I was just wondering what on average was the length of time before this drug starts working. I am about to start my 5th cycle and as of the last blood test my tumour marker count was still rising. In combination with Lapatinib (and necessary Piriton) the regime is leaving me feeling incredibly tired all the time. Is this normal? Does it get better with time?
I have been feeling very low lately, trying to figure out why. Can only come up with thoughts that I am dealing with bad side effects for a drug that I am not sure is doing much at the moment. What is the longest anyone has been on Capecitabine before an improvement is noticed with either tumour markers or ct scans?
Looking forward to a girlie weekend with my daughter as Hubby and son are off camping for a Beaver and Dad weekend. Looks like they are going to have fantastic weather!
I would like to know this too snoogle… I have just finished my first cycle and while no tummy probs have very sore tingly hands, am worried i wont be able to type soon! Or that i won’t be well enough for second cycle… or long enough to see any results!
I have ordered some udderly cream, can anyone recommend anything else, like supplements, herbal remedies, dietry advice to reduce the side effects? Or some good gloves i can wear for household stuff? I can’t even open my pill packets anymore, hubby has to. I am on a lot of steroids as well for another condition which im sure don’t help…
I saw my gp this morning for my zoladex implant. I showed her my toes, the left big toe nail is separated over half way down and oozing. She has prescribed an antibiotic cream. I lost my big toe nails when I was on previous chemo, but not this dramatically!
Told my gp that I was feeling emotionally fragile. It may have been my perception and possibly a wrong one, but I felt she was a little disappointed as she kept saying how strong and positive I had been over the last year. She was as kind as ever, so maybe I am just being too hard on myself.
I have only been on Cap/Lab for a week, but I can’t believe how tired I feel, I am wandering about in a haze which is not like me. Did your tiredness start immediately or after you had been taking Cap/Lab for a while? I have also had diahreoa but other than that ok (although i’m well aware it’s very early days yet). I am only on 1650 twice a day.
Hi Dawn, Just read your post about the scan. I know the feeling as I mentioned to you that I’d had very little shrinkage as well. It’s very disappointing but when I spoke to the nurse last week she said that often happens and at least we are responding to the treatment. She said it quite often doesn’t work until the end, so I’m hanging on to that thought. Another lady there had been told (by the same onc) that it’s not working at all, so when she asked him was it worth continuing he said ‘Oh yes, definitely’ Anyway, stable is good, at least the little monsters aren’t spreading.
Hi Snoogle and Lesley, again I know how you feel, it’s so depressing to be told it’s not having the effect you hoped for. It does make you wonder whether it’s worth it. However, I’m over that now and back to being ‘upbeat’ again. I hope that you had a great weekend and that you are feeling better in yourselves.
I had a really good weekend for my birthday. Went out with my false lashes on and dressed like a teenager and I couldn’t have cared less. Felt like me again. Had my 11 week of Tax yesterday, so just waiting for the indigestion to kick in (usually about 3.00 this afternoon) - What joy…
Anyway, hope you all have a pleasant and pain free day. Take care of yourselves. Lotsa love to you all. Dianne x x x
Just wondered, are you having taxol in combination with capecitabine? Is that as pills, weekly? Are the side effects too awful?
I’m just wondering what my options are if the capecitabine doesn’t work on it’s own. Still can’t remember what drug the onc. was talking about last week. Defo have chemo brain!
Hi Everyone, Scaryfox, I’m just on taxotere at the moment, but he says if this doesn’t work as well as he hopes by the end it’ll be the Capecitabine. Lucky me! Still, I don’t care, I’ll take anything they throw at me to keep on living. I feel fine today, staved of the chronic indigestion with copious amounts of Gaviscon which I’m now getting free on prescription and also bicarb of soda in water.
Hayz, they wouldn’t take my tooth out before the chemo as they said it would stop my mouth healing up, so check on that before you have it done.
Hope everyone else is feeling well today, take care of yourselves, talk soon. Lotsa love, Dianne x x x
I was at the Dental Hospital on Monday having X-Rays & it showed quite a lot of damage to the tooth & also a possible pocket of infection.
My Dentist thinks that extracting the tooth may cure the problems I’m having & my Oncologist is keen to find out if it does.
I have been numb down most of the left hand side of my face for around 7 weeks & have shooting pains across my mouth…it’s really starting to get me down & my Oncologist thinks the best thing is to get it sorted now 'cause I’ll be on Xeloda until it stops working…which I’m hoping is years & years away!
I am worried about how it will heal tho…suppose I’ll just have to wait & see & hope that the antibiotics sort out any infections quickly!
Dunno if you’re into complementary stuff, but I took arnica (homeopathic pills from Boots) before and after having all 4 wisdom teeth out a few years back, someone said it would help reduce bruising.
Dentist had warned me to take a week off work cos it was a big op, but I had no swelling, minimal pain (just took a few paracetemols and healed really quickly). Went back to work after 2 days - silly me!
Sure the antibiotics will work for the infection bit too, good luck!
Hi Ladies, Hope you are all well today. Hayz, I guess as long as your oncologist says it’s ok to sort the tooth out then it will be fine. I think Scaryfox’s idea of the arnica is a good one too, I know that it’s supposed to have great healing properties, so I’m sure that will be beneficial. Good luck with it anyway, let us know how you get on. Not much doing today, went out yesterday and did a bit of shopping but today I’m a bit tired, so going to take it easy. Have a good day everyone, bye for now, lotsa love, Diannexxx
Hi all. Well last night was spent on hospital. First hospitalisation in 14 months since diagnosis so can’t complain really. Had severe head pains and high temperature. MRI head scan revealed nothing nasty. Started improving today so avoided having a lumber puncture. In the end put down to a viral infection. Sent home with a supply of tramadol solpadol and movical.
Hi Snoogle, Just seen your message and wanted to say that I hope you are feeling a thousand times better today and I’m so sorry to hear that you were so poorly.
I’ve been up half the night, couldn’t sleep, but otherwise fine. Hope you all have a good weekend and that the weather is kind to us. Take good care of yourselves everybody. Lotsa love, Dianne x x x
im about to start my 16th cycle of 3600mg a day. prob my last for now as the onc wants try hormone tabs again and give my body a break altho its not been too bad, as am still workin (dropped to 3 days a week tho) and my feet are goooood, hands too - had couple o bad days whn couldn really walk but seem to subside quite quickly this time. (I say 16th cyclebut not at 3600mg -as after christmas(prior to christmas was on 4000mg daily) i was reduced to 3000mg a day for 2 months? as my feet got so raw and sore and just couldn walk at all, then as the 12wk scan only showed stable the onc upped the dose again to 3600mg as on 3000mg my feet had healed - excpt my big toes.)
im takin pyrodoxine 3 times a day (well whn i remember)and also boots aqueaus cream morning and night for my feet n hands - for me its the best moisturising cream ive found and i also get it free on prescription - bonus.
Big toes - well i too sufferd for 2-3 months early this yr with oozin big toes - so went to my chiropodist (hospitl have one in diabetic centre but long waitin list) the chiropodist said the only way was to cut my toe nails down to release the infection, as what happens is altho the doc kept givin me antibiotics, the infection would heal under nail, then the debris had nowhere to go, so the infection started again in the warm envirnnment behind the nail again and again, obvious when u think about it! anywya he cut my big toe nails down it did not hurt at all! and altho they dont look that great theyr ok, and have not had any infection since.
Hi Zippy, I have just read your post and am amazed at the 3600mg a day you are taking (I am on 2000 a day) and find I have had a few feet, sore big toes and tiredness problems but you still being able to go to work on such a high dosage has made me feel that it is all possible. My tumours were all stable albeit no shrinkage at last scan 6 weeks ago so if at my next scan its the same I shall now feel able to discuss a higher dose. I too am using the aqueaus cream and like you take pyrodoxine when I remember but after how sore my feet have been lately I have really made an effort to remember and I do now feel that it is making a difference. The other problem I have had is swollen feet and now legs which my Onc says its nothing to do with the Capcitabine but having read the leaflet that comes with the tablets it does mention swollen legs. I am now on my 9th cycle so am a way behind you but my Onc says I will stay on this for as long as it works.
Lesley xx
Hello everyone. I’m on my 6th cycle of capecitabine and have just started experiencing an extremely itchy and dry scalp. Little red spots and flaking skin on scalp and little spots around forehead and hairline. Has anyone else experienced this? The itching is driving me mad. Maybe I should be patient because after this cycle I’m taking a break so presumably the symptoms will clear. However I would appreciate any tips on alleviating the symptoms.
Think I just had number 11 of xeloda yesterday, and apart from a split on both heels, am doing ok. I am on 4000mg a day, 2000mg in morning nd 2000mg at night. So far so good, last sccn was stable and got another one in 3 months. I am hoping starts to shrink things soon, but stable is good.
I have no advice on the scalp problem tawny, but hope it settles down for you soon.
Hope everyone else is faring well on the xeloda and gives you good results.
Hi everyone. Thanks Dawn, I did do some online research and found that rashes can be a side effect. I’m now wondering why I am taking a break from Capecitabine when others of you are continuing your cycles. Can anyone shed any light, it’s a while until I see my Onc.
