Hi all - wondered if anyone had any thoughts on this - I have secondaries in bones, lymph and liver ( multiple) and have had 8 weekly taxol so far - each week they take liver function tests AST and ALT have fallen a lot but ALK PHOS and GGT are still high ( 196 and 258) so they had planned to re-scan in mid january - however, at the start they took my blood tumour markers which were high 183 and I commented to the chemo nurse if they would re-do it - she said she would and it came back as 305! She said that althought they don’t take much notice of them as its come back higher they have bought the scan forward to this thursday…obviously it looks as if chemo isn’t working but I am a bit confused - any thoughts anyone? Thanks Jayne
there’s been other people on this forum - maybe the weekly taxol one - where the tumour markers are going up but they’ve been told that chemo can cause these to raise so it may not be as bad as you think. I really hope this is the case.
A lot of oncs don’t trust or rely on tumour markers as they can be effected by other things. It’s good that your liver function and other tests are improving so I would think more about that.
It’s horrible having your scan brought forward but I think you would feel even worse if you had to wait for a scan.
Do you do secondary chat? It’s on tonight at 830pm -930pm if you fancy joining us - I’m always late!!!
Try not to worry - it may well be just the chemo actually working that is causing the markers to rise - see if you can find the reply - I’m pretty sure it’s the weekly taxol one. I’m on weekly taxol - having no.14 this week and now my eyelashes are falling out just when I thought the hair loss had stopped.
All the best
Kate
Hi Jayne, I have tumour markers taken every 3 weeks, I’m on a 3 weekly cycle of Xeloda and have bone mets. Since diagnosis I have had at least 4 weekly markers taken and for me the markers have been a very accurate indication of what’s happening. Markers are not reliable for all but I’m glad I have them taken so regularly. Good Luck with your scan and results…x
hello
I just wanted to add to Kates comments that my onc doesn’t do tumour markers either they just test the liver function and as long as they are OK they are not worried. They seem to go alot on how you are feeling in yourself as well.
Caroline
Hi Jayne,
please don’t worry too much. Although my onc never tells me how high or low mine are, she does tell me good, bad or stabilising, but at the same time she tells me that for a lot of people these markers don’t mean anything and they can’t rely on them. The importatnt thing is that your blood results and liver function are good. Keeping my fingers crossed for your scan results,
Maroke
I would look at it this way Jayne - mid january was a bit late - most people are scanned after 9 and by moving it forward you will be scanned after 9, so I think they are bringing you to schedule that you really should have. its horrible waiting for results and having these damn test, I decided to NOT ask about tumor markers this month as I want to have christmas.
also - tumor markers are only a clue, my liver is a mess and my markers have always been quite low, I know other people with less disease who have much higher markers…they are just one input.
CathyX
Hi everyone
thanks for your responses - there seems to be real differences with what oncs look for…and what is a good or not so good sign…but its really helpful to know this - it all gets a bit confusing and the old brain wont stop ticking over all the possibilities - i’m just feeling awful at the moment - aching limbs, headache and sore throat - no energy and I get so frustrated with feeling like this - May be because I had taxol, herceptain and bone stuff all together last friday- maybe its that! Funny - feeling great at the weekend but maybe that was the steroids,anyway, once again gals many thanks for sharing your experiences - so good to have somewhere to go with questions…jaynex
Hi all
Had my scan results - shrinkage in lymphs but no change in liver - they said this was good news - i.e. liver no worse …but I was really hoping for some improvement in liver - still multiple - plan now is to continue with taxol then have a 2-3 month break ( but continue to have herceptain and bone stuff) then they will scan again and see what needs to be done - this is my first “bout” of treatment from diagnosis od secondaries in september - can’t help thinking that if something was going to help liver it would be this first blast…y the way no news on my bones - they said ct scan not really good at looking at bones…just thought i would let you know the results and see if anyone had any thoughts…thank you fo being there - its so good to have a bit of a sounding board - hope you are all having a good day…jayne
Hi Jayne
I’d say it’s good news that the changes have been for the better. I can understand you would have liked to see some shrinkage/lessening in the liver but I guess as they’re no worse then that’s got to be good. Also I expect if they’d been progression in the bones this would have shown to some extent (my CT scans show changes in the bone structure of the affected sites). Hope you are coping as well as possible with taxol and results continue to improve or hold still. Sorry I can’t help you any more than this but maybe one of the ladies who’ve replied so far can. Take care and have a good Christmas (if that’s possible)
Nicky x
ps - are you going down with a cold or something as your description of how you feel sounds like it - even though I know we always assume the worse if there’s more aches anywhere.
Hi Nicky thank you for your reply - had taxol number 10 today - was there from 10 am until 5pm cos the attachment broke and had to have one sent down! LOL - only I didn’t - i nearly cried hanging around all day with a 2and a half journey each way1 !!! anyway i now have a break for xmas - so if chemo is canceeeed for a week I thought i would cancel cancer! for christmas !!! well, i can dream! hope all is well with you , jaynex
Hi Jayne
I know what you mean about being in hospital all day. My last chemo in Sept took for ever - a repeat blood test, then 90 mins of Pamidronate on top of everything. I was the last to leave at 5.30 and did burst into tears when I got back to the car - especially as it was the last one (for a while at least!) I hope your break over Christmas does you good so you can build up some strength and relax a bit. I’m off to my 4 weekly Pamidronate tomorrow and fingers crossed it goes ahead on time, which means I could be out by 11.30 to face the lovely food shopping ;-(
Take care and have a good Christmas
Nicky x
Hi Nicky
Thanks for message - hope all goes to plan tomorrow - the supermarket to follow will not be very relaxing! …the hospital i go to are changing from pamidronate to something else which onlytakes 15 minutes in the new year so i’m hoping that on 2nd jan when i have taxol, herceptain and bone stuff together it will cut down on the time…maybe yours will switch too
anyway …have a lovely xmas…hope its relaxing and enjoyable for you…jayne x
Jayne - is it zaledronic acid (zometa) they are switching you to as that only takes 15 minutes and I think is comsidered a ‘gold star’ treatment fo bony spread.I’ve pnly ever been on that and fel fine now but was definately fluey for a few hours after the first 2 doses but now no problem.
kate
Thanks kate - thats it! I forgot the name - i was a bit fluy the first time with Pamidronate as well - but forwarned is forarmed…hope you have a good christmas…jaynex