Oh and I forgot,
Debs - thanks - I am hopeful, I think my liver is in the moldy cheese category as well,hope it can bounce back a bit like it did before.
X
C
Glad to hear that the taxol/avastin went ok, Cathy - hope there are no major side effects. Also glad to hear that you haven’t had to wait for your MRI, Jacquie, even if you don’t know when you will get the results. Perhaps that will be clarified when you go for the actual scan.
You really do sound to have had it tough, Maroke. And I think I would get very cross with an onc who wondered whether it was worth trying a treatment that had a 15% chance of success. You could be in that group that it works well with - we all know from these forums that one treatment might not work at all for one person but works really well for another, and vice versa. Just (!!)a matter of finding what your cancer is sensitive too - lets hope that it is indeed Navelbine for you. But there are other chemos after that that could be tried and hopefully might work - my onc tells me that he still has quite a few options and you are only one “ahead” of me! I have had FEC, then Taxol and Avastin and now xeloda. I find out tomorrow how xeloda is working for me when I get the results of my scan.
Quite like the idea of a "moldy cheese"category of liver (your onc must be less serious than mine - he doesn’t understand my sense of humour at all!) even though it is also quite scary. I am also in that category I think with multiple tumours and clusters of tumours (all last year they thought a cluster of tumours was my one solitary tumour - quite a shock to discover I had lots of tumours and have never dared ask how many). Am really hoping that this scan will show that we are just back to that one particular cluster showing and the others are once again too small to show up on a scan - fingers crossed.
Would be so good to see you again Beli if you can make the 25th. And hope you get your scans organised soon.
Love to everyone
Kay x
Well my scan results exceeded all my dreams (and my onc’s) - none of the tumours now show up on the scan! Quite amazing given the state of my liver in May. So he’s keeping me on xeloda but reducing the dose slightly again (my feet and hands have been quite bad again and my legs have been swelling up too). So am over the moon really - and celebrating with some bubbly!
Hope everyone else is ok.
Kay x
oh my god Kay - thats incredible -
I am so happy for you! It gives me some hope too that xeloda will work for me one day as well.
love
Cathy
Wow Kay that is absolutely FANTASTIC AMAZING news. You must be well pleased and I hope u are celebrating big time with a few bottles of champers (well glasses anyway).
Maybe once herceptin stops working for me (lets hope that years away) Xeloda will do the same for me.
Oooohhhh am soooo pleased for u. Best news in ages.
Speak soon
Love
Dawn
xx
SUCH good news Kay - really pleased for you!
Barbara
Kay
How brilliant!!!
So pleased for you.
Laura X
I have got to change from Epi to Taxotere or Docetaxel, because the tumours in my Liver are not shrinking.
any news?
gill
Kay -
Such fab news - enjoy!
Jennyx
kay , i am so pleased for you , you must be over the moon . well done xx
Kay, so glad to read your good news.
gill
Hi Kay…really pleased to read your good xeloda news.
Jane
Kay - thaat’s wonderful news. Hope it carries on working for you. You read of women wjho take xeloda for years - mind you the hand/feet thing is awful
Enjoy your good news
Kate
Hi Kay,
I am so happy for you!!! My onc had told me that if the Xeloda took it could work for years. I do hope that will be so in your case!!! Hope I will be able to give you all some good news about Navelbine. I keep feeling twinges inmyliver,don’t know if that is good or bad. Oh Kay I am really thrilled to bits.
love Maroke
Whoop! Whoop! Whoop!
Kay - that is absolutely bloody fantastic news!!! 
Sooooooooooooooooooo pleased for you
Love Anne xx
Kay What fantastic news I bet you are on cloud nine, really amazing I’m so pleased for you.
Cathy I was on taxotere back in 2002 when first dx, they seem to think that isn’t an option now, not that the Xeloda isn’t working I just want to know in my head when the time comes that I know there is something else available. I’m having my bone scan on Monday as they had a cancellation and now awaiting for the appt for the ct.
Hope you are all enjoying the sun, you maybe have forgotten what it looks like its that very bright thing in the sky.
Enjoy Beli x
Really pleased to hear your news Kay!
Am just celebrating my two years of being stable on Xeloda and long may it continue!!!
C
x
Many many thanks to you all for your good wishes - it’s great to share some good news with everyone! Think it is still sinking in in many ways!
Hopefully it has also given some encouragement to some of you (particularly those of you starting on a new treatment when the previous one has failed - and there seem to be quite a few at the moment). For those of you who don’t know (or remember) my story, this last year has been very difficult. I was given a dx of a solitary liver tumour last May/June and told that it should be operable and therefore I might be able to “cheat fate” (the surgeon’s words). However discovered it was too close to the portal vein in the liver and therefore had to have chemo first (taxol & avastin). That shrank the tumour moderately but not particularly away from the vein but they did decide they would operate in January. But when they opened me up, discovered the liver was riddled with cancer (not how they described it to me - they talked about multiple small tumours scattered throughout the liver with several bigger clusters of tumours and indeed what they had thought was a solitary tumour on scan, turned out to be a cluster of tumours). So opened me up, removed my gall bladder cos I had a large gallstone and then stapled me up again.
Wasn’t completely disheartened by that as had had avastin and despite mixed reports of it, all the evidence pointed to it giving people a longer period without progression. So in many ways the real shock came in April/May when a scan showed that all the small tumours had grown hugely (never dared ask how much they’d grown or how many “multiple” is - always felt they might tell me there were too many to count!). Liver function was affected and I felt that if Avastin (a “super” drug) hadn’t worked, the chances of something else working and controlling things for any length of time were not great. Onc was also talking for the first time about “hoping” that we might be able to get it back under control and sounded far less certain than he usually does. But clearly we were totally wrong.
As I said, I really hope that my story will give some of you with failing treatments some hope that the next treatment (whatever it is) might be the one your cancer is really sensitive to. Have always tried to ground my hopes in reality - but my reality is that xeloda has led to me being NED which was something Avastin couldn’t do. And hope is in a way what enables us to keep going and certainly makes it easier to enjoy life. I certainly have more hope now that when xeloda fails for me, there may well be something else that holds it for some time.
Sorry - whittering away! Think it is part of me trying to readjust to the fact I might have a bit more of a future than I thought.
Love to all - hope you are enjoying the sunshine! - and thank you again for all your good wishes.
Kay xx
Oh Kay, that’s utterly brilliant news - I am just so happy for you. It’s almost unbelievable, such an improvement in such a relatively short time. You must be soooo pleased. Like you say - you have to readjust the vague notion you had in your head before, to a new vague notion about what the future holds! Makes all those hand and feet problems absolutely worthwhile!!
Hope you enjoyed the champers. had a few glasses myself this weekend as I was staying at a spa hotel for a girlfriend’s 40th.10 of us. It was so relaxing and such fun - really cheered me up.
Love to everyone
Jacquie xx
hello all
Kay - thanks for the detailed post - in many ways i am in the same stuation that you were in April - May time, things just went quite wild after what period of seeming stability. I had never dared to ask just how many tumors or what size they were but my onc included a copy of the scan with the blood test results when I asked for it - and it didn’t make pretty reading. Although the nurse from hospice did say that they were all still smallish (but I think she was just trying to cheer me up) I think its really shocking how quickly things get crazy in the liver, but as you say and as Debs says things can come back under controk and that gives me hope,
What I am finding most depressing about this is the weekly taol- thats pretty much all I managed to squeak out - weekly argggh. I know you and Jacquie have been through it - but its such a bind, I feel like I will be living at the hospital. You know exactly what I mean so I won’t go on about it,
jacquie- glad you had a nice time at the spa, that sounds alot of fun, I really love things like that myself…facials are the ultimate luxury when done well…although once I went with a friend to a spa and everyone was smoking - right down tot he swimmers in the pool…it was so ridiculous we had a great time laughing about it,
Beli - sorry to hear your daughter has broken up with her boyrfriend, three years is a long enough time to invest a lot energy and emotion in a relationship and for whatever reason it broke up she must be very sad. It has got to be good for her that you can comfort her)
Tracy - hope you had a nice sunday - its been very good weather here and we had a lovely day. Have been out most of the day pushing myself on with family although we did manage to fuel up with large lunch.
love to all
cathy