Anyone else with liver secondaries?

Hi all

Glad to hear you are fine Jane!!

And good to hear you had such a fantastic weekend Dawn even if Chicago wasn’t quite what you hoped for. And your holiday should be great - when do you go? Know it’s early April like me but can’t remember exactly when.

Not working today (never work Thurs) and quite glad as I have been tired this week despite the reduced hours. Think it is the emotional side of it all as I see people again. It has been good though to be back, particularly seeing the children and the team I work with. The therapist who has been covering for me is going to continue until the school holidays, so I’ve got a chance to settle back into the routine very very slowly! And it is nice to get out of the house as well (particularly given the state of my house at the moment…).

Went to see my GP this morning as my wound still hasn’t quite healed up in 2 places - keeps opening up again. SHe thinks it’s ok though (just taking its time because of the chemo, particularly the Avastin) - just a possibility that there’s a deep dissolvable stitch that hasn’t dissolved. So got to give it another couple of weeks. Wish it would heal as it just keeps reminding me of the whole op saga and could do with putting it behind me. ALso want it better for my holiday in 2 weeks time…

Glad you had some good news from your onc, Tracey - it’s always encouraging to hear of new drugs coming through though don’t think Tykerb will be any good for me as I’m HER2-.

Anyway must tackle some jobs around the house, then can relax and enjoy the long weekend - got a ruby wedding do on Sat and a 21st lunch do on Monday, so lots of celebrating/drinking/partying!

Hope everyone is ticking along ok

Lots of love

Kay xx

Jane, so glad to hear you haven’t had any bad news! Nice to see you read our twittering too.
Had a quick scan through, now off for a bath bafore watching dispatches (I think!) about Shannon Matthews.
Have a good weekend everyone, have fun and eat more chocolate than you should - I certainly will.
Love Jx

Hi all,
sorry I haven’t been around for a few days have been in hospital!
645 Tuesday morning had what you can only call an “Excorcist” moment. got up to go to the loo and the next minute I was throwing up blood and coffee grounds. Thank God OH there to call ambulance. Rushed to A& E, they checked my Hb which was 8.4 always been very proud of Hb about 12 esp as am veggie. So I was admitted to a hectic medical ward given 4 units and booked in for a scope that afternoon. They found extra veins had been growing because of my portal vein clot and because I had been taking anticoagulants they had bled. Anyway very handsome reg tied them off with elastic bands via the scope and I was sent back to ward. I was transferred to the more tranquil chemo unit and I had diamorph via a pump which made me very sleepy but had had a couple of restless nights so really enjoyed the sleep. Had another 2 units over night and was let home yesterday.
It was a very scary experience, don’t what have had happened if hubby was away working as he had been, I try not to think too much of that, anyway now I’ve put you off your easter eggs I’m going back to lie on couch and groan!
Allie

Oh Allie

Poor you - sounds horrific, and very very frightening. As you say, thank god your OH was there to phone for the ambulance. Dawn and I were chatting on Thurs and saying we hadn’t heard from you recently, but we decided you were probably zooming around the country in your mini, being your normal frantically busy person! Little did we know.

Does your treatment stay the same now that he’s tied the veins off (glad he was handsome - you obviously were still aware of that!!!)? You must be glad to be home - I always find sleeping in hospitals difficult thpugh sounds as if you might have been too drugged up anyway!

Take care of yourself - let your OH run around after you - and enjoy the couch!

Lots of love

Kay xx

Oh Allie

So sorry to hear that you have been in hospital and not very well. I was saying, as Kay said, that we hadnt heard from you recently and not seen any postings that you were OK. little did we know. I hope that you are now feelin heaps better and am so glad to that your OH was home. How scary that would have been, not that it wasn’t scary.

If you need anything, and I can help, then let me know.

Make sure that you rest lots now and let your OH take good care of you. Make sure you leave that mini parked up.

Lots of love to you
Dawn
xxx

Allie

Thats horrible…I am glad to hear you are back at home in one piece

I hope you are resting and feeling a bit better

Glad your OH was at home to help…I know what you mean about that.

Take care
Love
Cathy

Hi all,
Well had a lovely, Easter weekend off doing nothing but back to work now. I had appt to see con onc today and she took lots of time to go through everything that has happened. The upshot being that I stay on a reduced dose of Clexane for another two months to get rid of clot. My liver looked great on the last CT but my timour markers are steadily going up so I am to stay on Zoladex inj, stop Femara and they are starting me on Xeloda from tomorrow. I was given the choice of that or Taxol and as I am due to be matron of honour at friends wedding in May thought I might like to hang onto my hair! I’m so vain … Also hopefully I will be able to manage to keep working through the season too.
Anyway, not much other news at the mo, I just hope the Xeloda works for me as well as it has for others, starting to run out of options…
Looking forward to our meeting in April
Allie

Hi Allie

Really good to hear that you are feeling well enough to be back at work. However not so good that your tumour markers are creeping up again - really hope that the xeloda does work well for you for a good long time. It certainly seems to work extremely well for some (think it’s what the onc has in mind for me from what he said, once the megace starts to fail). being aware that the options are beginning to run out is very scary isn’t it? So fingers crossed that you tolerate xeloda well and that it gets those tumours under control!

Also looking forward to seeing everyone in April - not that long now, particularly given I’m away for a week before then!

Hope everyone else is doing ok - haven’t heard from you for a while Jacquie. Trust that’s because you are just too busy working and socialising! And should think you are busy getting ready for your Florida trip, Dawn.

Love to all

Kay x

Oh Allie

xeloda is a really really good drug and then there are other options after that, but I am sorry that the hormonals did not last long, I probably would have chosen the xeloda myself for just the same reason, I hope this works, and i suspect I am about three months away from the same conversations myseld, as tamoxifen failed for me.

Doing lots of work here and begiinning to get abit fed up here with my employer asking alot at this time without giving any effective support here…so having a bit of an attitude problem

Anyway like you I amlooking forward to our meeting.

love to all
Cathy

Hi Kay & Cathy,
I was really expecting the Femara not to work as Tamoxifen didn’t, so in a way I’m quite glad to be on Xeloda as its the same family as 5FU which I tolerated not too badly. Still also got Taxol as a spare one if this fails!
Cathy, Sorry to hear the work is driving you mad, I’m still catching up on paperwork etc too, it drives me mad. Our new unit is up and running now but got lots of teething problems, such as the cold tap becoming stuck on, a wall heater broken etc.
Had a quiteish Easter in the shop but lots of wholesale orders to keep us busy.
Well off to make tea
Take care
Allie

Hi All

Well major major work thing is pretty much finished for now - one more big deadline at the end of next month, I think i can cope with it as have now had decent nights sleep etc, but not sure how long I can keep this up for, i think they are pushing it a bit with the stress i have been under over last two to three weeks, its not really reasonable,

Allie - hope your new unit isn’t as bad as first day at terminal 5 ! I was supposed to take my first work trip after chemo on that day but cancelled it as project got on top of me, probably just as well. How is it going with the xeloda? When do you have your first dose ? I have been looking at some other posts on the site and there have been people on it for years…which I think is encouraging, it seems like its all a question of getting the dose right. I have actually eaten more chocolate than i have in years - so if i could have made up the shop orders for you,

dawn I hope you are sunning it in florida already, really looking forward to hearng about your holiday.

Kay how are you? How is it going at work ? Its difficult trying to get the right balance but its great being out and about and seeing people etc, I would think especially when you are doing something that is worthwhile,I cant quite put what i do in that category!

jacquie how are you?

well everyone take care- off to see what my OH has cooked up for sons tea.

Cathy

Hi Girlfriends,
Sorry I’ve hardly been here. We went away for nearly a week to our favourite haunt in Suffolk. The two older kids had lots of homework and revision, so we hardly did anything. Just the odd walk/bike ride and a rather successful trip to TKMaxx in Ipswich! And of course loads of chocolate and DVDs.
Went to go out last night for my OHs birthday and couldn’t do my skirt up! So depressing. My skin’s terrible - I’ve got red rash above my eyelids and on cheeks and hands and it’s so sore. Not sure if it’s the Tamoxifen - seems to be getting worse. And my hair looks completely stupid. The back and sides are okay but such tight curls on top there’s no way I’m taking the wig off. So, all in all feeling a great fat frump.
Sorry to moan but I’m really fed up with it all, especially the steady weight gain.
Anyway, I can’t wait to see you all again soon. Allie - sounds like you’ve had a terrible time. I’m glad things have settled down now. Cathy, please try not to work too hard. It’s just not worth it… Kay, how are you getting on with your new treatment?
I saw on another thread that Tracy’s been jaundiced - that sounds scary for her, poor thing. Let’s hope Dawn’s having a brilliant time. Not exactly Florida but at least we had sunshine today!
Lots of love to you all
Jacquie xx

Hi all

Was wondering how you were Jacquie, but thought it might be the school hols for you. We’ve got this really funny arrangement here where we’re back after Easter for 2 weeks and then have the 2 week so-called Easter holidays!

I’ve put on yet another 1/2 stone since January which is really depressing - and my stomach muscles now are definitely completely non-existent. So I’ll join you in feeling really fed up about it all - we can be 2 “great fat frumps” together.

Allie and Cathy, you both sound as if you are working far too hard. Please take care both of you. I’m really trying to get the work/home balance right - something I’ve never really achieved in the past - and was very pleasantly surprised at a meeting last week with my boss and a new lady from HR. They have put lots of things in place for me next term so that I don’t overdo it. But as they kept saying, I’ve now got to follow them! What I’ll have to wait and see is whether the workload reduces as much as it needs be - no good telling me that I should go home early twice a week, if I’m then having to cram twice as much work into the time I’m there.

The new hormonal treatment (Megace) seemed to be going ok until I started bleeding - bit of a shock after 5 1/2 years! Did go and see the GP (but not my usual chap) for a bit of reassurance but didn’t come away feeling reassured at all. She started talking about HRT and how you can bleed for 3 months on that before “they would do anything”! I was not filled with confidence that she knew anything about Megace at all. So I’m trying to work out how worried I am and whether I should contact the onc or the onc liaison nurse, before we go off on our cruise on Friday…

Really looking forward to meeting up again - hope Dawn brings some pics of the children at Disneyland!

Take care

Kay x

Hi Kay,
Yep, I guess I’ve put on nearly one and a half stone all told, and about 4 lbs in the last week! Bl**dy depressing.
Your bleeding sounds worrying - is it still going on? You could always phone your onc’s secretary and ask for a chat on the phone. You don’t want worry to ruin your brilliant hols. Your GP sounds a waste of space. You’d think they’d just say -‘this is a specialised area, I don’t know, I’ll find out’.
Now you take it easy at work too - if they try to pile too much work on you, just give it back!
Lots of love
Jacquie x

Hi Jacquie

On line at same time almost!

Can I join Fat club ? I have put on about 9lbs with this crap and thats conservative…

Kay-if it were me I would call- only because it would give some peace of mind whilst on holiday, GP is totally out of order blah blahing about three months, this is nothing to do with HRT! Sometimes they just try to reassure when they dont know anything,

Hope Dawn isnt at terminal 5 - think she will be OK as international flights join that fiasco next week

take care
Cathy

Hi all

Thanks for your messages, Cathy and Jacquie. Think you are right and that I am going to worry (tho does seem a bit lighter today) - have to say that is why I went to see the GP last week and just came away p***d off. Am due to have my port flushed on Wed morning, so think I will try and catch the onc liaison nurse then - she’s very sensible and knowledgeable (though pretty impossible to get hold of by phone). Logically I am sure all is ok but (though I am really looking forward to my holiday) I am if I’m honest quite anxious about it all as well. And - as ever - I feel better now for having a plan!

Really tired this pm after working this morning - think it must have been the change in the hour. Also had had a busy weekend - out Sat evening with friends and then went to the ballet (Romeo and Juliet) yesterday afternoon. Getting this balance right is quite difficult isn’t it? My problem is I feel fine when I am at work but then can just feel absolutely shattered once I leave (and I still have a distance to drive down the A3). Still only working tomorrow and Wed, and then off for 2 1/2 weeks.

Hadn’t thought about Dawn being at terminal 5 - hopefully she flew from another airport.

Take care all

Kay xx

Kay

Just briefly, I had a dreaded smear last week - well, attempted!! (but we wont go into that one!!)
Anyway, I’ve been on Tamoxifen and Zoladex - havent had period since October last year - but when she put the contraption in (TMI), she had to stop because she was making me bleed. Silly Woman, I thought!! But what she said was, that hormonals do do that to you.
I know that its not the same thing but as you are quite new to Megace, then its just a thought.

Hope that everyone is doing ok - this thread has gone a little quiet at the mo!!

I’ve got my date for my oophorectomy - it started off as 11th April, but has now been changed to 17th. The sooner the better.

Anyway, take care girls

Love Anne xx

Hi Anne

Thanks for that info - think these hormonals do do odd things to us! Know I bled for a while when I started on Tamoxifen but can’t remember now how long for (or how heavy it was). So anyway, will mention it when I am at the hospital for the port flush tomorrow and see what they say. Just want some reassurance really particularly as I will be away on my hols and don’t want to be fretting about it then!

Your smear sounds a nightmare! Do you have to go back again? Hope not. And good luck with the oophorectomy.

It has been quiet on here recently - it’s that Dawn really I think! She’s been busy partying and getting ready to go away (and now away) - not posted anything like as frequently. Can’t blame it all on Dawn though - I’m finding it harder to keep up with everything now I’m back at work etc.

Right…must go and iron some of my summer things ready to pack (just to make you feel jealous…)

Love to all

K

I haven’t been on here for a while. Everything was going well and I was moving on. In November 2006 I had 2 lumpectomies, no lymph node involvement and it was a very small tumour but ER+ and HER2+. I had radiation but my surgeon and oncologist felt I did not need chemo.
I made a brilliant recovery, felt great, took up dragon boating and 3 weeks ago, on March 16th, ran a half marathon in Bath. Life was sweet!
Then I started feeling poorly and thought it was an IBD flare up. My gastro enterologist did an abdominal ultrasound which showed an enlarged liver and multiple masses. They suspect mets in my liver and I have done the blood tests and C/T scans. I did L/spine MRI and bone study last week and a core liver biopsy-most unpleasant- yesterday . I am meeting with the oncologist on Tuesday and he wants to start treatment on Wednesday. Today , I went wig shopping with my husband and daughter. How did I get so ill so fast?
My stomach is getting bigger by the day and I have pain under my right shoulder blade and ribs. I guess none of us are surprised at the way the human body can deceive and betray you. One day you’re running 13 miles and the next it feels as if you are running for your life. I’m hoping for the best but preparing for the worst. Anybody else out there been in a similar situation? I am holding together pretty well. It is what it is and now I have to get on with the project in hand and fix myself.

hi Carolina

sorry to hear your rotten news, its a crazy disease but remember to stay positve good luck with your treatment. Lots of the ladies on this forum have had secondaries for years so I am sure you will get lots of support.

love DebsinCornwallxxx