It is hard to believe they could make such a sloppy error on the dose- 9 % could definitely make a big difference- you will definitely feel better next time. It just shows its always worth asking if you think something is strange or different, It must have been really great to take the kids away by yourself…i always find that the time I have with my son on his own is really important to my relationship, but have never done an overnight in a hotel with him (although OH has as he is prime carer).
I would love to arrange a liverbirds meet up in the general london area - I saw Dawn is volunteering her garden as well, but thats more tricky for me as work as usual is intervening and claims so much of my time. Feel a bit in limbo myself about making arrangements until next week as I am pretty sure this time next week I will be back on chemo, scan on monday. I know I have to live with that uncertainty - not easy though…we haven’t met btw - but would like to!
take care
x
Cathy
Kate there is always room for anyone on this thread, although we dont want people joining because of the position it means they are in, but “more the merrier” as they say.
Cathy good luck with your scan tomorrow. I am having one too now, and waiting for appoint for mammo too, as have had pain in left boob and getting really paranoid about it, and thinking the worst as usual, that herceptin not working so wot will be happening to my liver. So getting the full works to check it all out. Should really have mentioned to my onc last week, but u know how it is, bury my head in the sand and hope it goes away. Which to be honest the pain has gone now, but to rest my mind, going through with it all.
Sorry for not posting, but have been in that dark hole again the last week worrying etc, tears the lot.
Let us know how u get on Cathy. I have no idea how long will have to wait for my results but will hopefully hear sooner than later and will be chasing my onc.
Hope everyone is doing OK though. Kate hope u are doing OK and the summer holidays have not taken too much out of you. God knows that I cant wait for Sophie to start school full time as she really needs it and is getting so hormonal (at 4!!!) and demanding.
Hi Kate - welcome, but really sorry to see you on here. Yes . the liver is scary, but isn’t everything with this f-ing disease. I’ve been following your torrid last few months on the site and wishing you well. Hang on in there!
I’d be up for a meet in the greater London area too. I’d love to go and hang out in Dawn’s garden but work gets in the way. I swore when I went back that I was going to be disciplined about how hard I worked and the amount of travel I did (Ha ha!). Off to Spain on the 8th, France the next week, Italy the week after, short breather then the Frankfurt Book Fair. This all depends on my next scan results though - Friday 5th. If they aren’t good it may be back on the chemo for me.Hope not, but…
all the best
Barbara
Certainly not an exclusive club/thread, Kate - and (sadly) you now meet the criteria for joining us liver birds. I’ve occasionally thought about whether having mets in the liver is more scary than other places but have tended to tell myself it is just that I know much more about the potential hazards of liver mets. So it’s interesting (not sure that is the right word at all LOL) what you say about finding it scarier.
Just wanted also to wish everyone luck with their scans - seem to be lots of us having them next week (I’m still waiting for my date but expect it will be mid/late week). Particularly thinking of you Cathy as I know your tumour markers are not good and I know what it is like going for a scan when you already know things are not so good. Hopefully the results will be better than you are fearing.
Hope Sophie settles into school quickly, Dawn. Will give you a bit more “you” time (and time with Jack) which should be great.
My eldest’s birthday today (27!!) so everyone (all 5 of us and the 2 girl’s partners) is back shortly and we are going out for a meal tonight. Also will be celebrating son’s birthday as he is off travelling on Tuesday for 2 1/2 months and will be away for his actual birthday. And youngest one’s just moved into a flat in London, so big milestone for her too. WIll be very odd on Tuesday when it will be back to just me and David. Will make life a lot easier but certainly will miss them too.
Hope you are all doing something nice today - won’t be outside, judging by the weather here LOL.
Hi everyone,
What is it with all these scans and tests?! I’ve got a CT scan on Thurs to see how my liver’s faring, so I’m in the same boat with you all and feeling more than a little anxious.
Dawn, I’ve been having an increasingly ‘lumpy’ painful feeling in my left boob too (it was my right one before). I’m hoping if there’s anything it will show up on the scan, although they couldn’t feel anything in clinic (but that was quite a while ago…). So, we’ll all be thinking of each other.
Welcome to Psyche and Kate. Psyche, i agree with the others - they should definitely have scanned at the end of chemo to see the results of the treatment. Could you ‘forcefully persuade’ your parents to let you tag along next time they go to clinic? Kate, glad to hear you’ve had some time away with your kids and your condition is improving by the sounds of it.
Manon - cycling in burgundy sounds blissful. What a treat.
Yes, it’s definitely time for another liver birds meet. Shall I bite the bullet and suggest a date? What about Thursday 25th Sept? Everyone should be settled back into school and routines by then and the novelty of a quiet house may have worn off! Shall we meet at cafe Rouge in St Paul’s again?
Let us know what you all think. I’m feeling a bit desperate to see you all again.
OK got to go and tidy up the house - got some friends coming round later
love to all
Jacquie xx
Yes we do all seem to have scans - I think we have all had our scan schedule come together because of the holidays - no one wanted to order them or go for them in August (thats my theory). We can send each other positive calming thought waves - I absolutely hate lying down to go through the ring…it makes me feel terribly powerless. The only good thing is its so busy that they really get on with it once you are there. I think all of us are on for this week or the week after- except maybe Kate will be a bit later.
Me I have been trying to get into a ready to kick cancer mood- I feel that its on the move again - now that I know markers have jumped I can feel the niggling symptoms - its nothing dramatic but it is there again. kay -thanks for the good wishes, I really hope its not as bad as I fear and we all know how good the imagination is. Kay - why do the markers do that ? you explained to me what they indicate - but I dont really understand why they can be ticking up and then triple over 4 weeks.
Kate - you sound like you are really busy and doing alot with the kids before they go back to school, sounds like the taxol is doing its thing…
Manon - how wonderful to have a cycling holiday with your daughters…they sound like they are really lovely. I would really have liked to have had a daughter but it was not to be…its great that you can have that time with them…
The 25th of September at cafe rouge sounds good to me. Someone is coming from US that I have to escort around the following week…just need to double check i have that date. Having a meet up in london we can still go for dawns garden as may be some people can do one and not the other - would like to get a london date planned…
Would be good to meet but thursdays are my weekly chemo days and I think from when we were discussing mmeeting at Dawn’s, thursday is good for Manon so perhaps this time, you go for a date you can make as I can make the tuesday or wednesday dates at Dawn.s.
Honestly, we all sound so busy nobody would believe we’re ill!!
I think as you say they try to avoid doin scans in august as too many staff and patients away.
Good luck with all your results.
See you soon
Kate
Thursday 25th is fine with me too - hopefully we can arrange something so that everyone can make either Dawn’s or this meet.
My scan is now booked for Thursday - how I hate them! Now need to ring onc’s sec to arrange an appt to get the results early the following week.
Was back at work today and am now shattered - hopefully I just need to get back into the swing of things but there seems to be so much to sort out and do. Off to put my feet up for 5 minutes before I need to cook dinner.
Oh good we are getting a mini meet up arranged for the 25th !
Had my scan today - horrible but quick and efficient this time and kind nurse gave me extra blanket…they do get awfully backed up in the afternoon. results soon, not looking forward to that. will let you know what happens,
Not great news on the scan - found out for first time i have two largeish tumors and numerous small ones on my liver…not great (have always been to chicken to ask for exact measurements) - there has been quite a bit of progression from the last scan. On the good side liver function is still ok, on bad side its weekly Taxol plus avastin for me. Obviously although I knew this was coming I am still utterly devastated …kept asking him to reassure me there were other options if that didn’t work. Now I am having the fun of clearing with the insurance company,
Am really sorry to hear that your news is not good. I hope that they start your new regime soon and that it works for you really quickly and brings your liver back under control. Hope u dont suffer too much on the chemo again either. Cant believe you are having to go through it all again now. Remember am hear if you need to talk though I promise. I may not be posting much at the moment, but always read to see whats going on wiv everyone.
Thanks for msg regarding my scan. My onc on hols for 2 weeks but the BC Nurse had a look at the scans or results from yesterday and emailed me to say that they were good as showed same as last time. Whether this means there was anymore shrinkage I dont know, but probably find out more when onc gets back, but at least for me there was no growth so the herceptin is still working, which was my main concern, Still waiting for appointment for mammo and ultrasound to check out left boob, but least I can think/hope now that it is nothing sinister.
I hope everyone else is holding up. Again apologies for not posting much, but have really taken step back recently and what with my worries the last few weeks and that black hole pulling me in, I have been wrapped up in myself to be honest.
Take care all and sending everyone, specially Cathy, big hugs.
Love
Dawn
xx
So sorry to hear the news, Cathy - hopefully the weekly taxol/avastin will work well for you but even though you felt it was coming, you must be incredibly disappointed. I certainly found taxol reasonably tolerable for a lot of the time - was only the last couple of months (had 18 sessions, with 3 weeks on and then one week off) that things got more difficult. And still managed to work throughout though reduced my hours and worked more from home towards the end. When do you start?
Good luck with the insurance company - mine have agreed to pay for 6 more cycles of capecitebine but don’t want to pay for any more after that. So am feeling quite stressed about that. Am seeing the onc next week to get my scan results (scan on Thurs) so will discuss that with him too. It’s seems to be this chronic/acute debate.
Really glad though to hear your results, Dawn, and that you have got them so much quicker this time. A bit of good news at least!
Think we’ve all been in a bit of a black hole recently. I am struggling a lot of the time - not helped by the fact I’ve got a cold at the moment and my feet are still not good on the xeloda. Feel overwhelmed also by work (not unusual for me at the beginning of the school year but I am beginning to wonder whether I have made the right decision to continue). Also just feel I can’t cope with all kinds of things. Missing the children as well - C moved into London last week and M has departed on his 2 1/2 months of travels. He’s in Thailand as well which doesn’t help at all given today’s news of riots there.
Definitely think we need that “meet”. Are we settled on the 25th?
Take care all - but especially you at the moment, Cathy. Lots of hugs Kay x
Hi All you lovelies,
Oh Cathy I am so sorry to hear it’s on the move again. It’s so hard to take that kind of news. Big hugs coming your way. I am glad that you got your reult quickly and they have a plan to put in place. I found weekly Taxol not too arduous - it was the logistics of the trip to the hospital that was the problem, not the side-effects.
Kay, my CT scan’s on Thursday morning aswell, so we can think of each other, and I’m getting the results on Monday morning before a full day at work! Just hope it’s not bad news. Have had a lot of back pain for a week or two and usually if it’s muscular it would have cleared up by now… I think cos I’m feeling low I’m just dwelling on physical worries which normally I wouldn’t have time for - hope so.
Kay I can really identify with your thoughts about your son going away. S goes on Saturday and will be home for just 4 weeks at Christmas, and that will be it until next summer. I can’t look beyond a year in my mind anyway, so I’m grieving big time about the lack of time left with him. Thinking about how I’ve probably had 98% of the time I’m going to have with him etc. Pathetic, but I’m crying myself to sleep at nights. Now my Grandmother has died (last night) and I’m wondering why she had 95 years when she’s been wishing she was dead for the past 15 years. Sorry - not very cheerful company am I.
I’ll go and drain the potatoes which will all be mushy now.
I’m glad the 25th looks possible for a few of us - any other takers?
love to all
Jacquie xx
So sorry to hear your news and that all of us seem to be sinking into a black hole at present. Just burst into tears in the mobile phone shop as they played the song I want at my funeral - difficult to explain to a young assistant with 11 yr old son with me.
Really upset can’t make 25th - weekly taxol is such a tie.
Any of you on live chat tonight? Will see how it goes as twins start secondary school tomorrow and might still be organising them - should do it themselves I know but want to be useful.
Let’s hope some of us get good news soon.
Love Kate
Hello all - so sorry to hear your news Cathy. I haven’t had taxol (yet) but the avastin/taxotere combination reduced my liver tumour by half so hope it does it for you.
Jacquie - I hope your news is good too. I know the feeling when you get all these sinister niggling pains but I try to tell myself that I had worrying pains before the last scan and it was all fine - so hope the same is true for you.
It sounds as though we all need a good dose of sunshine!
I’d love to come on the 25th but at the moment I think I’m travelling. I’ll see if I can rearrange if the date works for everyone else
Kay - on the insurance thing, which company are you with? If it’s BUPA I’ve just seen one of their adverts stating that they cover cancer at every stage, no matter how long it takes to treat - see below. I’m not putting this in as a BUPA ad but just in case you are with them and want ammunition for an argument. I’m printing a copy for myself - just in case they decide i’m getting too expensive!
love to all
Barbara
Access to drugs and treatments that aren‘t always widely available - your health is our priority, not the cost of breakthrough drugs, treatments and technologies
The most extensive cancer cover available from any insurer - we provide funding for cancer treatment at every stage, no matter how long it takes to treat or if there’s a family history of cancer
All-
thanks for your replies - I really appreciate them …as I do feel in a bit of a black hole to say the least. What can I say - understand everything you all wrote here. Kate , sorry you burst into tears at the shop…it must have been a bit of a shocker for the assistant at that age its difficult for them to imagine what might be wrong - he probably thought you were upset at the price of the handset…(no kidding)
jacquie - I know exactly where you are coming from. I didn’t need cancer to tell me how precious my life with my family is,even though we have had so much crap to deal with. Plenty of people seem to live to a ripe old age in a complete fog with no understanding of how everything can be taken away. I find them really hard to deal with.
Kay - the insurance company thing is such a mixed blessing, the renewal is coming up at work and i am worried I will be dropped in the middle of treatment- but now I have a date for chemo on September 9th so i will stick to the arangements …are you in the marsden catchment area ? You could ask for a referral there? BTW Did you ask your onc why he chose caceptobane ? I asked my guy today and he said as I responded well to tax he thought a taxane was a better bet…
Barbara - would be lovely to meet you!
trying to keep myself together - think i will take a day off work !
Thanks for the advice about the insurance companies. Unfortunately I am not with BUPA, Barbara, but with Norwich Union. I am not overworried about transferring back into the NHS but don’t particularly want to deal with a new team/location etc. The centre in Guildford has a very good reputation (and it would mean I could stay with the same onc) though I would also consider transferring to the Marsden (which was always what I intended to do at some stage to access more trials etc etc). Just don’t feel I want to be forced into doing that because the insurance co won’t pay up any longer - was holding it in reserve for when things weren’t going so well if that makes any sense. I have these “contingency” plans which help me feel that I can cope with whatever!
I did discuss with the onc “why capecitebine” Cathy. He felt it was the next one to try that worked in a different way to the ones I’ve had before and therefore the cancer might be more sensitive to. I obviously had taxol and avastin last year and although they shrank the tumours, I didn’t respond remarkably well to it. It sounds as if your onc felt you had a good response to taxotere and therefore another taxane makes sense. Hope you had a reasonable day off work today and did something truly indulgent!
My scan is tomorrow afternoon, Jacquie - but I will think of you in the morning! Have developed a cough today (on top of my cold) and am now wondering if I will be able to lie still without coughing!
Sorry to hear about your grandmother, Jacquie, both because she has died but more because her last 15 years were wasted in many ways. My grandmother died some years ago at the age of 98 but by the time she died she didn’t recognise anyone and her quality of life was non existent. SHe would have been better dying 10 years earlier but no-one would have said or thought that at the time because she was loved very much. I did decide when she died that I never wanted to live to be that age if being that age meant no longer being “you” and you couldn’t do any of the things you felt important. But that certainly didn’t mean thinking about dying this early! It is such a complicated thing isn’t it?
Enough whittering…
Hope several of us can get together on the 25th. WOuld be lovely to meet you, Barbara, if you are able to rearrange things - and anyone else feeling like joining us!
What time do you usually get together? I will be landing at Stansted at 11h25 so should be able to be in London at 1 ish. At least I can join you all for the second half.
Got my scan results yesterday - all still stable. Rather nicely the oncs smile was wider than mine!
So very glad to hear your scan results were ok, Barbara - don’t get my results until Thursday. Really hoping it will have shrunk things as the last scan had shown so much progression - fingers crossed.
We usually meet about 11 in Cafe Rouge near St Pauls but tend to stay until certainly 2.30/3. We could always meet a little later with a view to staying a bit later as well - it is good though to get a table before the lunchtime rush. WHat do others think?
Jacquie - hope your scan went ok on Thurs. Do you know when you get your results?
Cathy - hope you are ok and indulging yourself a bit. Think you start the taxol and avastin this next week - is that right? So much for you to get your head around.
Take care everyone - hope you are doing something pleasant on this very wet Saturday (at least very wet here in Surrey).