Nina and Gail - I was prescribed 50mg three times a day by my oncologist as soon as I mentioned sore heels.
Sykeski - Goodness, you do seem to be an expert at this. Do you think I have a fungal infection? One big toenail and one thumb nail seem to be lifting off and feel bruised but I am not sure if this is a SE left from the Erubicin that I was on previously.
Ann - GP was reluctant to give me anything without approval from onc so will ask my chemo unit about it tomorrow.
Sykeski - that’s some load of research there. Not having problems with my eyesight thankfully. Did at first but was due to be needing varifocals now. Also have new multifocal contact lenses which are great.
Chemo unit phoned today as neuts are a bit low at 1.45 and need to be 1.5 for chemo. So have to go in early to get blood tests redone. Charging up the kindle to keep me occupied for the long wait. Expect they’ll be OK as almost there but it’s the first cycle I’ve had a problem on. Feel OK so don’t think there’s any infection brewing.
gail - I don’t see my GP. I just tell my onc if I have a problem. Hope your blood is ok for the next cycle. I know what you mean about the wait. 
Can anyone here help? got no response from Cap ladies on bone mets thread, lots of people deserted the site due to all the mess it seems!
I am on my 14th cycle of Capecitabine (I have bone mets) and am starting to lose my nails again. I lost all my finger and toenails in 2009 when I went thru chemo and had Taxotere and Capecitabine as part of a trial. It made life very difficult. Oncologist just shrugs it off, says dose reduction would not help and only option would be to stop chemo. Presumably, my nails won’t grow back this time if I continue with Capecitabine so has anyone else experienced this? Are there any specialist nail places who would be able to fit gel nails or something? Got plenty of help when the hair went AWOL last time but no help at all with the nails. I had to soak them in iodine, tape them down to stop them catching,wear latex gloves when cooking, washing, going to loo etc and cotton gloves in between. Thanks in advance. Best wishes to everyone x
Happyfeet - Sorry I can’t be of much help. I’m not having problems with my nails. The only dodgy bit is the last few millimetres at the top which grew when I was on Tax. Ann_04 mentioned a problem with here nails on the previous page and I think I might have come across someone else but that might have been on the US site.
Ann - I asked about B6 but they were reluctant to prescribe it until my hands get worse. Seems a bit bizarre as would think it might help stop them getting worse. My neuts just made it to 1.51 so OK for 6th cycle of chemo.
Thanks for replying Gail5. Seems I am in a minority with losing my nails. Its agony
Happy feet, I haven’t lost my nails, but the skin on my hands and feet has peeled off quite badly. So much so, that they have withheld the Capacitabine now, for two weeks. They will review me again next week and if my hands have healed sufficiently, I will restart on a lower dose. Other than that, I haven’t really had any other side effects.
However, it must be working, because my scan shows that I’m a stable Mabel…whatever happened to that thread? It was on the old site, but seems to have disappeared, unless it’s buried underneath all the posts, which are now repeated over and over again. Can’t stand this new site. it’s too cumbersome. Anyway, that’s all. Hope you’re are all well.
Isobel
Thanks for responding. Have sent you a pm
A mixture of comments cos altho I read daily I don’t have eth energy always to post.
Vit B6 - I’ve just bought some in Superdrug - it was 2 60s for £4.99, so will keep me going for a while. I asked the chemo nurse and was basically told yes you can take it but we don’t give it out - domperidone, loperamide, uddereley fine, but not B6. I’ve decided to take it as a preventative.
Mouth washes - a bit older question this. when I had FECT I was given corsadyl. When I started Cap and they mentioned the mouth problems SE, they said they found eth alcohol irritated so were advocating saline washes as first line treatment, altho I will if need be use Dentyl which is alcohol free.
Me - now down from 2500 twice to 1950 twice after cycle 1. Not too many SEs, slight digestive but copeable, but the tiredness really caught me out in week 2. I finished the cycle with a couple of hour afternoon nap which I couldn’t get up from, and when I mentioned to onc she immediately said reduce dose - the tiredness is cumulative and will get worse, so lets get it down now and catch it in the bud.
Now have bone scan scheduled mid Novemeber end cycle 3 to see if this poisoning is doing anything positive - hope so!!
Nina
Isobel - There is a stable mabel thread under the inspiring news and stories section. Is that the one you’re referring to? Hope you heal quickly and the reduced dose helps.
Nina - I was also given corsadyl on FEC-T, although they were getting a bit reluctant to give me it towards the end, but I felt it was keeping me free of mouth ulcers. I think they must have had some sort of review of what they were giving out while I was on that one as they also reduced the recommended dose of Domperidone as well. Probably cost-cutting. That’s a pretty high dose they started you on. I can manage to stay awake when I get tired in the afternoon, but just because I worry I won’t sleep at night. I do find it hard to get up in the morning though and sometimes only manage because I need to get up to take meds.
Thanks Gail - I’ve found it and will post on it to keep it ‘alive’.
Broomsticklady - I was given Sodium Bicarbonate for mouth washes at the start of my treatment. I developed mouth ulcers during my second cycle, but I hadn’t been using the mouthwash. So, on my third cycle, I started using it as a preventative measure halfway through and my mouth was much better. I still developed one small ulcer, but it healed very quickly.
Happyfeet - I’ve replied!
Hi Ladies,
I haven’t posted for a while - sorry to hear that some of you are struggling on Cap. I struggled for quite some time and ask to have two dose reduction which is always difficult. Cap now is very bearable and although I make sure my feet are well moisturised.
HF - I can’t believe your oncologist has said that a reduction wouldn’t make a difference. I had to have cap reduced after the second cycle as I couldn’t walk it was that bad. It was like walking on hot coals and I would have rather stop completely than put up with that. The change was unbelievable. I went from 2,150 twice a day til 1650 x2. I still had some problems with my feet and asked my oncologist to reduce to 1500 x2. I still have a few minor problems but nothing like it was and the last scan I had show the disease was stable so its still working which is what we all want to achieve. My beds of Toes are still tender and I’ve lost my small toe nail.
Some of my other se is watery eyes but my optician said you can get contact lenses to help they are no way as bad when I was on tax but very irratating as there’s no warning it just starts running. But my nose is the worse it starts and stop all day and I have a hanky with me at all times. I’ve ask is there anything I can do to alleviate the se but they said its a se ad something I’ll have to put up with. Has anyone else had an luck with a suggestion to improve/control this? I would be gratefully if you have.
Gail - really don’t understand why your oncologist won’t give you B6 surely prevention is better than cure? I had pinky hands and my chemo nurse asked the oncologist no problem. I hope you get it sorted out seems very strange. But there no uniform treatment all the chemo units seem to give their patients different cream.meds while other done. I’m sure that depends on what area you live in. My unit does give out any creams but meds seem to be fine.
When my feet were flaky I asked my Reiki lady if there was anything I could do about them as I’d tried all sort of different creams. She suggested hypericum/candula from Helios. I moisturise in the morning and use this cream before I go to bed. My feet really do seem better although the main reason I think was the reduction but the chemo still causes se to my feet. I thought that is well worth a try.
Skeski - thank - you for your post it was really interesting reading.
Tae care
Love
Chris xxx
Sky
Hi ladies
I’m on cycle 7 after a 2-week break. I was sleeping/dozing for most of the day. Onc reduced dose from 2500 x 2 to 2000 x 2 and although I’ve only been on this dose for one week, I already feel better. Side effects aren’t so bad either. Got no diarrhea so far, whilst on cycle 6 I was on the loo up to 9 times a day and throughout the night. The tablets they gave me didn’t help because I just had stomach cramps with them. Time will tell how this reduced dose goes …
I asked Registrar about a scan and he said they wouldn’t even consider it for some time to come. However, I’ll argue this point when I next go, as I was in Eribulin for a short time and now Cap, and I haven’t been scanned for a year so I want to know if all of this is working.
As it’s in my bones and liver, I have problems walking and I just want to say that I finally admitted it and bought a mobility scooter. It’s the best thing I’ve ever bought. When I finally gave in and ordered one (£319 from Lloyds Pharmacy, takes apart and fits in the car) I must admit that I felt like it probably feels when you stand up at the first AA meeting, except I more or less said I’m GrannyScouse and I’m disabled hehehe. We’ve managed a few short breaks to the coast and the places we’ve been to are certainly disabled-friendly, as are most people when they see me on the scooter. It’s been fantastic taking the grandchildren to various parks and I can now get around with them, instead of finding the nearest bench and plonking myself on it with my book while they went off enjoying themselves.
Good luck to us all xx
Happy feet - I have problems with one thumb nail, one big toenail and a smaller one. They seems to be bruised underneath and lifting. I have just finished the 3rd cycle and they don’t seem to be getting any worse but time will tell. How dreadful that you lost all of yours. I can’t believe that a dose reduction wouldn’t help. Perhaps it won’t be as bad this time as you are only on one drug. Have you tried finger cots? They are like condoms but for the fingers!
Gail - It is strange how they won’t give you B6. My onc volunteered it as soon as I said my heels hurt. They are ok now, so it may be worth buying your own B6. I was also given E45.
Steris - I get a runny nose but it is not all the time, a couple of times a day for an hour or two. I almost feel as if I have a cold coming. I have had runny eyes but also dry eyes and they seem to be becoming very light sensitive, as Skeski mentioned. I also seem to get some diarrhoea during my tablet-free week.
Nelson also make a Healing Cream containing calendula, which is very good.
Has anyone else had blood clots up the nose?
Glad you’re enjoying your new-found freedom, Granny Scouse!
Yes Ann_04, I’ve had blood clots up my hooter! Only on one side though…strange. I’ve also had extreme sun sensitivity, which caused an itchy rash and has taken ages to fade. I wasn’t warned about this.
Grannyscouse, I get scanned after the end of every third cycle. I’m surprised you’ve gone so long without one at all. Just shows how different all the approaches are to treatment. Who’s right? What’s more to the point…who’s wrong?
Isobel
This thread is so useful!!I’m on dose 11 of cycle 2, at reduced rate of 1950. Struggled with tiredness in cycle 1, hence reduction, but otherwsie - touch wood - reasonably OK. Still struggling with tiredness but last night nose started streaming and it’s carrying on now. Thought I’d my husband’s man flu he had last week but now I’m wondering!! Maybe I’m moaning at him unfairly!
Just posted on bone mets thread - they are all I have even if plenty of them - my lower spine up to mid thoracic completely infested plus hips, thigh, sternum … Due for my cycle 3 bone scan - that seems to be my order of the day too - and panicing ‘what next’ is Cap isn’t holding me. Gail - I know you’re skin mets, and Isobel, I know you’re boney too - what are the other ladies? My nagging thoughts are down to an onc telling me (a while before hormones failed me and I got Cap) that chemo wasn’t particularly effective for bones.
Nina
broomsticklady, you’re onc’s right. My onc also told me that chemo wasn’t effective on bone mets. Are you on a bisphosphinate(?) such as Ibandronic Acid (Bondronat) for them? I also have bone mets in the hips, spine, ribs, sternum, plus liver mets (touch wood, doesn’t seem to be a problem for me), plus such a runny nose that during the Olympics Granddad said I should enter my nose as it’s running so fast!!! Runny eyes that sting also. Fatigue is the main se though 
Good luck to us all xx
Chris - it wasn’t my onc who refused the B6, it was the doctor on the chemo unit but she was maybe looking at the cost of it. You’re probably right that the reduction in dose has helped you. I too get a runny nose, sorry haven’t found anything to help with it. My eyes are OK but maybe it’s because I already wear contact lenses during the day (although switch to glasses at night).
Ann - I’ve emailed my SBCN to check with her about B6 as I’m prepared to pay for it. I just don’t want to use it unless onc says it’s OK. I get a bit of blood but only on one side too. Not sure if it’s related to low blood counts as I used to get this on previous chemo too and usually kicked in around the time my WBC was meant to be at it’s lowest.
GrannyScouse - It does seem odd you haven’t had a scan for so long. Sounds like you’re getting good use out of the scooter.
Nina - Good luck with the bone scan.
Isobel - it does seem to be a matter of your onc’s judgment with scans.
Nina - I didn’t know that chemo wasn’t much help for bone mets. How depressing! I have bone mets and some in the liver, plus some in nodes. I am on Pamidronate.
Some ladies with bone mets alone are on chemo, so what is the point if it doesn’t help?
Ann - your liver and nodes will be benefiting so don’t lose faith!!
I know some peo with just bones are on Cap - and I suspect then no hormones - but it’s just I’m thinking forward (mistake!) and if the Cap doesn’t work then onto next chemo, and if it has side effects and isn’t going to do much good, shoudl I just continue with bone pills til it spreads elsewhere? It will be a question for the onc next month, but I’m just trying to find out how others fair so I’m slightly forewarned - my oncs can be a bit bombastic if you argue with them - or what they see as argue.
Nina