kay , what treatment are they thinking about putting you on after your last taxotere ? i am on xeloda and feeling very nervous as have got markers on thursday after 2 full rounds of the xeloda, i really hope it works on its own .
sorry meant katherine !!
HI Tracy
Talking to you almost in “real time”!! I had taxol rather than taxotere (but they are both similar) which finished in December. At the moment they only have me on Megace which is a hormonal treatment. His plan is to keep me on this for as long as the cancer isn’t progressing and then probably put me on xeloda - said he thought it would work for between 6 and 18 months.
Think some other people have had really good results though with xeloda and it has held things well for quite a long time. It’s always worrying though when you are having blood tests/scans etc - hopefully it will show that the markers are not going up. What was your last marker level? Seem to remember it had come down quite low but may be thinking of someone else’s marker results!!! Are they going to scan you again at some point?
I can probably be in London before 11 but wouldn’t be able to make it for 9 - fighting with the commuters on the train from Guildford at that time which I don’t think I could cope with as you can rarely get a seat. We’ll see what time others can make think it was Allie who said 11. Not sure who else is definitely going to be there - there were the 5 of us the first time (Cathy, me, Dawn, Jacquie and Allie) and think we are all there, plus you but I think some others have also expressed an interest, which would be good.
Anyway, take care - I must go “do” something. Spend far too much time at the moment on here and on ebay!
Love Kay x
hi kay , my last marker was 30 stayed that way twice despite another tax . must admit i feel very very anxious at the moment , there has been alot of bad news on the other forum i visit and i have been in tears the last couple of days and in total shock . i then see about jane on here . it gets so sad and i find myself crying for these ladies and their famlies .
my husband told me yesterday to give myself a break from one of the boards as it is making me worse and then i keep thinking of my own mortality .
dont worry kay about the times , i can occupy myself for a few hours in london , its a big trip for me living on an island !!
love to all , Tracy xx
Hi Tracy
It is so hard isn’t it, when you hear of others not doing well - really adds to our own anxiety. However I find it does also help me keep a grip on “reality” really - I can only hope that I will be one of those that does well for a long time. But that hope is grounded in the reality of knowing that some don’t do well and that I must count myself as incredibly lucky when things aren’t getting worse for me.
We’ll see what the others feel about times. I certainly don’t mind meeting a bit earlier than 11.
Hope everyone else has had a good weekend despite the weather. I must go and check on the roast …
Kay x
Hi Tracy, Kay
Hope you have had a good weekend.
I have had a quiet weekend and felt terrible day 7 and day 8 of taxotere, feeling quite alot better today. After the chemo and the zometa my bone mets really flare up and I have to take alot of pain killers…can’t remember but Tracy do you have bone mets and have you experienced this? I think this is what is happening as today is much much better and this has been pretty much the pattern from previous times. Anyway find out soon as I have a scan coming up.
I am pretty flexible on times - earlier is probably slighly better than later, and really wouldn’t encourage anyone to do battle with the comuters. Went to the supermarket yesterday briefly and nearly turned and ran out as heaving with screaming children, irate shoppers and long queues…certainly chemo means you aren’t up for a good london style fight with tons of people.
Tracy and Kay I know what you mean about other people…its difficult. I cry for other people as well but its also a rather pointed reality check for us. all we can do is make the most of the time we have…carrying on and also organising things the way I want to for my family.
Anyway enough blathering on - OH is making dinner and playing me his latest album (and he is same age as me!)
everyone take care,
love
Cathy
Hi
Thought i would bring the liver thread up.
Went to see onc today, booked next scan and found out little bit of god news - my markers are at 28 !! Have been restraining myself from asking as wasnt sure I wanted to hear the answer.
Hope everyone is OK.
love
cathy
ohhhh yippee katherine , really happy for you , 28 thats great , lower than me at 30 .
answering your question yes i have bone mets too , i did get pain with the first pamidromite but not now and the bones are stable . i am scared to get markers done on thursday as finished the taxotere now and on the xeloda alone as you know .
when is your scan katherine?
well i really must go eat some chocolate !!
love Tracy xxxx
Hi all
That’s really really good news, Cathy - you must be pleased, particularly when obviously the last few taxotere have been taking it out of you. When’s your scan?
I’ve been back at work this week - 3-4 hours each day. Found it very tiring but have loved being back with the children. Just need to pace myself! It’s been really difficult though seeing some of the adults. I seem to be going through the same story over and over again and often people don’t understand what it all means - very exhausting emotionally as I seem to end up supporting them and putting on this jolly face! Will get easier though as people get used to me being around again - and it is good that they care!
So having worked this morning, am about to go for a snooze!
Hope everyone else is doing ok - looking forward to our meet in April.
Kay x
A much underestimated therapeutic device - the siesta!!! I too have discovered the value of a snooze in the afternoon.
Good day today - they took my port out as they think the hormonals are wrking well and I am not likely to need it for a while. YAY! I did check with the surgeon that they can put on e back if/when required tjough. Still, it gives you a bit of a lift.
The dressing they put on it is superglue - looks really strange but means I can shower (with caution). A new one on me!
Cathy - hope the taxotere continues to go well. How far down the road are you? I found the first 6 sessions OK (apart from a couple of days when the steroids) wore off. The last two were poo. However its now three months ago and I’m feeling fine, eyebrows back, bags of energy (well relatively). For most people it really does get better very quickly after the treatment ends. The one hangover is the brillopad hair - but I’m counting the days till I can dye it.
all the best to all
Barbara
Hi Girls,
I can hardly keep up with all your news - not getting much time on the computer lately.
Kay, good to hear you survived work, but appreciate what you say about having to tell your story over and over again. It’s wearing isn’t it? And i usually try to be brutally honest about the prognosis, to forestall those ‘I’m sure it’ll all be allright, think positive’ style comments. I feel a bit mean, but people need to understand the reality of this.
Barbara, I finished chemo in November and have some nice regrowth too. I’m nearly ready to come out from under the wig, and have dyed away the grey in readiness, but find i’m getting very tetchy as people keep asking how much hair I’ve got and when I’ll stop wearing it. I feel under pressure, and it feels very private to me still. I guess it’s part of that whole thing where people want it to be over so I’m ‘back to normal’. It’s not that simple. Has anyone else felt this possessive about their hair?!
Glad to hear we’re on target for our meet and Tracy has her ticket.Who else is coming who wasn’t mentioned in Kay’s message above?
Can’t join in the tumour markers conversation as I’ve never been told anything about mine. Not sure i want to ask either.
Dawn, going to see Chicago? sounds fantastic. I’ve got the DVD and I’m having a night with some girl friends to watch it together next week.
Take care all of you
lots of love jacquie x
By the way Tracy, you mentioned sad news about Jane. I’ve looked around but can’t find what you’re referring to. Do you mean Jane RA? What’s happened?
Jx
Hello All
Barbara - i had 6 sessions of taxotere and thats it for me, oncologist thought two more for me would have no real incremental benefit, really I am relived, about a month ago I thought I would go in and demand 8, but last one was really awful…now its whats next, on April 2nd I have scan, and then I guess I will go onto hormonals, but everyones treatment is differenet and everyones onc is different,
Jacquie - oh god I know what you mean anout think positive etc, I havent told anyone at work except HR about prognosis and immediate boss…its a very full on city type environment and I just don’t want them to know, but sometimes it might be easier, people generally take their cue from me, but occasionaly awkward- babrbara has given me good formula!!
tracy thanks for the reply on bone mets- I have put on 5 pounds from chocolate, its 5 pounds well spent- but would like to get my fitness up.
kay - take it easy at work, I know from experience its easy to get mission creep, one moment youare just there for a couple of hours and then the whole day has gone and you come back frayed.
Dawn hope you are oK - give us an update of yu have a moment
really there should be a course/ rough guide on how to live with secondaries that involves all the themes that we have in common - loss of privacy, employment, dealing with other peoples needs, etc etc- anyone out there ar BCC listening? We can share our ideas here and thats great - but for people who dont find these forums?
take care
love
Cathy
jacksy , sorry it was on breast cancer met ladies ,jane on there . i get confused as i visit 4 sites .sorry for the confusion .xx
Hi Tracy
I had a great run on Xelodia 10 months that seemed like a lifetime and it necer stopped working onc took me off due to shrinkage, last May reallt easy chemo for me.
Ive had to come off the Breast Cancer org us just latelt its nothing but bad news put me on a real downer of late (shep girl was the last straw.
she kept me going when i was first diagnosed it was always such an upbeat site.
Anyway some good news went to see onc today start Gemzar/ Cisplatin Tuesday first time ive been on a cocktail off two, onc says that he hopes it will knock things back for a lot longer than the Xelodia i asked him if i could return to Herceptin even though id had progression he said you may not need to a new drug is due out shortly and its hoorayyyyy Tykerb its due to be passed in June by NICE and hopefully the NHS will fund it shortly after and believe me my onc would not say this if he didnt mean it and he said my names on it.
Love Tracey 2424 x
oh Sorry im must do the spell check im in a rush only wanted to write a quick comment on Xelodia and started rambling…
Tracey 2424
No there’s no sad news about me! I was once on the tube and a woman lent forward and said…is that Jane A…I heard you were dead. I then realised she was an ex student I’d taught 15 years ago…she’d heard I’d died on the old College grapevine…
Sorry to intrude on the thread…
Jane
Hi Jane
Glad to see you here !!
Cathy
Hi All
Sorry been a bit elusive. Had another great weekend for my birthday, but reckon two weekends of having lots of fun have finally caught up with me. As am completely shattered and now have another cold, and reckon might be starting chest infection not sure. So feeling pretty pants, and alas, i don’t get any time to rest and recover with the two muppets.
Last weekend was a blast, as my friends had organised a surprise huma limo to take us up London and boy, did we have a scream in there I can say. Drank 3 bottles of bucks fizz and 1 bottle of champers (between 9, so not too bad). Got to hotel and rooms not ready so hit the pub over the road, and didn’t “fall” out of there till 4pm., I drank more than I probably should and more than is probably good for me but too late now. We found a nice Italian in Leicester Square and had a lovely meal and then onto Chicago. Have to say was disappointed with the show. There is no scenery, and my friends who have seen the film say it is all done in womens jail but the set was non existence. The orchestra took main stage on a tiered staircase thing, there were sort of bar lines on the floor but that was it. And I think due to the drink and partying atmosphere, we needed something more lively with a bit of get up and go, But hey, we had a fabulous time and really enjoyed ourselves. Got to bed about 1am, which is LATE for me, So all in all, my 40th birthday has gone down with a mega bang, lots of partying and fun had by all, and now I need to recover before my big holiday.
I hope that everyone is ok, have been following as best I can, but just not getting time to sit here and type that much and once muppets in bed, am collapsing on the sofa,
Looking forward to 24th seeing everyone sounds like a few more joining us too, so that should be fun. Has anyone booked table as of yet?
Cathy, Jacquie and Kay hope that work is going OK for you all, esp, Kay just starting back. Am sure you must find it tiring at the start again and getting back into routine. Cathy and Jacquie and Allie of course, hope you are not all working too hard, although some days the thought of going to a job outside of home, seems quite a nice idea and reckon probably a little more restful - ha ha - from bering with my two terrors.
Take care everyone else, and sorry not mentioned you all individually.
Lots of Love
Dawn
xx
tracey yes i kniw what you mean , i need to stay away also esp now joanne . i just cant handle it , i end up depressed all day and tearfull thinking of these lovely ladies , its so unfair .
be nice if you could get to london on april the 24th when we meet if funds allow you after your parties , i sure know how much teens cost us , we have 4 but the two older girls (19) live with their partners so got 2 boys 17 and 16 and a 12 yr old girl at home .
ok bbl love Tracy xxx