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Liver mets - new thread

lizH
Member

Re: Liver mets - new thread

Thank you ladies for the support...

Bev, good luck to you too! I am having taxol each week for three weeks with a week off.

Going to ask if I can have the cold cap , see if it helps with keeping the hair!.

Liz xxx

Bevlaar
Member

Re: Liver mets - new thread

Hi liz...I'm starting taxotere on friday too after capecitabine failed after just 2 months. Good luck to both of us! xxxx
Hilsy
Member

Re: Liver mets - new thread

Hi ladies and welcome! Can I ask how longvitvto for Cape to start working on your tumours? Ps are you all on the capecitebine side effect forum? I find it so useful and you know may too. There's a bit of a toe-gate scenario going on! X
quality_street
Member

Re: Liver mets - new thread

hi Liz, Like yourself, was very scared initially . Was offered 3 choices of chemo , including taxol. Decided to go for Cape and keep my hair on!! Anyway , it's working a treat so far and I know that there are lots of other treatments available if this one doesn't work. Good luck xxxxxx

Jo_BCC
Member

Re: Liver mets - new thread

Hi LizH

 

Sorry to hear you're feeling frightened, if you need to talk to someone in confidence then please don't hesitate to call the helpline here, the staff are here to support you both practically and emotionally.  Lines are open weekdays 9-5 and Saturdays 10-2.  0808 800 6000

 

Take care,

Jo, Moderator

lizH
Member

Re: Liver mets - new thread

Hi quality,

I was diagnosed with liver mets a couple of weeks ago so I am still feeling pretty frightened.

Starting taxol on Friday .

Great to hear that you are having successful treatment with Cape .

All the best,
Liz x

quality_street
Member

Re: Liver mets - new thread

Hi, not posted on this thread before . Have had liver mets for over 2 years now. Was on Cape for 18 months which shrunk them to neglible. Then had 6 months hol from treatment, which was fab. Back on Cape now as signs of regrowth but not too bad according to onc. Scan next week, am just starting 4th cycle. X

Hilsy
Member

Re: Liver mets - new thread

Hi livery oaks hope you're doing ok. Was wondering if anyone is on combination of capecitebine/xeloda and lapatanib/tykerb? I am and my lung tumours have shrunk a teeny bit but liver tumours growin?! Though I had only had lapatanib 1 week when they scanned and 3 cycles of Cape so wondering if any stories from others? Thanks ladies lots x
EJ81
Member

Re: Liver mets - new thread

Thank you both. Wish I'd been given a portacath! I'm bald too Nicky! Funnily enough that doesn't make me half as grumpy as finding out I can't fit in the lovely winter coat I treated myself to in the sales this spring - Bloody steroids! Can't wait to be rid of this PIC line as it needs flushing every week and I can't get it wet. Would really love to go swimming. Thanks for the info. I will definitely push for one another time. If there is one, staying positive!! xxx

nicky08
Community Champion

Re: Liver mets - new thread

Hi EJ, don't worry, as Porkie has said, ask anything! I have my port in my chest which for me is a bit obvious but if I wear the right clothes you can't see it. It's been great since having it put in place in August before IV chemo started. Once it had healed, and the bruising went down, I've had no problems at all. It gets flushed when I have my 3 weekly chemo/Herceptin/Perjeta combination and it is completely sealed so no risk of infection. The chemo nurses are very particular about cleaning it before using it as well as that would be the only way an infection could get in. It really has made a huge difference having it done as I have no anxiety at all about getting a cannula in, which used to happen, and makes the whole process so much quicker and easier. I was given some local anaesthetic cream but to be honest its so numb I've never had to use it.
Nicky x
Ps I'm with you on the grumpy front today but add bald to that as well 😉

Porkie
Member

Re: Liver mets - new thread

Hi EJ81 Im sorry you are feeling a little yired this morning and you are not grumpy! That is what this forum is for to ask questions and moan when you need to! I have a portacath in my arm just inside down from my elbow. It is brilliant - I dont realise its there and can swim, shower, bath - do whatever I want. It needs to be flushed every 4 weeks. At the moment I am on herceptin every 3 weeks so they flush it for me then after treatment. Would not be without it.xx

EJ81
Member

Re: Liver mets - new thread

Sorry if that was more moan than question. Feeling a bit tired, fat and grumpy this morning!!
EJ81
Member

Re: Liver mets - new thread

Can I ask whether the portacath needs weekly maintenance (flushings, dressing changes etc) like a PIC line? I'm guessing it doesn't but would be interested in knowing for sure.
Also can you swim with it? I really miss swimming and have put on loads of weight thanks to steroids. Would have been near the end of my original chemo but now not even half way through the new one. Am considering asking about a portacath again if anything else changes or I need more IV chemo in the future.
Thanks xxx
lizH
Member

Re: Liver mets - new thread

Thank you for the reply Sarah ,

Looking forward, if that's the right word to the portacath as I get very stressed with my veins.

I have decided to go with taxol weekly and knock it big time, hopefully!!

Sending luck and best wishes to you.
Liz

SP0
Member

Re: Liver mets - new thread

 

Hi Liz.

 

I have a portocath too.  Had it inserted under local anaesthetic and have never looked back.  It's close to my collar bone, so shows in some necklines, but no-one ever seems to notice!  It's hugely beneficial when having regular iv treatments.

 

I too explored all kinds of innovative treatments for liver mets with my onc, but actually, got a really good response to aggressive, traditional chemo and herceptin.  The liver seems to be an amazing organ.

 

Wishing you luck... Sarah.

Gillg78
Member

Re: Liver mets - new thread

Hi liz,

Sorry I can't help with your friend. I have the normal suggestions of diet Ect but so far no treatment advice from friends. They have little awareness of SBC never mind options.

I would be interested to hear from anyone that has had SIRT treatment for liver tumours though if there are any out there?

G
lizH
Member

Re: Liver mets - new thread

Thanks EJ! I am going to go for it ! I shall ring consultant on Monday and try and get it done before the first round is set up.

Anyone had the chemo that is injected straight into the liver? Or surgery ?

I have a friend who , I know is doing it for my benefit but is bombarding me with different things that he has researched. He lives in Prague and has asked if the proton therapy was any good for me.

It is sooooo difficult as I know he is worried about me but it's making me stressed out !


Anyone else with friends or family lke that?!

Much love

Liz xx

Hilsy
Member

Re: Liver mets - new thread

Thanks lots hugs x
EJ81
Member

Re: Liver mets - new thread

Hilsy and Gillg, so glad you're both more rested now and enjoying married life. Xxx
EJ81
Member

Re: Liver mets - new thread

Liz you lucky thing! bet you didn't think anyone would be saying that to you now did you!? - I really wanted a chest port and kept asking and being put off and then got told it would delay chemo if I wanted one done as its a bit more specialised than a PIC line, which is what I ended up with. There is the scarring to consider (my onc kept telling me this until I had to politely point out that with one boob I wasn't going to be wearing many v necks anyway!!) but if it was me I'd go for it. Xxx
Hilsy
Member

Re: Liver mets - new thread

Glad you're feeling more rested wtc hill and hope you love being a Mrs. I Love it and after the tiredness etc it vrought and now resting more not worrying about plans! Hope your liver behaves its self and diet change helps. I'm trying to be more healthy now too and look after the healthy pieces of organ which prib didn't like all the chanpagne and chocolate being forced (lol forced) onto me! X
Gillg78
Member

Re: Liver mets - new thread

Well a week of resting I feel much better, physically and emotionally. Changed my diet this week also eating smaller low fat meals and liver pain certainly has died down.
I have had pain return in my spine and broken shoulder after having rads about 10 weeks ago, I am trying not to jump to conclusions that it means further spread and hoping that it actually means healing as some people have suggested.
3rd dose of docetaxel on Tuesday and then scans to find out what is happening next. It feels like a forever waiting game. Not really suffered any serious side effects with first 2 so fingers crossed...

Hope your rested now hilsy! And enjoying being a Mrs...
lizH
Member

Re: Liver mets - new thread

Hi Nicky and Bev,

Thanks for the info Nicky, it all helps. I have one good vein that normally behaves but the other day it just ran away from the nurse and she had to in deep, oooouuuuchhhh ! Hopefully I can get one in before I start.

Sending my best to everyone. Such amazing support.

With love

Liz x

nicky08
Community Champion

Re: Liver mets - new thread

Hi Liz, yes, I think we all know the mind games our brain likes to play - especially in the early hours. I usually find that once I had a treatment plan in place that it calmed down, hope that happens for you. As to the portacath I had one fitted just before I started this new round of IV chemo and it is soooo good! No hunt the vein, they just plug you in and away you go! The chemo nurses like them as well as they are so easy to use. I had mine done under local anaesthetic and mild sedation but some have them done under GA. Thry can used the same day but I has mine done a week or so before my chemo started. Only thing for mine is I wish it was a bit lower down as it's a bit obvious if I wear the wrong, lower neckline tops. I did ask about the smaller one that can be fitted by the surgeon who did mine said they'd had greater success with the normal sized one, also some ladies have had the smaller ones fitted near their elbow but again, the hospital where I had it done fits them to the chest. You can have bloods taken from them but a special needle has to be used so the chemo nurses usually do that rather than 'blood' nurses plus a power port can be fitted that CT dye can be injected through but, again, this wasn't offered to me. I still have one good vein that I have blood taken from in my arm and can get the CT dye in as well so I'm just using the port for chemo.
Hope you can get some sleep and some reassurance and feel a bit better.
Nicky x
Ps edited dye to typo, wrote Luz, not Liz!

Bevlaar
Member

Re: Liver mets - new thread

Hi liz.. sorry to hear your news but we're all here if you need us...just rant away if you feel like it!
Try and keep positive...it does help even though its hard at times. We all know what you're going through and will help if we can.
Sending love and hugs. ...bev xxx
lizH
Member

Re: Liver mets - new thread

Morning ladies,

My consultant said I could have a 'portal'? Up in my chest so they could admin drugs better. Veins bad!

Anyone had one of theses?

I must have got some sleep last night but am wide awake and the brain is not stopping, isn't it awful.

Love to you all

Liz xx

EJ81
Member

Re: Liver mets - new thread

Hi Liz,
Sorry to hear your news. Like the others have said there are lots of treatment options for liver Mets. I'm on weekly chemo right now and finding it quite manageable, as long as I remember to pace myself. I hope you feel better about it all once treatment starts - mentally it always feels better once something is being done doesn't it?!
Take care xxx
nicky08
Community Champion

Re: Liver mets - new thread

Hi Liz
Yes, I'm still here, albeit with liver mets to add to my bone mets however I was stable with bone mets for 5 years and so far my liver mets have shrunk on Capecitabine and I hope they get more of a blasting on docetaxol. I had a horrendous year last year with lots of heart problems caused by FEC chemo 6 years ago but have eventually been able to get on the combination of treatment I should have had some 18 months ago. My receptor status has changed from HER- to HER+ which I found out when I requested a liver biopsy. It may be worth considering having one done but let this initial shock settle down first. It's not a pleasant procedure (which ones are?) but I'm glad I had it done as my treatment plan is now right for me whereas it wouldn't have been. I'm still strongly hormone positive as well so this will be part of my ongoing treatment once the chemo is finished. Feel free to ask me, and the other ladies, any questions you have, I'm sure one of us will be able to help. Take time to adjust, you would have done so 4 years ago when you had your bone mets diagnosis and it takes a while to take information in.
Take care
Nicky x

lizH
Member

Re: Liver mets - new thread

Hello nicky and Helen , thank you so much for you quick response.

I think I remember you nicky when I was diagnosed 4 years ago when I got such help when I was a new case.

Your words are so helpfull I find it so emotional that you ladies are all here giving advice when you have trouble your selves .

I hope you are all coping and perhaps when I am in freighting mode , soon I hope! That I can ask for help with side effects ect.

With much love to you,

Liz xx

2catlady
Member

Re: Liver mets - new thread

Hi,liz,glad you found the thread. I'm on cap for my liver,lung and bone mets . I haven't had any of the "big guns" chemo yet and cap is my first ever chemo. I'm hoping cap will do the job. My spread happened after a year from double whammy of bones and primary last June 13.Only found out as insisted on CT scan as I hadn't had one for a year.
Glad Nicky has mentioned liver responds well. The liver is a huge organ that can cope well with mets.
Huge hugs,Helen xxxx
nicky08
Community Champion

Re: Liver mets - new thread

Hi Liz
Sorry to hear news of your spread. I had the same news last year after 5 years of 'only' bone mets. From what I read at the time and still understand the liver can respond very well to chemo to the extent that NED is achievable, something we'd all like to hear. I hope you cope OK with weekly Taxol, I'm currently on 3 weekly Taxotere and although a tough 1st cycle it's been quite doable since. Hope I don't have to eat my words as currently having 4th cycle right now,
Good luck and I'm sure one of the other lovely liver mets ladies will be along shortly to add support.
Nicky x

lizH
Member

Re: Liver mets - new thread

Hi ladies,

In a dark place as just had the news of spread to liver.

Taxol starting meek week.

Need some help.

Thank you

Lizxxx

Hilsy
Member

Re: Liver mets - new thread

Hi Gill as the second bride I wanna reassure...day after my wedding I was in bed all day shattered, poorliest ive been, massive migraine...next day a bit better but coming down with chest infection again then yesterday real zapped weak and awful chest infection and today exhausted. We both planned weddings on adrenaline and feeling poorly erg and now the come down., really hope you feel happier soon after it all. Me too it's done me in massively but I'm gonna chill a while to get energy back. Hugs x
2catlady
Member

Re: Liver mets - new thread

Hi,gill,you have had so much to do and of course that's why your energy levels are down. I think after all the adrenaline from big day you will crash. Don't be to hard on yourself ,just rest and enjoy.
Huge hugs,Helen xxxx
Gillg78
Member

Re: Liver mets - new thread

Thank you. I must say from sat until now I have been shattered and upset. Was extremely worried about my activity level dropping but in hindsight I have had a lot happening over the past 6 weeks. I think every bride not even given our situation has a massive come down after the day. Hopefully I can pick myself up and find something positive to get on with this week. Next stop planning Christmas! X
nicky08
Community Champion

Re: Liver mets - new thread

Congratulations to you both from me as well. I hope both of your days were really special and you had a lovely time with your close friends and family.
Nicky x

bertie1
Member

Re: Liver mets - new thread

congratulations to the two new brides so glad you both had a lovely day.
Kaye xx
2catlady
Member

Re: Liver mets - new thread

Hi,congratulations to the new Mrs,so glad you both had great days.
Take care ,huge hugs,Helen xxxxxx
Hilsy
Member

Re: Liver mets - new thread

Aw so pleased! I was thinking about you. Yup my body is now done in, we need to sleep for a week at least. And eat chocolate.....Congrats!!! X
Gillg78
Member

Re: Liver mets - new thread

I to had a fantastic day ! Loved every min of it. Very emotional and like you late steroids made it through the whole day but body feeling it now! Xxxx congratulations
Hilsy
Member

Re: Liver mets - new thread

Hi everyone I just wanted to thank you all for your lovely messages, today's wedding was the best! Still awake high on adrenaline snd yes...bloody steroids for brain lung and liver mets that i took too late so no sleep tonight! I also want to hear how you are Gillg? How was your wedding and how is the pain etc. I di so hope it was a great day and you weren't too poorly. I can't believe I got through the whole day but my lungs really aren't happy now but worth it (as long as they're better tomorrow)!
rosie53
Member

Re: Liver mets - new thread

Congratulations Hilsy and Gillg, hope you both have a wonderful day.
Hugs Janette x x
nicky08
Community Champion

Re: Liver mets - new thread

Good lucky hilsy and gill with both of your wedding days.  I hope they are wonderful and a lovely occasion for you to be with family and friends.

Hilsy - sorry I can't help with the yellowing effect you've had, I hope that you can get it sorted.

Nicky x

bertie1
Member

Re: Liver mets - new thread

Hi Hilsy congratulations on your wedding hope you have a wonderful day.
Kaye xx
Katherine2701
Member

Re: Liver mets - new thread

Hilsy, Congratulations on your wedding. I hope you have the most fantastic day ever! I can't help about the potential blocked bile duct though, sorry. But perhaps a call to even your GP might mean you can get something quick? And if you fancy a glass of wine at your wedding you have it. You'd be surprised how resilient your liver is. I'm so excited for you for your wedding. So good to hear nice news!
Katherine2701
Member

Re: Liver mets - new thread

GillG, Good luck with your wedding planning and congratulations. You know my liver mets came back larger and more numerous than originally (largest 13cms) after a year off any chemo or treatment and after three cycles of Cape they have reduced again significantly! There is lots of treatment for you still to go through. But please try to think of your wedding and what a wonderful day that will be. Those liver mets will reduce and shrink in no time. My Oncologist said that when you have liver mets they tend to think of your condition as chronic and that 'time remaining' and 'terminal' are phrases used by insurance companies that oncologists don't subscribe to. I hope that helps. Just think of yourself as someone with something like a dangerous diabetes and that you will probably have to continue treatment for a long time if not forever, but you WILL be here to take that medication and to see your babies grow up until a cure is found.
Katherine2701
Member

Re: Liver mets - new thread

Correct EllieDog as usual! I had liver mets from the start and although they disappeared they then came back even larger and more numerous. Just means more treatment!
Katherine2701
Member

Re: Liver mets - new thread

Hi Gill, when I started on Tax my largest of 'numerous' tumours in both lobes of my liver was 9cms, After three treatments all liver tumours had disappeared or were so small as to be insignificant. Don't worry about being told months, I was told weeks a while ago but they can't possibly know! Good luck with Tax. It worked brilliantly for me so chin up!
EJ81
Member

Re: Liver mets - new thread

Hillsy and Gillg, just wanted to add my congratulations and best wishes to you both for this weekend. I hope you both have wonderful, carefree wedding days xxxx
2catlady
Member

Re: Liver mets - new thread

Hi,ladies,oh wow a wedding that's fantastic and congratulation ladies. Will be thinking of you on Friday xxxxxxxx