My fingertips do seem to be improving gradually, now that I am not handling the tablets.
I have develped painful heels and a painful big toenail and thumbnail. Anyone else had this?
Ann x
Hi PinkyLou
It’s not been the best couple of weeks at all. Kim had a one in I don’t know how many reaction to the chemo and went into a real downward spiral. I had the on call docs and her gp out and the mac millan nurse called in and they all thought it was just normal but bad side effects and she’d pick up soon.
On thursday the 20th at about 4 in the morning she was going downhill so badly, despite her pleading with me not too, I rang 999 and she was rushed to Plymouth hospital where she stayed in intensive care for a week. We very very nearly lost her. She’s out and in a ward now but will be in for another 10 days or so.
I don’t want to scare anybody and thought hard before posting this but I think everyone who takes capcitabine should be made very aware that a bit of diarrhea might be normal but if it continous for too long (and I don’t really know how long too long is) , get yourself to the hospital somehow. We’re unlucky being over an hour from a hospital and not being off the loo for more than half an hour at a time makes it a very tough decision.
I think she’s on the mend now, she’s sitting out of bed and had her first liquid meal yesterday and the nutritionist is saying maybe some soup today which will be a bit of a birthday treat. She’s fifty today.
Jon - So sorry Kim has been having such a bad time and glad she’s feeling a bit better now. Hope she can have the soup today and has as good a birthday as can be expected under the circumstances. I was told if I got a really bad reaction in the first few days I might be lacking an enzyme that’s required for Cap to work. Has Kim’s onc mentioned that or does she just need a lower dose? Hope she gets sorted out quickly and can either take a reduced dose or find a new treatment.
Lemongrove - I take Omeprazole late at night and first thing in the morning and it seems to help. Also Domperidone before the breakfast and evening meals. I take the tablets about 8:30 in the morning and 7:30 at night. It took me 3 cycles to find a regime that helped with the acid reflux and initially Omeprazole only helped a bit until I changed the times I was taking it, so might help to adjust your routine a bit.
Ann - My heels have started to get a bit sore on cycle 5 but nails are OK. Good you’re fingers are a bit better.
Jon - my heart goes out to you. We had similar ‘drama’ during my first primary chemo when my Hickman got infected. It gave me septicemia but I didn’t know - just thought it was chemo reaction so refused to let Himself call quack as he wanted. He ended up 999ing, against my groans and moans, and if he hadn’t I wouldn’t be here now - temperature of 104 for 4 days paniced them a bit I think!!
Gail - interesting what you say about timing of Edinburgh sec evening - thats what puts me off coming down from Aberdeen - needs an overnight stay and I can’t afford that!!
Ann - sore heels are an early warning of the sole / foot problems and I was told to contact onc ward ASAP.
LG - sorry you’re struggling - you started about same time as me and I hate to say I’m coping reasonably apart from tiredness. I’ve struggled to get up to a 12 hour day up and awake and the last few days it’s been harder and harder avoiding an afternoon nap. I do make sure I take my Cap on a full stomach - after last mouth full of meal and leave at least 8 hours between does - which with bone pills to cope with and my limited day ain’t easy!! Tho my veins ar eso awful I’d do anything to avoid venous access. I think the 3 cycles initally is standard - I have that then a bone scan and CT scan - 2 assaults on the vein! - before cycle 4.
Val - so pleased to read elsewhere you’re doing so well after hip
Isobel - sorry to Gilles Centre exhausted you - I must admit to be shattered a few days afer but it was good to meet you. As abov, not sure about evenings tho.
All else - if I page back I lose this - just done that once and had to retype - grrr - hope all goes as well as can be hoped.
Nina
Nina - I did tell my onc yesterday and she gave me E45 and B6.
Ann - the favoured foot cream seems to be Udderley Smooth with urea - available on fleabay and Amazon tho worth asking your onc nurse about too - the sales rep in Aberdeen gives it to the ward - they don’t always have it but usually do and it saves you a few pennies. I think th eurea seems to be the key - thats used in chiropody supplied foot stuff.
Nina
Nina - good to hear from you again. I wasn’t too bad after Gilles Centre but at least I live locally.
My fingers are really sore and peeling. So are my feet and I’ve been putting lashings of that udderly stuff with urea on. A couple of my nail beds are extra sore. My hands feel like the skin is all stretched over them. I know this is a known side effect…but I don’ t like it! Any ideas anyone? I’m also nearing the end of my week off (Friday). I would have thought it would have been better by now. So that’s the end of my moan!
Isobel
Isobel- I have always found Nelson’s Healing Cream (Calendula) particularly good for anything sore. I know it wouldn’t be any good for large areas as the tube is not that big and it would cost a fortune but can be helpful for a specific area.
Rubbing the skin with the inside of banana peel is supposed to help but I haven’t tried it yet. Something to do with the enzyme in it.
During which cycle did your SEs get really bad?
Ann
Isobel - I have a bit of soreness on hands but not too bad yet. Chemo unit told me to stop taking the pills and phone them if I suffered too much. You might need a reduction in your dose. I’m trying to soldier on until it gets worse as it’s so far keeping me stable and would like a bit more improvement in skin mets before I have to reduce the dose. I have noticed that the week off is worse as well.
I was told to let the onc unit know as soon as any problems get bad. That way, the tablets may only have to be stopped for a short time. If it is not nipped in the bud, then a longer break would be required.
Ann - that makes sense. I’m at the end of my 2nd week anyway, but will definitely be more inclined to stop the pills if it gets worse.
Ann, I’ve been using Udderly Smooth with Urea as that has been recommended by quite a few people on here. My side effects developed, midway during my third cycle. I have had my week off and they still don’t seem any better. Having said that, I went for my Herceptin today, and was told that I had Grade 2 toxicity (there being 3 grades). So I am to stop the tablets for a week and I will be reassessed next Friday, when I just so happen to have an Oncology appointment. Gail, as you say, I was told that I might need a dose reduction.
Anyway, I hope it improves. I feel like a snake shedding its skin…yuk! So, back to the cream…!
Isobel
Hi Isobel, I had to have a reduction in my Capecitabine years ago when my feet were particulary bad it it felt like walking on broken glass and I was crying with the pain. I didn’t know back than that they coud reduce the dose. Anyway I never looked back after that and my feet and hands are fine now and am back on it again.
I didn’t make the WGH meeting either that night. I made the eveining meal and ended up shattered ans comatose flat on my back. I find the time a bit late for me too especially when on chemo and stamina by that time of day is failing.
I saw the surgeon yesterday re my check up after my hip replacement and he is really pleased that I have got as far as I have already. Which pleased me a lot. Today I dropped the men off for their long walk along the river Tweed and I jsy visited the butcher and spent a fortune but it is all in the fridge and freezer for thse days I do not want to go anywhere near a supermarket. I had a leisurly walk along the town of Peebles and looked in all the lovely shops but resisited buying anything today as nothing took my fancy. I didn’t even buy any cookery books!
When I ordered the Uddrly Smooth cream recently form Amazon I also ordered a similar tub of their FOOT CREAM which is thicker but does not contain Urea. I use both, vary them each time and my feet are as good as they have been in a long long time.
I am still on the Steroids and they are encouraging my appitite and I am really enjoying food again. However they stop next week ( I am taking them on alternative days now) so am concerned my appitite will get bad again as I was losing weight and got down to 9 stone 7lbs which I haven’t been for 30 years! Today my OH’s pal made up sanwiches and he gave me my own goody bag too. He made a sandwich I wouldn’t have thought of which was lovely plus a packet of crisps and a can of juice! The sandwich was a panini with ham and hummous and slices of vine tomoatos. It was absolute heaven yet not a filling I would have thought to try myself. Give it a go and tell me what you think!
Love to all on the Xeloda. It can be hard at times getting the balance right. Did you know Omeprazole comes in different mg. I was told to take mine with my first pain meds of the day and have no problems. I only take 10mg but before I was on a highter dose which I think was 20mg . Val
Hi Val, it’s good to hear you are doing so well. I can manage indoors without a stick, but outside still need it. So, I’m slowly getting there.
I also find the meetings tricky. The 40 minute drive puts me off and by that time of the day, I don’t really feel like it. That’s what I get for living out in the sticks…sunny Dunny!
Sandwiches always taste nice if someone else makes them. It’s usually me making them though!
Strictly is just about to start…I’m not going to watch, not going to watch, not going to…oh go on then…
Isobel
Hi , I have also tried pure aloe Vera on my hands and feet and it is very cooling x
I am finding the Vit B6 is a great help. My heels are ok now.
Does anyone have problems with a runny nose?
Hi Ann - I’m not suffering with runny node but I am sneezing a lot, which I’m guessing is similar cause. I’m about to try anti histamines to see if that helps. Glad your heels are improving - what daily dose of B6 are you on - I might self medicate with that as a further preventative!!
I’m in my rest week of cycle 1, just had blood taken for cycle 2 to start thursday teatime hopefully, but at a 25% reduced rate. I found in week 2 I was really struggling to stay awake in eth afternoons, which when my previous ‘baseline’ day was only 10 - 12 hours losing some of it wasn’t fun. Onc’s immediate reaction was “tiredness is a common side effect and it will get worse so we’ll cut you straight back to see if that helps” - hoping it does. Other than that cycle 1 has been OK - a slightly cantankerous ‘derriere’ on occasion but warning given and only twice daily for a couple of days and I didn’t take Imodium as I’m paranoid about constipation!!
Nina
Isobel - Good luck with you onc appt on Friday.
Val - I’m on 40mg Omeprazole. I think that’s the max dose.
Pinkylou - might give the aloe vera a try on my feet. I think I have some left over from rads.
Ann - I must mention the B6 to my GP tomorrow. I’m slightly anaemic (HB count has dropped a few points each cycle) so will be tested for iron deficiency etc when I do my pre-chemo blood test. Hoping I can take supplements to avoid having a blood transfusion. I also have a problem with my nose running but not as severe as having a cold. Going through a few tissues each day though.
I’ve been doing capecitabine since May 2012 and not just with this drug, but all, I usually get every side effect listed plus a few more! So a few tips to help out.
firstly, most chemos create yeast and many cancers live off sugar, so the first step is to cut out or cut down on yeast and sugar. So cut out the alcohol, vinegar, yeast breads (use sourdoughs), marmite, miso, and sugars. Ideally cut out melon and grapes and do more veg than fruit. You need to get your body as alkaline as possible.
To minimise the PPE (hand and foot syndrome) start using moisturiser on your feet and hands as soon as you start your chemo, Dont wait for the side effects to start. This will delay the onset considerably. Dont use anything with perfume in it and ideally paraben and petroleum free Moisturisers. Use cotton socks and gloves at night and if you are exercising, use chamois cream on your feet as this stops chaffing as the chaffing induces the PPE. If your feet do get to the point where they feel like they are burning, try aloe Vera. I have a big plant and sometimes use bandages with lint to poultice my feet with fresh aloe Vera. Vitamin B complex also reduces the PPE and this is great for you anyway as most breast cancer patients are short of B6 and B12!
If you do get toe fungus use tea tree oil at least 2 x a day and make sure it goes under the affected toe nail and all round the sides. You can get tea tree oil with a little brush for easy application. Wash your hands after touching nails or feet and clean your nail clippers or other instruments before using on other nails You need to be consistent with tea tree as if you stop it or miss a treatment it devalues its action. It is MUCH healthier than using pharma products. Cut the affected nail as low as possiblus and keep it short so you are reducing the fungal area as much as possible. Ideally boil your socks as regular washing doesn’t tend to get the infection out of your socks- same goes if you have athletes foot or garments, boil tights or anything that touches the affected area. If you are feeling very diligent you can buy canestan washing liquid from overseas which helps ensure that you remove the infection from clothes. Very useful if you have vaginal or skin thrush!
when you are taking capecitabine, ensure it is with or after food. To reduce heart burn or tummy ache, chew food slowly and take tablets straight after. Have some ice cold water in the fridge and at the earliest signs of heart burn, drink a glass and this reduce or gets rid of heartburn - but it must be taken early and be ice cold!
get a number of specs of different strengths ( not prescription specs, the cheapies from the chemist) and use wrap round sunglasses when it’s bright or windy. Again get varying degrees of darkness for your sunglasses. i advise this as your sight can change hour by hour, day by day and it reduces the watery ness by using sunglasses. You may also find that bright lights at night time eg car tail or headlights can hurt your eyes and reduce your ability to judge distance ashen driving but I have found that slightly tinted sunnies minimise this!
hope someone finds this useful!