hi well here i am in floods of tears again . went for marker results , first ones since starting xeloda alone , and they have risen from 30 to203 . well all the blood drained from my face and i wanted to run there and then…
obviously the wonderfull xeloda does not work for me then . he has ordered a scan , had bloods etc etc , and added megace to the mix for now to see what the scans say ,i have had enough this shit goes on and bloody on .
why does mine grow when we stop the hard stuff ?
ayway going to take a trip later on the ferry to uk , {man overboard }xxxxxxx
Hi Tracy
What rubbish news. If its any consolation wonderful xeloda didn’t work for me either…I had 6 cycles with vinorilbine which reduced the tumours in my supra nodes/chest wall and then carried on for 3 cycles more of xeloda…and tumours grew again.
Hope scans etc maybe don’t show as bad as markers suggest.
very best wishes
Jane
Hi Tracy
Stupid blooming markers!
So sorry to hear your news and hope as Jane says that maybe the scans won’t show that much progress. As has been clear from some of the posts (particularly Dawn’s recent ones) there are many oncs who don’t “believe” in tumour markers as a good indicator at all. Do you have long to wait for the scan?
So you go onto Megace as I come off it and go onto xeloda. Hopefully our swap will benefit both of us.
Lots of love
Kay xx
oh Tracy
Damn Damn and damn again, I am sorry to hear that, I was so hoping that it would work for you.
What can I say except send you a cyber hug now.
love
cathy
Hi Tracy
So sorry to hear your news, but as Kay pointed out, my onc says that secondary breast cancer does not give reliable tumour markers and therefore never uses them as does not believe in them. I have no idea what is right or wrong here, as the oncologists all seem to differ in their views/methods/treatments etc. But I have to live with the knowledge that I will never be told my tumour markers so no idea how high/low they are,
Hopefully your scans will show nothing untoward as such and your treatment can be changed accordingly.
Please dont jump overboard (LOL) - we wanna meet up with you again one day soon.
We can wait for results together as I am waiting for my scan from Friday,
Take care and lots of love
Dawn
x
I have noticed that tumour markers often seem to be used to monitor boney mets. I think that as soft tissue mets are monitored regularly by scanning, there is less reason to use markers. I did ask my onc about markers and he said he would do them if I wanted, but I don’t - scans are enough trauma to deal with without adding to the mix.
Hope your scan shows nothing awry.
Jenny
x
…And hope you get good results too, Dawn.
Jenny
x
Hey Tracy,
I hate this cra*py disease! I am so sorry to hear you are so upset - I hope you’re feeling a bit calmer now, a few hours later.
I can’t comment on the tumour markers either as my Onc doesn’t find them v helpful and never tells me what mine are or how often he’s checking them. Wish I could be there and give you a big hug. Just when you were starting to feel a bit better after feeling so low, too…
Giant hug
love Jacquie x
For the first time my onc has sent a letter re tumour markers.I dont really know why as he hasnt mentioned them before and I have 3monthly blood tests.The letter says he is happy to tell me my tumour marker is entirely normal then it says:
CA 15.3 0-30 19
Then it says that a normal result does not mean that there is no malignancy!It also says that tumour markers are not diagnostic and are used to measure response to treatment or progress of disease.I dont understand it,I finished chemo a year ago so why do them now?I dont know whether to be relieved or worried.Any ideas?
Tracy you must be so anxious I hope your scans are reassuring,my love and cyber hugs from horacexx
Hi Tracey
My onc never mentions tumour markers either. So maybe the scan will be fine - I hope it’s good news and will be thinking about you. Let us know how you get one.
Diane
Hi - when I went for my Herceptin yesterday I mentioned tumour markers to the sister on the ward and she says they don’t use them as they don’t really tell you anything. But I think for my peace of mind I would like to know what mine are !
May ask my GP to test them.
I rang and asked for an appointment with my breast nurse as I have not seen her since July last year. I have had mastectomy with reconstruction, chemo, rads and on Herceptin. I will enquire with her. I also need to know what happens next. I have only seen my surgeon once since mastectomy and that was 2 weeks after surgery.
Liz xx
Hi Tracey
I am so sorry you are so upset those damn tumour markers, my experience the registrars do tell me mine WHEN they have been done, I am suppose to have them done every three weeks but sometimes they do not appear to have the results but the regs are never fazed as long as I am feeling ok and that seems to be the main indicator.
Did you goes anywhere nice on the ferry, you did mention about the hosp in Leicester any news?
Im off the hospital tomorrow, I had a scan done on 9 May so will probably get my results tomorrow, I get very stressed especially when they say good results I get all excited then they say same as last time nothing has changed, but to them thats good but for me I want the damn tumours to have shrunk some more.
Sending you lots of love and hugs I hope you are feeling slightly better today.
Beli x
Hi All
I think the thing is that they dont neccessarily tell you anything - so if they are normal thats great- but its not a guarantee. If they start going up, they are probably going to go into it and have a look on a scan etc, my doctor does them, but he discourages me from asking each time I go. Also they dont work for everyone, a sizeable proportion (just as a guess 30%, the CA markers are completely meaningless),
tracy - how are you doing??
love
cathy
Sorry to hear your news. I’ve been told tumour markers are unreliable so they never use them where I’m treated. Sometimes it feels best not to know any more news than the scans and how I am feeling.
Wonder what effects differeent chemos have on markers as well as it effects other blood results?
Did you really go anywhere on a ferry? I seem to lack a sense of humour which is not intentional but sometimes I jsu don’t get the jokes - sad bunny I am.
Hope you don’t have to wait too long for scans and results. I’m headburying and want mine delayed as long as possible!!!
So sorry - it’ s all bad news or feels like bad news - lets hope the markers were wrong and you have got improvement or stabilising at least.
Lots of love to you all
kate
Hi all
Hope you are doing a bit better today Tracy - the shock is always so hard to deal with. Let us know how you are doing.
Did you get your scan results today, Beli? Were they ok? Or (dare I say it) hopefully even good?
Lots of hugs all round
Kay xx
Hi Kay
Hope you are feeling ok. I got my scan results today stable so thats good don’t feel as down as I have sometimes, and I know I should feel happy things haven’t got worse. The nurse has been brilliant at the hosp and has given me lots of creams to try so will let you know which ones I think are good, just in case you have problems with hands and feet (hopefully you won’t).
Tracey hope you are feeling better please get in touch
Sending lots of love and hugs to everyone.
Beli x
Hi Beli,
just to say great news you are stable. I know what you mean it never feels that good, but of course it IS good news. Well done girl!
love Jacquie
ps how are you now Tracy?
Beli,
Really pleased to see your news, ts good but of course I know what you mean about the whole business, glad to hear this.
love
cathy
Hi Beli
Really pleased that you are still “stable” - it’s not the “best” news but it is still “good”! Would love to hear which creams etc - are they over the counter ones or prescription only? Good that they aren’t so worried that they are reducing the dose - obviously feel it’s recoverable.
So far, so good for me - no side effects but only just 1 week in! Was very very tired last night but had had a long day at work with a workshop in the afternoon at which I had to present. But all went well and Thurs is my day off, so I can “slob” about today a bit!
Tracy - really hope you are ok and have a date for (or indeed have had) your scan.
Love and hugs to all
Kay xx
hi well just got back went on ferry and took our van to the new forest , was a nice break but was still worried the whole time really apart from shopping time and visiting some family . my scan is on tuesday which is very fast so they must be worried . spoke to my nurse and asked about mondays markers and they have risen again so something is moving bloody fast and it terrifies me .
not sure how to deal with all this again seems the cancer starts up as soon as the strong stuff stops , ie , andrioymicin and taxotere which does nt ghive me long i keep thinking .
marilyn if you are reading i saw yu are on a hormone and xeloda is this right?
did they do this for a reason? they have put me on megace for now alongside xeloda they said sometimes this may work .
kay how are yu doing? and dawn have yu had results yet? all this is pure shit and one awful way to live eh …,
be back later
love to all Tracy xxx