I am currently on my 3rd cycle of Xeloda and have just been told the results from the 2nd cycle tumour markers. After the first cycle there was no change but this time they have shot up. I am really worried and upsetas I had great hopes of this chemo. I am off on holiday in a couple of days so I am to see my oncologist on my return and in the meantime he will arrange a CT scan to see what is going on.
I wonder if I should be on a higher dose, I am currently on 1500mg twice a day, and it seems that a lot of you are on a higher dose. I also have very few side effects.
I also wonder if I should now push for a referral to say the Marsden, I am being treated privately , I know there is no magic wand but where I am does feel very isolated
Any advice appreciated
Kathryn
Hi Kathryn
sorry it looks like it hasnt worked for you. I was on 2300 twice a day but I think it is done on weight I am 13 stone mind you before all these chemos I was 11. There are lots more chemos they can put you on its hard for us to say we are all different and dont know where your bc has spread to. I f you are a private patient they should be giving the best anyway shouldnt they? Go off your gut feeling ask them lots of questions if you think of something make a note of it .I am a real pain I make notes and date everything after 4 yrs of secondary treatment its so easy to forget little things that could make a big difference.
Hope you have a lovely holiday.
Love Debsxxx
Kathryn my onc will test for markers but they are unreliable - he would rather scan. My marker were high 40 post firts rouns of treatment (although I had full clearance and limited node involvement). On my sec. dx they had risen to 140 last week they were about 115 having plateaued through chemo. My onc thinks I just don’t give off the proteins needed to measure markers. (and the opposite can happen).
Geraldine
Thanks for that,
Debs the spread is quite widespread, I have had a pleural effusion drained from my left lung and there is a nodule there, I have a small tumour on my liver, 7mm I think and some early disease in my vertebrae, I suspect that it is the lung that is causing the problem.
when I have talked to the Mc Millan nurse at our local cancer centre she thinks I am better off in the private sector as I have access to more drug options, totally wrong, I know especially for thode of you battling co payments. I had read that the Marsden will review your tretment so it may be an option to discuss with him.
Gerry my markers were up to about 400 and have now gone up to 570.
Anyway, thanks, it’s great to hear from others in this unenviable situation!
I think that’s my point Kathryn my onc. expected my marker to be 400+. I have secs in the lung, lymph and bones. Yours might be high but nothing too worry about - mine was relatively low with a lot to worry about.
G
My tumour markers are 33 as of 2 weeks ago…not sure what they are now…33 didnb’t seem too bad but with my DX how the hell can that be???
Capacetabine obviuosly has not worked for me either but dont give up ask for something else…ask…
good luck love P xxxxxx
Paula
33 is just the top of the normal range. as you say how the hell can that be? Can you ask your onc what they are now ?
Katie - i dont know if one is better off in the private sector (I am) it depends on your policy and your onc, if your onc wont give you newer drugs etc one might be better off joining Marsden trials, or if you have great policy you might have better in private, I think that these things can’t be generalised. and I really dont know whch is true!
X
Cathy
Hi Kathryn
Really sorry to hear that your results aren’t good. As you know I have had very good results on xeloda but we are all different.
As Debs says I think the dosage is weight (and height) related. I started on 1800mg, went up to 2000mg after the 1st cycle but now after the 3rd have reduced to 1500mg because of the side effects. My onc has said that the lower dose shouldn’t allow the tumours to become more active but will just lessen the rate of decrease. So not sure increasing the dose will necessarily help.
However he also says that (although they seem to be a good indicator of how things are going with me) tumour markers are not always a good indicator. I believe sometimes the chemo itself can cause the markers to rise even if it is being effective. So do try not to worry too much and wait and see what the scan shows.
I too am seen privately and have thought that I may request a 2nd opinion/transfer to the Marsden at some stage. Think (rightly or wrongly) the private option gives us access to some drugs such as Avastin that are much harder to access on the NHS. However I don’t think you can access all of the trial drugs - so the time for me will probably be when I feel I am running out of options privately.
Hope you are off somewhere really lovely for your 2 days - we too are away this weekend in Hertfordshire.
Paula - 33 makes absolutely no sense whatsoever to me even given that tumour markers aren’t entirely reliable. As Cathy says, that is the top end of normal. Think it would be a good idea to find out what they are now - know there is a bit of a time lag though in getting the results back.
Love to all
Kay x
Thanks everyone, I am really amazed at the variation in our markers, Paula, I have been following your other thread and am so sorry about your recent diagnosis, my oncologist has always been clear that there are many other treatments so I do hope that the Marsden come up with some options for you, I think the worst bit is the not knowing, once you get some treatment going it is somehow easier to deal with.
Cathy , my policy is very good, and we have discussed Avastin etc, can I ask where you are being treated? The hospital where I usually see my oncologist and get treatment is quite small and one of the chemo nurses (there are only 2 ) is leaving so I feel a bit bereft. Although I am not on IV chemo at the minute they do my bloods through my port which is a Godsend so I am having panics about what will happen when the other one is on holiday/sick etc!
Anyway I now have plenty to think about so thanks
Best Wishes Kathryn
Hi Kay
I’m really pleased it’s working for someone!! I am only 5 foot and about 9 stone, though should be less! I am going cycling with husband and my 2 teenagers in Provence not exactly relaxing but no doubt will take my mind off things!! it’s one of the holidays where the company transport your luggage and the accomodation is nice small hotels with yummy food so looking forward to it!
Whereabouts in Hertfordshire? We are in Potters Bar!
Am off tomorrow to have the next lot of bloods done so will see what that shows
Thanks to all Kathryn
Hi Kathryn, I’ve just started my 5th cycle of Xeloda…started on a low dose, 1500mgs and markers were rising by 3 each cycle…have now had 2 cycles on 2300mgs and markers are stable at 41.
I’ve been told the tablets can be slow to kick in. Hope the next markers show Xeloda’s working for you…Belinda…x
Thanks Belinda
It’s so encouraging to hear how it pans out for different people . Really pleased to hear that all is going well for you
Best Wishes Kathryn
My onc has never discussed anything about markers with me, can someone explain is it from your blood they get them?
Diane
Hi Diane
my onc wont do markers he says they can give false hope and stress as well so I have no idea.
Hope you are well.xx
Have a good holiday Kathrynxx
Love Debsxxx
Hi all
I start on Xeloda in a couple of weeks. What is markers and how does it effect your treatment???
Confused reader!!
Kirsty
Hi all
Hope you get some better news today, Kathryn. We are off to a village near Ware - using up some Tesco vouchers for a cheap weekend away! Hoping to get to Hatfield House if my feet are ok. Enjoy your cycling - sounds really energetic. Certainly good that you are feeling able to do it - hope you come back feeling less stressed.
Oncs seem to differ hugely over tumour markers, Kirsty and Diane. Some don’t use them at all, others use them as a guide but with caution I think. The idea is that they show how active the cancer is. However they can be raised for other reasons and indeed can go up because of the chemo itself. Small changes mean very little but a trend up or down my onc believes is an indicator of what is happening. And for me they do certainly seem to be a good indicator of what is happening. And it is a blood test - they just test mine routinely each 3 weeks when I am at the hospital to pick up the xeloda, along with the blood counts etc. Don’t get the results though until the next time I am back. Hope that makes it clearer.
Have a good weekend everyone
Kay x
Thanks everyone, been shopping all day with friend and our teenage daughters for holidays. Also saw chemo nurse who did another blood test. I am so surprised at the different approachs taken to tumour markers, my oncologist always wants a scan done about every 3 months anyway but with the markers, I have always found that mine are indicitive of something going on.
Hope everyone has a good weekend
Kathryn
Have never worried about markers - they are not an exact science. I started on 2500mgs and had agonising neuropathy in the hands and mouth, so have been dropped to 1800mg. The neuropathy this time has been bearable and is going off much more quickly. I really want this to work! This cycle has been confused by needing to take antibiotics for eye inflammation, which had their own side effect.
In the recent triple negative Ask the Expert Conference there was a bit of information about research showing xeloda doesn’t work particularly well in triple negative bc. This was certainly the case for me. I had it for 6 cycles combined with vinorilbine and tumours in chest wall/lymphs shrank, but then did 3 cycles alone and they grew (so my personal logical deduction is that it was the vinorilbine doing the job.) Wonder if anyone who is er- pr- or trip neg has also found this?
Katie: I’m getting a private referral to Marsden (guy I am seeing on holiday though till mid August)…just want to review options and talk to someone else…discuss avastin and maybe PARP inhibitor trials. I feel just owe it to myself to have one of the most experienced opinions in UK though certainly not expecting wonders.
Tumour markers: my current onc doesn’t do them often; last one did but always normal in my case which is a fat lot of information.
Jane
Hi Katie P
Hope you had a good time in provence sounds lovely and something to do rather than waiting, I have been on Xeloda for two years my tumour markers have steadily been coming down, I am on 1500mg twice a day before as the others ladies have said it is done on weight and height but I was unwell at the very beginning and couldn’t tolerate the higher dosage. I am in Hatfield so if you ever want to meet up that would be great ( don’t know how to private message).
Diane yes they get the results from blood tests.
Kay Hope you had a lovely weekend and got the chance to go to Hatfield House its lovely.
Love to all hope you all have good weekends and make the most of the lovely weather.
Beli x