hi , well firstly i hope you all had a good meeting today , it must of been great to put faces to names .
well good news on scan , significant improvment in the number and size of liver mets , a segment 4 lesion had reduced in size from 35mm, to 19mm and a segment 5/6 lesion has reduced from 56mm to 40mm, similer changes throughout liver . no skeletal change . ( i wanted a copy of report ) . this is after 4 taxotere and 1 full round of xeloda ( had to stop twice re hand and foot . infection etc ) . i am so glad of this and i dont want to sound ungratefull but i am so hoping to go for this RFA so the lesions need to shrink a little more . has anyone had much shrinkage with another 2 rounds of chemo ? my oncol said you normally get the most shrinkage with the first 3 sometimes . also maybe xeloda will shrink the rest , sorry havant taken a breath (must be the steroids)
last chemo i had andrioymicin they shrank really well the same but came straight back after chemo ended and i was on aromasin .
anyway be back later . love to all
Tracy xx
Hi Tracy,
Just wanted to say that’s brilliant news about your shrinkage - like you say, significant change. Well done! (pat yourself on back). I don’t know about when the chemo is at its most effective, but i do remember my onc saying it still continues to stay in your body and work for some time after you’ve stopped, so still a way to go.
Expect everyone else too tired to come on here tonight as it was a marathon day, but sure they’ll be v pleased when they next look. Yes it was great to meet ‘in the flesh’.
Channel Islands next time…?!
Love Jacquie x
Hi Tracy
Fantastic news - am so pleased for you. And I had as much shrinkage in the last 3 cycles of chemo as I did in the 1st, despite being told like you that it was likely to “plateau”. Have another scan next week so will find out whether it has stayed “shrunken” - fingers crossed! Don’t want anything to jeopardise the liver resection.
Meeting was great though very tiring. I had a long snooze when I got back home! Quite fancy a meet in the Channel Islands!!! Any excuse for a holiday…
Lots of love Kay x
great stuff , hope you can make it here next time , i will be waiting at the airport!! xx
Hi Tracy
Wonderful news for you about the shrinkage - hopefully you can sort out RFA. Must be so pleased that makes it worthwhile going through this s**t.
I have just made my appoint. to see Kay’s geezer, on Friday 1st. Oh my God!!! Am bricking it now - will he, won’t he …
Anyway, had great time yesterday, and was tiring but think that was through the worry and nerves of it all, and trekking up to London (not done that in a couple of years), but was lovely to meet everyone.
Tracy, did you manage to follow the clues to the other site, so we can have your email address? Least can swap pics and see wot you look like!!!
Take care all
Love
Dawn
xx
clues to the other site? no how do i get there ?
dawn are you hoping to do RFA too? sorry if i am ignorant , ahve been bit bit of a mess until yesterday .
went down to see my chemo nurse today to chat about my discs for the marsden and was pleased they are all done and ready to post . wil have to see what the prof thinks when he reads them , i guess he will wantg more shrinkage . i have been reading on internet you have to have 9 lesions or less for RFA. ? WELL also good news my markers are now 32 !! started at 1300 !
be back later ,
love Tracy xx
Markers now 32??? I hope you’ve opened the champagne!! That’s FANTASTIC. Well done, you. Kay xx
PS I’m having a liver resection on the 30th Jan (single met, originally of over 5cm but now down to about 3 after chemo) and Dawn is hoping to go for the same if the surgeon gives her the go ahead - is seeing the same “geezer” as she puts it, as me! Sure she’ll give you more details when she’s next online.
Hi Tracy
Am just on line quickly, as having night watching tv … the other site is not allowed to be mentioned, but here are the clues. It is six letters in total - take the first letter from both words Breast Cancer and then the next four letters are another name for mates and friends, and use to be another name for dog food. Then if you google the word it should come up with the website. Hopefully you can find it and log on and then we can swap emails. Let us know how you get on. Kay managed to find it and Cathy, so hopefully you will too. My id is the same as on here.
Catch up with everyone tomorrow.
Love
Dawn
x
Hi Dawn
I have had an email from Bertie, Head of New Media @ BCC, it is ok to mention the other site in whispers 
Best wishes
RMW
Wow Tracy,
Sure looks like this round of chemo is doing the trick, I am very envious that your tumour markers are 32, keep up the good work!
Allie
Hi everyone I’m new to this site but have been reading your messages to keep me going. I was diagnosed with BC and hot spots (as they called them) on my lungs and spine. Had my last chemo on 11 Dec 07 had ct scan /mammogram/ultra sound scan and now have appointment on Tues 22 to see onc. My question to you ladies is - have any of you waited so long for the next step of treatment - seems a long time to me!
Granny60
thanks for link , have nabbed it and its in my favs now !!!will join later , off for a portugese meal tonight xxxx
r .
Hi Granny 60
I finished my chemo on 21 Nov and was not due to see onc til 19 Dec, but I rang his office and told them I was not happy waiting that long and then had my ct scan organised for 3 Dec and saw him on 5 Dec and then managed to start my herceptin on 20 Dec so only 4 weeks inbetween treatments. Just realised now that it is Tues you will see your onc, so no point trying to get earlier appoint but if happens again would def. do so.
Hope everything goes OK for you though.
Take care
Love
Dawn
x
Hi Granny 60
Don’t know how your onc works but I have had “gaps” in my treatment at times when scans etc have been done and then the onc has discussed with other members of the “team” (surgeons etc) what the next step should be. They definitely have a team approach where I am even if I am dealing with one key person at a time. So hopefully that is what has been happening for you as well and when you see the onc on Tuesday, he will have a clear plan ready to discuss with you based on those scans etc and how well the chemo has worked.
It’s horrible waiting though without the results and a clear idea of what next (it often gets described as limbo land) and I am sure whatever he says on Tuesday, knowing what is happening and what is planned will help you feel more in control. I finished chemo too in early Dec (have a liver resection in 10 days time for my liver met and have had to wait 7 weeks for the op to allow me time to recover a bit from the chemo). I’ve found it frightening at times to think that currently there is nothing actively happening to “control” things. However they did reassure me that the tumour was highly unlikely to grow in that time without active treatment - in fact they would anticipate that it would continue to shrink slightly for some weeks after finishing chemo.
Do let us know how you get on.
Kay
hi , thanks for link again , just havant got around to the bit telling you about myself yet as i had chemo last week (no5 ) and i have been suffering these last few days big time with my legs , hands and feet and generally feeling low ( chemo seems to make me very depressed a few days after ) anyway sleeping is a nightmare as feet ache so much when i get into bed , i toss and turn all night .
spent 2 days this week in pyjamas .
well i am rooting for everyone with scans , mri s this week etc ,
be back later , lots of love Tracy xxxx
RESULTS IN
When I scanned this header, for some reason I read RESULT SIN!!!
Sorry, not meaning to be trite but I made myself smile.
HI just a line to say good luck for friday dawn and your appointment re the RFA . i have to call the marsden tomorrow when they have read my scans to see if my tumours are in the right position etc for the same procedure but i have one chemo to go first so he may need to wait until after that . its so scary waiting to know isant it.
well i hope kay is ok and the op goes well , look forward to hearing from her also when she comes out of hospital .
well bye for now , bbl
love Tracy xx