Hi
What a brilliant idea your hubby had, Tracy. Whether it is the stronger anti-deps or just being away doesn’t really matter, so long as you are feeling better. Hope you are having the same weather as we are - certainly makes me feel better just being able to wear summer clothes and potter in the garden.
Long may it last!
Love to all
Kay xx
Hi all
Not good news from the onc this evening - liver mets show quite a lot of progression and tumour markers are now up in the 400s (were down to 42, highest previously was in the 100s). So I start more chemo on Thursday - xeloda. Needless to say, I’m feeling very down (and quite scared) this evening.
Can’t post any more.
K xx
Oh kay,
bloody hell, i am sorry to hear that, damn, damn damn, at least you know what you will be starting and when. what can i say except i want to send you a cyber hug and to say I am thinking of you, I hate this disease with a passion and all the things that it does to us,
lots of love
Cathy
Kay, My wife was on Xeloda for two years, it kept liver mets under control for all that time.
X
Hi Kay
Have emailed you but just wanted to say that am really really sorry, but don’t ever give up hope and there are lots of ladies on here that are on Xeloda and doing OK/well, so keep focussing on that. Hopefully your liver will respond immediately and things will improve.
Thinking of you and wishing could do/say more for you to help. Just need to get your head around it I suppose and pick yourself up yet again, Effing disease, just so unfair.
Lots of love and cuddles
Dawn
xxxxxxxxxxxxxxxxxxxx
Awwwww Kay ((((((((((huge cyber hugs))))))))))
I think that Dawn has said it all in her post so I would like to echo that! (Even though she’s been polite with ‘effing’)
There are no words that can describe this disease - everything is tooooo mild and none of us deserve the sh1t times that go with it!!!
Enjoy the garden and weather - take it easy
Love from Anne xx
Hi all
Yesterday I was in a very “dark” place but feeling much better today. Knowing that there are many people out there who have done well on xeloda (like your wife, Terry, and I know of several others on this forum) gives me hope that it will be the same for me. Trying very hard today to follow the advice I’ve given to others several times, of not playing the “what if” game but just focusing on the present. And today is a lovely sunny day again …
It is a **???!! disease though - effing is indeed mild, Anne. I put it a lot stronger in my email to Dawn! I really resent the fact that the last few weeks I’ve got back to work my full hours after picking myself up emotionally and recovering physically from the liver resection non-operation in January. I just felt things were improving and I could have a bit of “new normality” for a few months at least - it’s hard not to think of the cancer as having a personality that is particularly vindictive and cruel! And it definitely is not fair - but then who ever said life was or should be?
Going to take the newspaper out into the garden and then might go and do a bit of pottering/pruning. ELdest daughter is back this afternoon as well, so something else to look forward to.
Love to all - enjoy the sunshine.
Kay xx
Hi Kay
Sorry to hear your news, I’m on Xeloda have been for nearly two years, I started off with a higher dosage then onc reduced it as it didn’t agree with me. There is another lady on this site who has been on it for 4 years, on an even lower dosage so think of the positives.
I had my CT scan on Friday (hate waiting for the results) then hubby and I decided to go to Cotswolds for the weekend it was lovely weather, now back home and didn’t find the kitchen in a mess so feeling even better.
Hope you were able to enjoy your daughters visit.
Thinking of you and sending a big hug.
Love Beli x
Hello K - what a bummer! I’m glad you are now in a slightly better place - but I agree with you this disease is spiteful. Just when you get to feel “normal” again it comes and hits you.
When will you start xeloda?
Thinking of you - Geraldine
Hi All
kay - I hope you are doing OK. Thinking of you over the weekend, I am sure that i will be starting Xeloda myself in the next few months, it is so clearly the next step. Others have done well on this and you should be same. keeping my fingers crossed that you get dosage right without a lot of messing about.
everyone else! Hope you had good weekends with family etc in the sun. I have had relatives visiting from the states which has some challenges. They are studying me to see if I am deteriorating in front of them which ifind a bit challenging. Think I am disappointing them at the moment , but could be lovely new pink nails and good makeup.
love to all
cathy
Hi Cathy (and everyone else)
I am getting used to my new situation though still quite scared at times. Had a long chat with my sister last night (she was away this last weekend) which really helped. Think I will feel even better when I start on the xeloda on Thursday and know that there is something hopefully stopping the cancer.
Your comment about your relatives made me laugh - as the news has spread about me at work, I can see people studying me to see if I have changed (or deteriorated as you say!). They clearly don’t expect me to be looking “so well” which has been the standard comment to me since I got back from my holiday. Wish this disease didn’t make me feel so isolated though - most people don’t know what to say. Would be much easier really if they didn’t know but couldn’t organise my day in a way that my absence wouldn’t be noticed and commented on.
Hope everyone else is ok and enjoying the sunshine - are you ok, Jacquie? Haven’t seen you post recently.
Love to all
Kay xx
Hello Darling Kay, and everyone,
Sorry I’ve been ‘absent’ but our computer’s been seriously on the blink. Now I’m back in touch with the world…
What utterly crap news. I don’t want to believe it. I don’t know how you’re getting your head round it but I’m glad you had a good chat with your sister.
I’m glad they’re getting you started on Xeloda tomorrow - no more waiting. How often will you have it?
You darling girl - I so wish I could do something. I suppose this is how people feel when they say that to me…
Sending you a giant hug and hoping everyone’s wonderful to you tomorrow to ease you through the day.
Lots of love
Jacquie
Hi All
Kay just wanted to wish you the best of luck tomorrow and hope the xeloda goes well for you with no adverse side effects. Fingers crossed you respond really well too and can get back to some “normality” again. You know where I am if wanna chat. Keep on smiling that lovely smile and you will get through it.
Hope that everyone else is OK and catch up soon.
Love
Dawn
xx
Hello Kay
Sorry not been posting for a while, but I still keep peeping in. I am sorry to hear your news, especially after your op was a no no and I really hope you have success with Xeloda, you really deserve some good luck. It’s about time this bar steward of a disease was sent to hell.
Thinking of you with lots of love, all the best.
Love, Jen xx
good luck with xeloda too kay , have been thinking about you alot . wish we all could meet more . xx
you guys are sweethearts xxxx
Hi all
Thank you all for your lovely comments - feel so brilliantly supported which makes everthing much easier to deal with.
Taken my first lot of xeloda - perhaps not surprisingly no side effects yet (and hopefully will be none!) Onc has given me a supply of imodium, mouth wash and anti-sickness tablets but has said to use only if I feel it’s necessary. Started me on a reduced dose of xeloda of 1800mg twice a day - I take it for 14 days, Jacquie, and then have a week off. So not back at the hospital (touch wood) for 3 weeks. Feeling much better having started on the chemo and knowing that hopefully something is now stopping the tumours growing further. Think in a way, Jen, it’s been more of a shock than the failed op - that always had a feel of being a long shot.
Anyway hope all you lovely ladies are doing ok. I really wish we could meet more as well, Tracy. Are you back home now? And how are you feeling?
Must go ring my daughter and my mother to let them know I’m fine.
Lots of love to all
Kay xx
Hello Kay,
Just wanted to send you a cyber hug and wish you well.
Angee xxx
Hi All
Kay am glad that today went OK for you and you are not suffering any side effects as of yet. Hopefully you won’t and it will be OK. I think we do feel better once treatment has started as we know that we are fighting back, so heres to xeloda killing all them b******s for you.
Take care and lots of love
Dawn
xx
Hello All
Well my news … saw onc yesterday and told me to ignore what the optician said last week and that if specialist had thought there was a prob would have looked further. Then asked about tumour markers, and EVERYONE talks about them cept me, and he chatted alittle about them but said that breast cancer did not give reliable liver tumour readings as they are mets from the bc and he does not think that they are reliable and so does not use them. So I am really non the wiser there then am i …
Anyway then got onto scans and obviously need another echo for my herceptin, which I knew and he told me not to worry about my last echo and all was good and OK, Then said I need another ct scan to see what has happened since my scan in December and how I have reacted to my herceptin. Asked how I wanted results - ummmmmmm - thought that bit strange, and said really could not do over phone and he said if they called me for appointment to see him I would panic so have agreed to have them in writing.
And for the dilemma - I popped out today with the muppets and got home about 4.40. Eventually got around to checking phone at about 6pm and there was a message from hospital saying that they had an appointment available at 2pm TOMORROW …oh my god, I am so not ready to go then but do I just get it over and done with or delay for another day. Yeah I know, just go and get it over and done with. I am absolutely s******g myself about it, so worried that news will be bad and how would I cope if it were. Know I should look on the “positive” side as such and not get myself all worked up before I should.
Ah well, what will be will be.
Hope all you lovely ladies are doing ok. Tracey hope you feeling better and Beli thanks for your message and support the other day.
Lots of love
Dawn
xx
Hey Dawn
Wow everyone is on line now and this thread has crossed 600 posts…
Well in one sense its good that they offered you the scan right away, you don’t have to wait for the call now, but god I know exactly what you mean…its difficult we are all on this treadmill, Hope the whole process of the scan gos OK tomorrow and that you get the results quickly - and obviously that they are good. Glad that onc put your mind at rest on the eyes.
Kay - glad you are getting on ok with the xeloda now and work is being "good "with you…we are luck in one sense being covered by the DDA, its quite a humane thing really, otherwise for me it would be such a worry . I am finding it ok at work but getting very tired at the moment…i hope it is because my parents have been visiting and it has knackered me physically and emotionally…but they are going home now and i will catch up on my rest.
Hope everyone is doing ok.
love
cathy