Anyone else with liver secondaries?

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21

Hi Blondie

Never too late to join in and certainly not too old. We are here to help each other. I am 39 - not sure if you know that with two kids, 3 yrs and 10 months. You are doing so well and give me so much hope to hear that you were dx in 03 and still going strong, and it thrills me to know that it is possible, as when I was dx in July, my world fell apart, as so wanna see my babies grow up. I have done 3 FEC and am starting 3 x Taxotere with first one next week. I am then going on to Herceptin. So very similar to your last treatment I think.

Where about in Essex are you from and where are you being treated. I am near Lakeside, and having chemo in Southend.

Take care and keep posting good news.

Love
Dawn
x

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Hi Blondie,
It is wonderful to hear how well you are doing, brings hope to the rest of us liver secondaries girls.
Take Care
Allie

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Hi Blondie

Definitely not to old for this link - no ageism here and anyway I’m 52 next month! And to hear of your dx 4 years ago and of the success of your treatment is such a boost. It’s so good to hear of people like you out there in remission. And I was also interested to hear your first treatment didn’t work for long - I was diagnosed in May this year and am on chemo (Taxol & Avastin). My latest scan showed some shrinkage but not as much as they would have liked though my tumour markers are continuing to fall (so I’m feeling reasonably positive at the moment). It does give me hope though that should this chemo combination not prove successful long term, another alternative might. And I think that is all we want really - some hope of success even if when we know it is far from guaranteed.

So really good to read your post. Long may you remain “free from observable disease”! Kay x

24

Hi Dawn

Forgot to ask how your ultrasound went yesterday? K x

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Definitely no age restrictions here (57) just the dreaded BC… d b thing…

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Hi Kay and Everyone

Kay my ultrasound on Thursday went OK - nothing to report really. Said couldn’t tell me anything as needed to compare this ultrasound with original to see if shrinkage - not sure if fobbing me off!!! She did say again that left boob still inconclusive, which is why had the original MRI scan, but we were not told what results were from that actually. So spose no news is good news, but don’t think will ring up and find out, in case bad news.

Got my first round of Taxotere on Wednesday at 2pm … am starting to dread it and worry about it, as don’t know how will affect me, and whether will knock me for six!!! Ah well, least it will be doing some good and killing the b******s we hope!!!

Sorry got to cut this short as dinner ready and 3 yr old being a right little cow …

Speak soon all.

Love
Dawn
xxx

27

Hi Dawn
Nice to hear from you. I suppose you know all about painting your nails with some dark nail varnish (toe nails too) when on Taxotere - it has been found to help with nail loss by some people. I am sure that there is lots of information on how to get through Taxotere by the people on the forum. I must say that I didn’t find it too bad but I did have to ask for better anti-sickness tablets at one point, if I remember.

I was told not to see the chemo as ‘nasty stuff being put into your veins’ but as a ‘wonder solution’ or a ‘white light’ that is going to zap those nasty cancer cells. It is only a small shift in attitude but it really made a difference to how I approached my treatment and took away some of the dread.

Blondie

28

Hi Everyone

Just heard that my hickman line goes in on Weds still waiting for chemo appt - postal strike- I’ll ring them cos I cant wait… although it will all be at a different hosp which means getting to know new team…

I am sure there are going to be load s of people stressed out this week waiting for results appts etc blast the postman…

29

Hi Girls,

New here.

I was diagnosed with liver secondaries September 2006, discovered on my 5th year check up from my primary diagnosis in 2001 aged 38. Felt fine and well at the time so I was completly shocked.

I have a great Oncologist who always examins me throughly. She thought my tummy felt harder than normal, but thought it may be my muscle as I play alot of golf. Gave me an ultrasound to be safe and there they were!

I have been on Herceptin and Capecitabine chemo for a year now and the tumour is still shrinking. I also had one in my neck which dissappeared and one on my spine and ribs too, which also went.

You ladies have given me lots of inspiration and hope and have also given me determination.

Golf does aggrivate my feet though as the Capecitabine makes them raw and sore. Still I am still able to play and I am still here to live another day!

Love

Paulinepx

1 Like
30

Hi All

Good luck on Wednesday Wisdens with your hickman line. Hopefully you will be finished and home when I start my first Taxotere at 2pm. I have had 3 x FEC so far, and gotta have 3 x Tax, so halfway through. I know that it is going to zap the b******s and not worried about that, just a little anxious about side effects from reading all the posts. But hey ho, everyone is different so just hoping I do as well on Tax as I have done on FEC.

Blondie thanks for your support to and everyone else, it does help to speak to others on here that are in the same boat as me, or have been there, or further down the treatment line. And to hear the good news from others and how many years on they are gives hope to us all.

Will let you know how I am after Wednesday, although wondering what time will get home, as read that takes an hour to prepare your chemo (once bloods been checked) and know it is an hour to be given. I am hoping that it is not true about the hour to prepare it as got my neighbour looking after Jack and my friend having Sophie!!!

Anyway, hope everyone is well and catch up soon. Wisdens, take care and let us know how you get on. Hope you are OK too Kay.

Love
Dawn
x

31

Good luck to Wisdens & Dawn for tomorrow, will be having my weekly chemo tomorrow afternoon too.
Wisdens-I am sure you will be fine with the Hickman line, I have a PICC line and praise it every week when they take my bloods and give my chemo through it! So nice not to have bruised hands/arms.
Allie

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How did you get on Dawn? They cancelled my line til tomorrow …

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Hi All

Well back from my first tax - apointment was at 2pm, but didn’t get taken down til 2.35, then treatment didn’t start properly til about 3.20, so didn’t get home til 5.45. Long day I have to say. Was terrified, but needle in first time and the nurse said to me that normally give FEC first as people react to that, and as been so good on FEC, hopefully be OK on tax. Had a look at my notes too, and my white blood count, platelets and a couple of other things were well good, the nurse said that they were really great. Went down after before 2nd treatment of FEC, but said normal, but since then been really good. Put on a stone too!!! But good thing in my case, as was only 8 stone before!!

So, fingers crossed will be OK. Feeling bit knackered, but not use to sitting down for 3 hours without running around. Hopefully will be OK and not suffer. Said to ring them if find not sleeping or any other probs. Sleep is my main concern as got Sophie and Jack to look after, but OH off for week now. Well 4 down and 2 to go … then wot next, think Herceptin but seeing onc on 24th October.

Anyway, enough rambling about me …

Wisdens so sorry you didnt get your line yet, hopefully will go ok tomorrow. Hope you are feeling good though and keeping your spirits up.

Allie hope your chemo session went well today too (think it was today) mind a bit of a blur. Hope your side effects are minimal.

Jan and Kay hope you are both doing OK too, NOt sure what happening with you two this week, but if there is anything, hope all OK and doing well.

My little girl is still at friends for dinner, but coming home soon, sounds like she had a blast and my little boy has apparently been an angel for my neighbour who loves him to pieces.

Well take care all and as I said, hope everyone is doing good.

Catch up later
Lots of Love (sorry for rambling)
Dawn
xxx

34

Hi Girls,
just realised this thread is still going strong! Can’t believe how quick your chemo appts are - I went on mon and was there from 9am till 7pm! Herceptin and Taxol takes 6 hours to drip through, plus all the blood tests and waiting to see the onc beforehand.
Have had loads of hassle being shunted between chemo suite (day unit) and wards (where there is no incentive to get a move on, as they don’t shut at 6pm like chemo suite). For some time I have felt like a pawn in a battle between Onc, chemo suite and wards, but it was particularly bad on mon. Got put on a ward i’d never been on before and quite frankly didn’t feel inspired with confidence that anyone knew what they were supposed to be doing with me.
Anyway, only two more treatments to go! been having chemo since April.
On the topic of Herceptin, my onc keeps telling me about a lady with secondaries who went on it after chemo and is still going strong after 5 or 6 years, no recurrence.
Also, you may have seen my other thread about my good news from scan result - he also used the word necrosed tissue for what’s happened to my tumour, and he seemed very pleased. he said it was shrivelled and dead tissue.
Lots of love and supportive vibes going out to you lovely ladies,
keep your chins up (I’m certainly getting a double one - steroids make me stuff my face!)

Jacquie xx

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Dawn
Glad it is all going well so far but your comment re sleeping did remind me of feeling really ‘high’ (not sleepy and really restless) for a day or so after treatment. I seem to remember that it was the steroid drugs that you have to take for a few days after treatment (to stop you feeling sick) and I changed the time that I took the drugs so that I wasn’t taking them last thing at night and then, when I could - as I didn’t feel too sick - I didn’t take all the tablets as I didn’t need them. Obviously I discussed this with the nurses and cleared it with them first. It’s strange as I had forgotten all about all the tablets that you have to take home with you, it seems a world away now - long may that continue!!

I am glad that you have got those supportive friends and neighbours around, it sounds as though you are going to need them, coping with two small children and chemo too - you are amazing.

Blondie

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Hi All,
I had my quickest appointment yesterday, I didn’t need to see the onc so I had an afternoon appointment. They took my bloods and I had my weekly EPI and they reconnected the 5FU for another week in less than 2 hours! I think this is a record I am usually there for at least 4 hours mostly just waiting around as the chemo only takes about 15 minutes to sort out. Also I am having very little in the way of side effects now just watery eyes & nose so I am feeling prety good. I am off to the Isle of Man tomorrow for a weekend break, praying for calm weather so the ferry crossing isn’t too rough or I wil be giving all my anti-sickness tablets out!!
Dawn, glad to hear the Tax went well, I have my fingers crossed that you don’t have too many side effects too.
Wisdens-good luck for today
Jacksy- Crumbs I think I would go crazy having to be at the hospital for all that time but only two more to go! When does your finish? Mine is 14th Nov if all goes well.
Take care all,
allie

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Hi All

Sorry not posted to much today, but although not been too bad after yesterdays tax, no sickness or anything actually, and was sleeping quite well until two muppets had us up a lot in the night. Sophie came in about 3 times and put back twice, and then little Jack was up for about 2 hours, everytime put down started crying, eventually in our bed, but that didn’t work and then back to his cot and thankfully went to sleep, but has not helped any of us today. Sophie been really miserable and crying lots as tired, been pain since come home from school and Jack not 100%. Roll on bedtime and hopefully good nights sleep and all be ok tomorrow.

Feeling bit emotional I have to say, probably mixture of all sorts though and feeling really scared again about my future and all the what ifs.

Sorry for rambling, but needed to do it. Also forgot to take my steroids til 7pm tonight - bit of a shit really, but hopefully so knackered won’t make too much difference. Thankfully both little ones in bed by 7.20pm and not a peep … keeping everything crossed.

Hope everyone is good today and having a better day than me - although as all sleeping not too bad now and off to bed soon.

One good thing, critical illness has paid out …

Wisdens hope you got on OK today too and that everyone else is doing good. And Jacksy keep up the good news posting as they do help us all so much.

Allie hope you are doing good, have a fab break on the Isle of Man and enjoy yourself you deserve it. Kay, hope you are doing good too and anyone else I may have forgot to mention, am brain dead right now. Long day with the kids I can tell you …

Sorry for rambling to you all …

Lots of love
Dawn
xxx

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Hi All

Got my line in rocked up at 8am went home 6.30pm what a long wait … they wouldn’t let me go til I had appt for my avastin and taxol…well its booked in for pre chat mon and 1st med on weds 2nd med on thurs just in case you are allergic to one then 3wk break and they’ll give it together.

Dawn hang in there … those damn steroids… the kids prob pick up your emotions so everything goes round and round… let OH take the reins for a while… difficult I know . I know you have many friends just remember they WANT to help and it is much more difficult to TAKE help than to give it. Try and get a nap as soon as the little ones are asleep don’t rush round the house doing all the housework it really will wait dust only goes so far … and noone notices if the ironing isn’t done…

Take care of yourself lots of love

39

Hi all

Sorry not to have posted recently - been in a bad place because of a crisis at work with a colleague. She’s junior to me and I offer her advice/support (but I’m not her line manager) - she complained quite aggressively that I hadn’t responded within 24 hours to an email she’d sent me. Luckily my boss has been incredibly supportive and clearly feels her behaviour is at the very least unreasonable. However it raised all kind of emotions for me which I found difficult to deal with - I just couldn’t believe someone I’d worked with for 5 years, and considered, if not a close friend, at least someone I got on well with who knew about my health and the fact I was working reduced hours, could have reacted like this and said several really cruel things to me. However I feel more like the normal “me” today (despite having had chemo) and hope I can put it behind me. We need all our strength to fight the cancer!! It did even make me question though whether I should be working but I know today that this is exceptional (most of my colleagues are very very supportive) and when I’m with the children, they really lift my spirits - and that’s why I want to carry on working for as long as I can and indeed will. Hopefully for many years more.

So what have I missed?

Dawn - really glad to hear your first tax has gone ok (even if the children sabotaged your sleep!!). I still think taxol (which I believe is similar to taxotere) is easier in many respects than FEC (which I had 5 years ago). The nails are the main problem for me at the moment, though my blood count is getting increasingly low (they give me neulasta once every cycle to give it a boost). I think it’s harder on things like that than the FEC is. And Wisdens is right about the housework - enjoy the children, sleep when they do and ignore the dust and ironing (or get friends or o/h to do it - mine has got very good at ironing his own shirts after 30 years of me doing it, tho don’t know how he’d cope with all the little children’s items!).

Wisdens - what a long day for you yesterday but at least you’ve got your line in and a date for your chemo to start. I wonder why you are having it every 3 weeks whereas I have it weekly - don’t know what the different advantages/disadvantages are. Maybe it’s just different onc’s views. Let me know how you get on.

I’m like you, Jacquie, with long chemo days - it’s slightly better now as they’ve decided I’m not likely to have an allergic reaction to either the Avastin (which is a bit like Herceptin) or Taxol, so they are giving me both at a faster rate (the taxol I now have over an hour). But the first few sessions (I’ve got 18 weekly with every 4th week off) were really long - 9.30 until 6 or 7. Now I’m usually home by 4ish but it still feels quite a long day. And brilliant news about your scan - that’s what my next scan is going to show!!!

Hi Pauline too - good to hear from another determined lady (with liver secondaries). Like you I was feeling really well when blood tests picked up the fact “something was up” - I’d spent Easter walking 84 miles along Hadrian’s Wall. Golf isn’t my game but I’m still trying to do some walking at least every weekend - sometimes it’s just a couple of miles now but it does make me feel better and I always sleep better afterwards. Do keep posting - I too get inspiration from hearing from everybody else.

Hope you had a smooth crossing to the I of M, Allie, and enjoy your weekend. I’ve never been but have heard it’s lovely. Hubby has just booked us a flight to AMsterdam for over half term (using up his air miles) which should be really good.

Think that is enough! Hopefully I’ve not forgotten anyone/anything. Keep on posting ladies & take care of yourselves. Love Kay x

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Hi Kay

Just sent you a mssg these threads are difficult to find so sorry about work colleague… just think how guilty she is going to feel… yes she willl…no doubt about it.

Big hug.