbers but wont go there!!!

Got my Zometa this afternoon - lucky me!!

Got called back to hospital again yesterday - mammogram results! Well, it seems like the 2 fatty lumps that showed on CT are just that but even BC Cons cant find them!! Got to go back again on Thursday morning for an ultrasound on them this time - then another app with BC Cons.

Wahey!! Maybe I should change my address, I seem to be living at the hospital at the moment!

Got to go and get ready now - catch you all later and hope that you are okay!!

Love Anne xx

PS I’ll try to stay off the port tonight, Kay! Its that Angee, she’s a bad influence on me!! hehe!

403

Hi Girls (and Nigel if you’re listening),
Just a quickie to wish Kay and Dawn luck with your appointments. Dawn, that does sound like your tumours have responded incredibly well - brilliant news. Kay, hope you get to Wisley in the sunshine - you must be sick of seeing the inside of your house. I’m glad you can walk now.
Cathy, know what you mean about struggling with your faith - it’s certainly been up and down around here! with lots of shouting at ‘him upstairs’ (I’m sure he can handle it) but have to say the overriding experience has been a sense of not being alone in it. And I am finding myself surprisingly convinced about the afterlife, and going ‘home’ - I never knew how I’d react if my faith was put to the test -would it just crumble? pleasantly surprised so far…
Now, what’s Kay’s dirty little secret?! You used to be a traffic warden? You’re a naturist? Your husband used to be one of the Chippendales? The mind boggles. Let’s get to work thinking up questions everyone…
Sixpen, treat yourself to a glossy magazine and a huge bar of chocolate, for all your hospital visits. Hope thay find, or don’t find, something conclusive.
Love to all
Jacquie x

404

Hi All
Just thought I would share my latest scan results - absolutely clear - no visible sign of disease on my liver!! Had my Herceptin treatment today too so can’t wait until I can crack open that bottle of bubbly that is waiting in the fridge. That makes it five years since secondaries diagnosis (Feb 03) and 4 years on Herceptin (my 72 cycle today).

My Oncologist has told me to last another 5 years so here’s hoping!!

Blondie

405

Blondie, Brilliant news!! I’m delighted for you!!

Jacquie, Thanks for the greeting! I’m glued to this post as I find it so inspiring + it gives me hope.

Take care everyone - here’s wishing you all the best

Nigel

406

Blondie, that’s brilliant news. Thank you so much for sharing that with us. Good news and hope for all of us.
Enjoy your bubbly!
love Jacquie

407

it is lovely to hear everyones good news, it really is inspiring. My faith was tested but I have to say it has held, i am a great beleiver in the power of prayer. Cover all your bases, I am included in prayers in the RC church, C of E, Methodist, by an Imman in Egypt and am looking for someome who visits Synagogues often. Sorry if that sounds frivilous its just that my friends are multi-faith. What is Kay’s secret, we should start a lottery, the one that guesses it shoiuld get a bottle of bubbly. Were you madam whiplash!!!
Keep well

408

Hi All

Just a quick one as I am at work and supposed to be doing something with tax (arggh)

Blondie, thats absolutely marvellous I am thrilled for you, it gives us all hope really that treatments are so much better than they were, I am thrilled.

Jacquie- thanks for the reply, I am glad to hear this and it gave me quite a boost to read your post…there is obviously alot more to say here but I will save it for the moment.

ooh kay, you will have to give us a clue ! I am fascinated…I quite like the suggestion of the chippendales, or maybe it was something similar in your past!!

love
cathy

409

Hi Blondie - so pleased to hear your results! very timely for me too as I get the results of my latest scan on the 22nd. They will be quite significant as they will tell me whether Arimidex is having any effect. If it is - the prospects are fairly cheerful, if not - it’s back on the chemo and the prognosis is not so good. I can feel that the tumour in the breast has shrunk quite a bit - but as we all know it’s the bastard in the liver that counts. I’m normally quite sanguine about all this - but I confess to being nervous about this one.
Anyway, fingers crossed and news like yours is just what we all love to hear.

X

410

Hi all,
Firstly Blondie that is great news! Its good to have some good news for a change.
Kay, when I was on 5FU last year I had foot syndrome ( but not hand!)I found it was difficult to stand in one position for me not very good when you are doing food festivals! Kay- I think you were a nun in your previous life!
Manon good luck with your scan results, I have a scan on Tuesday and hopefully results on Wed when I see the Onc and have the dreaded Zoladex
Take care
Allie

411

Hi All

Blondie - what Fab news to share with us all. Give us all hope for the future and determination in my case to keep on fighting. Keep sharing the stories ladies.

Kay, your secret is now bugging me, you MUST give some clues to us.

Hope everyone else is OK. Was gonna write one of my long messages, but Jack just woke up and is starting to shout/cry quite loudly, so gonna have to go and sort him out.

Back later
Lots of Love n cuddles
Dawn
xxx

412

Hi all

Absolutely fantastic news Blondie! That’s 2 bits of encouraging news today (see other thread - positive news) - just what I need before my onc appt tomorrow.

Really wish I hadn’t started this guessing game - it is incredibly boring compared with everything you are all suggesting. Just something (like Jacquie’s) that I don’t tell people initially because they then tend to look at me differently. So I am definitely NOT going to announce it on line for all to read…and can’t tell you now anyway because I am embarrassed that it is such a non-fun thing (and that is half a clue I suppose - people expect me to be very serious when they know). Am sure we all have somethng similar we keep quiet about until we know people really well…

Good luck to everyone with appointments and scans

Kay xx

413

So very glad to read your good news, Blondie. Enjoy the champers, you deserve it!

Jenny
x

414

Whoo Hi Blondie! Only just read your good news! So, so pleased for you…Belinda…xx

415

Hi All

Well was halfway through writing a response here, then all hell broke out. Jack managed to fall in the conservatory on something, obviously caught his chin and bit his tongue really badly. Blood gushing out, all over him, then me and carpet. I rushed to neighbours in panic, as didn’t know at that point what he had done, but then we spotted a half inch cut in tongue. Looks awful and makes me feel sick. Only had some banana custard stuff from fridge for dinner. Being a worrier, I decided to call NHS Direct, after put him to bed, just to make sure that I shouldn’t have taken him anywhere. Waiting for them to call me back.

Onc appointment yesterday went OK. Was more of a catch up and to see how am on herceptin. Told him about my cold I seem to get every time I have Herceptin. Said could be that never completely got over my bout which ended me up in hospital, or could be me reacting, as do get flu like symptoms, but my nose is just full of green yuk (like you wanted to know that), and have to blow it about 50 times a day. So has given me dose of antibiotics to try so see how that goes. Then I asked about scans, and said that they don’t scan regular, as would be “over scanned”, but probably do one 6 months after last one in December. He will see me in 3 months time to make sure OK. He had a “grope” LOL - and said very pleased with things at the mo as responded well to treatment. He didn’t mention the prof, so nor did we.

I then asked about massages and he said that was fine to have one. The nurse looked at him funny and said need to be careful on some of oils they use, and he pooh pooed it!!! So gonna ask the hotel and see what they use. Part of me is cautious cos of everyones comments and part of me wants to have one … then asked about my nails and he said OK for me to have false ones. He thinks that now not on chemo, should be treated like everyone else and do same as everyone else. Then right at end, just to convince him I am completely mad, I asked him if ok to go on all the upside down, fast and furious rides in Florida … and he thought I was barking I reckon. So was OK, and he was very nice. I did ask what chances of herceptin not working for me, as it doesn’t work for everyone and I said, you probably won’t ansa, and guess wot, he didn’t. Said can’t say cos everyone different etc.

Hope that everyone is OK and enjoyed the good weather this week. Today was apparently a blip and the sun is coming back tomorrow afternoon for the weekend, hope they get it right!!! Sorry for not personally addressing you all, but having a glass of wine and trying to chill out and not worry about little Jack too much. Keep listening to his monitor !!! Spurs on telly too, yeah sad I know.

Take care all and speak soon
Love
Dawn
xx

416

I havent posted for a while, but thought I would tell you how well I feel at the moment. I have secondaries in Liver Lungs, Brain and Spine. Secondaries first diagnosed almost 4 years ago. I have had F.E.C. Taxol, Capectabine and just finished 18 weeks of Epirubicin. This made me terrible sick but they then cut the dose to 50% and I felt great, no sickness or side effects. Had to stop this now as I have had too much as it could affect the heart Muscle
So back on Hormonals. Femara this time, already had Tamoxifen, Arimidex. Faslodex, Megace and .Aromasin.
I lost my Husband last November to Bowel Cancer so feeling a bit lonely now, I am 69 years old.
I need a break so am going to Tenerife for a week on my own on March 4th and looking forward to it. I managed to get Medical Insurance this time with Excess of £350 for anything related to the Cancer
So Ladies there is still lots to look forward to if you can set some Goals. I am hoping to go to America again in the Spring. Have been there 4 times since Secondary Diagnosis without Medical Insurance. Risky I know, but my Son said that he would get me back on a flight the following day, and I cannot think that anything can happen so quick.
Good luck all, and roll on the Spring
Dot xx

417

Hey… It’s our Dot!

Enjoy that holiday. You will not go short of that company in your stylish swimming cozzie!!

Jenny
xx

418

hey all

Had fifth taxotere and feeling very reasonable at moment but waiting for bone aches to kick in on monday or about then.

Wow Dot 4 trips to US good for you! that s really great I admire you! And of course you are right, as long as you have a back up plan like that it works. I am sorry you lost your husband to bowel cancer, its a bastard this disease…in all the forms that it takes.

Eek Dawn, kids have these accidents. i can stil remember when my husband shut my sons finger in a door by mistake, it was ghastly really awful, my husband practically burst into tears with the guilt. My friend’s boy Jack poured a hot kettle all over himself- disaster.

You crack me up sking about upside down and fast and furious rides !! It will be great. I may try to go to US for work in april,have bookmaked Aberdeen Insurance.

Kay OK no more guessing, but it is an interesting point about how we tell things to others, for example, I never tell anyone about my son at work as I dont want to be perceived in a certain way…by the way I have been meaning to ask you how is your daugher getting on with work applications- I had an idea that I will e mail you with.

love to all
Cathy

419

Hi all

Great to hear the good news from Dot and Blondie! Enjoy that holiday, Dot - good on you to carry on travelling albeit by yourself. So sorry to hear about your husband.

Wanted to ask you also Dot about the Megace. I saw the onc last Thurs and he’s decided to try me on that (already had Tamoxifen and Arimidex) rather than more chemo. He didn’t seem over confident that it would “hold” things for very long but just wondered how successful it was for you? Or anyone else who has had Megace? And were there any side effects - he did warn me I mght put on yet more weight!

Thanks again Cathy for thinking about my Catherine and her job applications - stressful time for her really what with me and working towards her finals etc. Have emailed you back.

Sun is shining and we’re off to eldest one’s in Putney for a family meal out to celebrate Catherine’s 21st last Wednesday. So need to collect together her cards etc - and the champagne!

Enjoy the sun

Kay xx

420

Hi Kay
Megace gave me an appetite, but as I was underweight I needed to eat more. Havent put any weight on but stopped me losing anymore i think. I don’t think the Megace worked at all as I had to have Epirubicin after that and my Liver was very swollen, could feel the 2 large Tumours But i didn’t have any side effects from it so I suppose that is a bonus. I am still taking it though along with Femara and Bondronat but I just hope that it keeps me stable for another few weeks as I am getting a few niggly pains in Liver area again. PLEASE let me have my holiday first, I really need it.
Dot