Hi Scottish lass
I think you may be mixed up with tumour markers. Easy to do as there’re lots of things going on in our heads when facing cancer.
The standard test for breast cancer is CA15-3. The marker you referred to, Ca125 is usually used for testing for ovarian cancer. CEA is cancer eastrogen antigen.
There are things that everyone should be aware of, that can raise tumour markers. The various reasons include being on chemo, or if you have an infection, or if there is an inflammatory response in the body e.g rheumatoid arthritis. However, your onc would be aware of these things. Another example, if you had a “ladies problem” a gynaecologist would not test CA125 of he knew you were on chemo, as there would be no benefit to testing and could give a false positive result. Hope this is of some help.
Don’t get too hung up on markers unless they are way out of range.
I have been on Xeloda since Dec 2010. I know I will stay in it for as long as it keeps working but can anyone tell me what sort of timescale I can expect?
Hi Alimo
ive had 27 cycles of capecitanine so far, that’s nearly 2 years if you include a 2 month break… its always a worry as no one knows how long it will work for as we are all individuals, and there are many types of breast cancer. Hope it goes well for you though.
Jane x
Dear Bellasmum, I am sorry to say that you are incorrect. My Consultant Oncologist has spoken about my unusual raised CEA and Ca125 levels to juniour doctors and explains to them that " Valerie’s cancer tumours unusally show increases in markers CEA and Ca125." Yes I am aware that they are usually used in such things as Ovarian Cancer and bowel canver. BUT my cancer shows that the markers I have given above DO become raised when things are not so good. Though it is quite unusual is it still very useful and can indicate if my chemo is working or not. The cancer secrets a protein ( or whatever) and these become raised when I am not doing so well. I hope you do not mind me pointing this out to you Bellasmum but they have told me about it often enough over the years!( I am not angry just want to make my point!)
I am not having a good day today. I have been for my bone scan. Went in to the hospital early for the injection and returned a few hours later to have the scan. The area for oine scans has moved since my last one and the machinery is also new and the new area is much improved to the old draughty old one in the main building. I removed all metal including bra and slipped on some joggers to avoid zips. This meant I did not have to wear the awful backless thin dressing gown they usually supply. But I saw a woman wearing one and asked the nurseabout it and so when I went home I got ready there which made it easier for me as dressing ans undressing is exhausting for me right now.
I went to visit family on the west coast yesterday and had a lovely afternoon and a lovely meal. But I had an awful evening when I got home and just let’s say I spent a few hours in the loo and was exhausted this morning, feeling totoally washed out and cold and tiired. But I have a few days without appointments now and so not return there until Thursday for my chemo again. I went for a long sleep when I got hime while my lovely OH prepared our evening meal which I thoroughly enjoyed. How I would manage without him I do not know as he has not onlu been my cook and bottlewasher but my cheuffeur too. Gail if you read this I hope you get on ok at Ward one tomorrow. Love to all from Val
Val - sorry I updated the Virilobine thread before I read the above so didn’t realise you’d had such a bad day with the bone scan. Just hope you get good results to make up for it and are having a better day today. Had to repease blood counts but was OK to go yesterday, although pharmacy took over 2 hours once I was cleared to dispense the tablets.
Hi Gail. I read your update on the other site. I have added a post on the bone mets thread if you want to catch up on my bone scan resullts, to save me tyoing it all again. All the best for your new chemo and I hope it does the trick for you. Much love from Val
3 more cycles here I come!! Unofficial ‘stable’ report from yesterday’s bone scan!! I hate waiting - we all do - and Friday’s clinic was along way off, so having checked with nuclear medicine their report would be available that afternoon, I left a message for my old primary BCN to see if she could peek at results for me and she did bles her and rang me to stay ‘stable’. I don’t know if there’s anything else, but stable will do me fine!!
Honestly I know this is no consolation to those struggling with feet and tums etc but I’m flourishing on this chemo!! Just back from hairdresser and she asked what I’d been doing with my hair the last few months, it’s in so much better condition - I’ve been poisoning my body with Cap that’s what -nothing else has changed! And my mental state is so good too!! Now all I have to do is get physically stronger - pain stopped me doing much, and now I’ve got progablin(?) which seems to be helping I have no excuse but to start getting some strength back in my body - but got to go slowly - tho my brain says run, my body says crawl before you toddle then try walking before running!!
Nina
Val - I’m really sorry you’ve had such bad news on the bone scan and just hope the rads will help you out.
Nina - great news on your unofficial report and no need to apologise for doing so well on Cap. I think there is often a tendency to think it’s not working if you do feel well, so it’s nice that the opposite has been true for you.
Edit: Sorry, I have found it. I didn’t go back far enough.
Val, I hope the rads sorts out your problem and that your chemo is effective. I find it interesting that you are able to have Xeloda for some time and then have a long spell of stability. I am really hoping for that. At present, it seems a choice between not feeling very good whilst on chemo or stopping treatment and having progression. Not a great choice.
Jane - Having been on this chemo for so long, have you had a dose reduction or changed your regime? I can’t imagine putting up with the side effects getting cumulatively worse for that period of time. I have just finished C8.
Eye Update! I started off with watery sensitive eyes. For those artificial tears from chemist are fine. For the sticky yukky eyes I’ve now got you need prescription Hypromellose drops. why can’t life be straightforward?!
Nina
Thanks for tha info Nina - my eyes seem to have settled down a bit but every now and then they just stream without any warning as does my nose especually when I’m cooking. I usally have to plug to so I don’t drip all over the place!!
It’s my third week off the peachy pills as what started off as a UTI has now turned into a chesty infection. The second lot of AB’s didn’t agree with me so had to stop after 3 days and GP now has zray results and advised more AB’s to get rid of the infecion. The report looks like its affected the pleural effsuion I’ve previously had and apparently there is more fluid in my lungs which has been caused by the infection I hope.
Or it dos beg the question as to whether the Capectibine has stopped working I’m hoping not but awaiting a call from my Oncologist to see if she can put my mind at rest.
Hope all you ither ladies are still doing wel and the se aren’t too bad. I’m still having foot/hands probably so am assuming its still there racing around my body doing some good.
Hi have just finished 1st dose of capecitabine which I am taking with lapatinib. I have had iintermitant indigestion, stomach cramps and diarrhrea extreme tiredness, sore lips all livable with, my problem is my fingers particularly the ends. They are swollen have wicklows and I can’t stand the pain. I take oromorph to ease it. I see onc on Friday hopefully she will reduce dose. But then I wonder is it the combination of the two drugs making it worse. Is anyone else on this combo. x
CAn’t help on the laptnib side but can a bit otherwise. It seems all oncs load you with highest dose initially to see if you can cope. Some do, some don’t = they can reduce teh initial dose by up to 50% so have a lot of leeway!! Which doesn’t make you feel any better now, but push for a dose reduction if not offered. Sore lips - zovirax / aclivosor (sp?) will help them cure. The tiredness will go with dose reduction - that was my only side effect on first cycle and my 25% reduction made all the difference. I’m ‘only’ on cycle 7 now so there are some here a lot more experienced but I now have no side effects except sticky eyes.
Please don’t give up - Cap does seem doable for so many and there is so much room for dose reduction. Hang on in there please.
Hi broomsticklady ( love your name) I’m really pleased for you that you’re on dose 7 with very little se hope I’m so lucky. I will ask for reduction. I’ve queried your reply on motorbility prob being thick but hope you can help x
Ianii - I don’t have experience of lapatinib, but as Nina says, most oncs start you off on the hightest dose and it’s fairly common to need a reduction as it’s a bit trial and error till they get a dose you can cope with.
Hi everyone,I’m a capcetabine girl,have picked up so much info from your posts,am now wondering if anyone can advise me on coping wilst on a holiday in Egypt,I don’t intend sitting in full sun and I have factor 50 sun lotion,but am concerned because my consultant said I would go ‘grey’ not brown if I exsposed myself to the sun, any suggestion welcome .
Xeloda, had a slight effect for the first scan but not after the second scan. Next is weekly Taxol.
Have any of you ladies had weekly Taxol? I start next week and am wondering what side effects I am likely to get. Had Epirubicin first, which nearely crippled me, my muscles hurt so much. It didn’t work.
Did Taxol work for you?
Ann x
Just replied to you in bcpals!! I don’t - Cap - touch wood - is still ‘doing’ me, but Val (Scottishlass) is the latest weekly Taxol victim - I’m sure she’ll be along soon!! Think she’s coping OK ish but having long standing blood problems continue - IE non TAXOL related.
I’m hoping not but awaiting a call from my Oncologist to see if she can put my mind at rest.