Hi g s I just want to say I had terrible time on iv chemo se wise but I’m on cycle 8 of cap now and not had one se only red feet it’s like I’m not on chemo can still do chores go out etc so try not to worry u might like me and sail through it all the best and lots of luck laurax
Hi Everyone
Well still very sore here and getting slightly irritated now by the constant pain. Am very glad though that I stopped the peaches 2 days early as later on during Mon eve my hands started to crack open. Numerous open sore on them and wearing gloves constanty to avoid infection but lots of things I’m unable to do such as open up my fingers, open things, hold things etc. My children have been brilliant and seem to be excited by the fact that I need help bless them, running to open the cereal packets in the morns, doing up my buttons, squeezing the toothpaste out, even pressing the remote button on the car keys seems to cause bleeding. I have today ordered Udderley Smooth as keep reading about it on here and have even paid £8 for guaranteed del before 1pm on Sat as am now getting desperate. Good news though is that the feet have healed up nicely.
Hope everyone is well
Sam x
Aww sam how awful for you I’m lucky to only have the red ness at moe so unf Wldnt know wat to advise all I’m doing is putting loads cream on I think they wrap them in bandages to help healing wat as onc said I’m surprised they not stopped for a bit tc laura
Hi Everyone
Well Sam you do seem to be suffering with the se’s especially the red feet and hands .I am on day 6 of cycle 2 and am so far doing ok. I even managed to go away last week - twice, and the second time i was walking up hills in Ilfracombe and Woolacombe with my daughter and the fact I was unfit was the only problem, although the pasties and cream teas helped enormously!
It seems everyone has different side effects on this drug, and i have found it is better to try and stop a side effect before it kicks in too much and becomes unmanageable.My onc and clinical nurse who gives me my dosage are both brilliant and listen to every moan I have when I go to the hospital. They have changed my mouthwash to difflan which is more for infections and is stronger, so i have started taking that once a day just to be on the safe side.
Hope all are coping this week
Anne xxx
Hi all
GrannyS
I have been thinking just like you. Have been diagnosed with secondary lung cancer Dec 2011, 3 x taxotare which didnt shrink tumour so now on 2nd lot of cap and xeloda. I found it initially so hard to swallow those huge peach tablets knowing that they were going to make me feel sh… , it didnt make sense. Normally you take pills to feel better!! I could spend 30 mins just looking at them. Also I struggled to eat anything but apparently you need to have something in your stomache with these tabs which didnt help as I had to force feed myself aswell. Now my onc has cut my 2nd lot by 20% and it hasnt been too bad. Lost all my hair again with tax but whispers in the sunlight now appearing, maybe I will need to shampoo again afterall xx Chris x
Hello I haven’t really posted on these forums much before so don’t know if this will work… I’m starting xeloda on Monday (have had various IV chemo and hormones) and wanted to say thank you very much for all the info on this thread it has been very useful and encouraging! fingers crossed… Cx
Hi everyone, hope you are all well, Celiab - hope you are Ok on the peachys and not having too many side effects, my hands and feet are still not healed, went onto antibiotics on Weds as infection in my big toe, hands are still extremely sore and skin come off my finger tips so quite painful, very annoying as busting to do some cross stitch but can’t. My chemo has been delayed from weds until tomorrow and lowered to 1800 because of the sores and it was stopped 2 days early so in total I’ve got 12 days off. Silly hands & feet, very annoying as I so want to stay on this chemo and at the recommended doses.
While I’m on here, can anyone remember the surname of Tammy, cancer fundraiser who has been in the news a lot over previous years and ran/took part in several marathans during her illness. She unfortunalty passed away a couple of years ago but my daughters homework is on someone inspiring & I can’t for the life of me remember her name. I have set up a seperate thread but it is not appearing under latest posts and its not a well used thread so not holding out much hope for an answer on it.
Sam x
Hi to all, esp those who are new to the peachy pills and all the delights in store for fingers and feet (and a few tummies and other places too). Good to see this thread active again - I stumbled on it when checking the Secondaries subforums.
“Week off” thread is here:
breastcancercare.org.uk/community/forums/xeloda-week?page=6#comment-2029506
I’m now on cycle 19 (1150 mg twice daily, one week on, one week off) and doing generally well. But to be honest, my worst problem is my fingernails. They grow extremely slowly, are badly curved, and there is hardened gunge under most of the nails (the medical term is “subungual hyperkeratosis” apparently) EXCEPT for one thumbnail which can pass for normal. I think it’s because I went straight on to capecitabine while still suffering from taxol toxicity. Were any of you on taxol or taxotere/docetaxel immediately before starting Xeloda?
Well I know I’m only on the first week of cycle 1 (day 5 - 1500mg / 1650mg) but I feel pretty OK. Oops - tempting fate with a statement like that! Doesn’t feel like chemo apart from the horrible mouth, crusty nose and tingling feet.
Slathering on the Udderly and trying to look sophisticated in a summer dress with ankle socks and Crocs but think it looks more like mutton dressed as… LOL!
Skirt and socks, yep tell me about it… my husband shudders. Too bad, he’s not on Xeloda!
Mrs Blue - re taxol: I started taking Capecitabine in July 2011, and at the same time started on three weekly Abraxane, which is another taxane, although supposedly a more gentle one as it is “protein-bound” i.e. delivered with albumen. I continued with this for 8 cycles before going on to Capecitabine alone.
I also had the horrid nails although they now seem to be growing out. I’m on a similar dose to you - 1,300 twice daly, but I take mine every day with no breaks. Having said that, my feet were pretty bad a few weeks ago, so I did have a 13 day break to allow them to recover a bit.
I don’t seem to be suffering from hair thinning - I lost my hair with the abraxane but it is growing in quite thickly - thicker than I remember after taxotere 3 years ago (and not curly this time, thank goodness!).
However, I do have peripheral neuropathy in my feet resulting in tingly, slightly numb sensations in my toes, and am not sure if this is an after effect of the abraxane or resulting from the Capecitabine. I seem to remember Susie V mentioning it as a capecitabine problem - anyone else have any experience?
And re Crocs - I actually find the bobbles on the soles too much for my poor feet! I’m reduced to wearing Fitflps and Birkenstocks, or boots with thick socks. Find it very depressing looking at my wardrobe full of shoes which I cannot wear…
Best wishes to all,
Julie xx
Just to let everyone know I too am on capecitabine. This is now my 18th cycle and only had hand foot syndrome and a salty taste in mouth the first 3 cycles. It then cleared up. The worst thing one can do is steep your feet. Just wash and dry as per usual, use a pumice stone very gently and use calmurid cream which is far superior to anything else. It’s free from your GP. It contains lactic acid and urea which draw moisture into the skin. Try to not let your hands/feet get too warm. Use plenty of olive oil for your dry cuticles. Vitamin D3 is good for keeping bones strong and there is strong evidence that it also boosts the immune system. Try to reduce salt and certainly reduce sugary foods to improve health. There is also strong evidence that shows sugary foods may assist in tumour proliferation.
Many ladies complain of fatigue/tiredness, tight muscles in legs etc. this can easily be resolved by some gentle exercise using light hand weights, and getting moving i.e walking, swimming, cycling or whatever you fancy. Sitting around will only make you feel sluggish and lethargic. If you are unable to get out and about, try to sit in the sun, get some fresh air unless you are really feeling rotten. Exercise and a good diet containing plenty of protein (be sensible) helps repair cells and helps keep lymphodaema at bay and increases energy levels.
Last year I was on deaths door due to portal hypertension/jaundice/ascites and lymphodaema. I had 18 litres of fluid removed…then another 10 litres…eeeek!
I was in a wheelchair for weeks and was unable to sleep in a normal bed due to all the swelling. Now, I ride my horse, walk my dogs and regularly walk 8-10 miles with my walking club.
I think the key here is to research all you can, ask your onc pertinent questions and get into a positive frame of mind and have a focus or small goal to aim for. Yes it can be hard, but we ladies are made of strong stuff…!
I wish you all lots of cyber love and prayers
Jane x
Can I just say, dont sit out in the sun unless you use lots of protection and even then be very careful. I have been told by my Macmillan nurse that chemotherapy makes your skin photo sensitive and more likely to burn, and even more so if you are on Capecitabine. Get yourself a high factor suncream and a hat and sit in the shade.
I was on holiday in Crete last week (and it wasnt as hot as here) and with all my efforts to avoid getting burnt, I managed to burn my face, even with high factor sun cream, sunglasses and a hat. Didnt burn anywhere else, except my face. This happened on day 3 of my holiday and after that I spent the rest of the week sat under a tree praying for the redness to go before I got home.
Have got Onc clinic this week and didnt want to turn up with a red face, after being specificly told to keep out of the sun. xxx
Hi Everyone, sorry I haven’t been on for a while, was a bit down, my bloods were low, not low enough to not have chemo on Weds but my hands were still a bit of a state and was put on anitibiotics for an infection in my toe last Tues. They decided to lower my dose to 1800mg twice daily and for 12 days from 1800 x 2 (14 days) and to delay the start until Sat to give time for the anitibiotics to work. Pleased to report, so far so good, spent Sat kept nodding off and was dreading Sunday as hubby working all weekend and from 7am til 8pm on Sunday but it was all good and me and the children had a lovely day, was tired but not exhausted and there is a difference,
My hands are still very sore and peeling well but not bleeding or open sores at the moment and I’m hoping this will stay like it or improve but who knows!! Had a fantastic day last Tues, my friends arranged a lovely lunch for me followed by a make over and a photo shoot and I will get to pick up the 4 photos I chose tomorrow, I’m so pleased with them, was a lovely day after sitting in my doctors open surgery for an hour and a half waiting to get my sores seen and to get anitibiotics. Was a lovely day and didn’t want it to end. Was sitting here at 11pm , everyone was in bed but I didn’t want to take my make up off!!
Chris - Hope your scan went well today, when do you find out the results?
Sam x
Bellasman - Good tips you have given, will try to follow them. Have certain aims and have written down a list of all the fun things /places we are going to go to this summer with the children. Is the hand/foot thing something that your body gets used too and then clears up??
Jane 75 - Thak you for reminding me about the sun, I haven’t been old anything about sunburn although I do add suncream as I’m fair and was slightly reddish in my hair. I have forgotten most of the things I was told about chemo first time round as my last dose was iearly 2009.
Sam x
Laurie - How are you feeling? Do yiou get Udderley on prescription, I have read on here that some people can but we can’t here and I ordered it from Amazon, I know its a bit pricey but if you’re in agony and it lasts ages you don’t mind. LOL at you in your summer dress, socks and crocs. Love the way socks and crocs rhyme but don’t go together!!
Sam x
Hi Sam and fellow Princesses.
I bought the Udderly off Amazon and have only been creaming twice per day. Have taken to wearing cotton gloves when I’m out and especially when driving to reduce friction. Gets a few strange looks - maybe I should just wear a Michael Jackson t-shirt to match!
Worried that I am having little or now SE’s but then when I end up with SE’s I worry about those - can’t win huh! Suppose I should know by now that crummy SE’s are not an indicator of success, having failed on FEC, TAX and Tamoxifen!
Was in London today and went to the natural shoe store in Covnt Garden, hoping to treat myself to something other than Crocs but nothing else came close comfort wise so it’s back to the unenviable choice of lurid mint green or candy cotton pink!
Laurie x
Oh Laurie, the colours they come in, well I borrowed Crocs from my friend in the Mary Jane style, liked them so much until it came to ordering them and realsied that they were doscontinued. Managed to find some in a store online in the Isle Of Wight and they have arrived in Berry!! My god, they are so bright, definatly an indoor shoe! Going to buy some nicer ones in a month or so when some more moeny in a more eye friendly shade.
LOL at the cotton gloves, I also wear them when driving as the school run is 10 miles away, Luckily me and a friend car share so we only do the journey once a day, all the children keep calling me Michael Jackson!
Sam x
Apologies, just read that back and lots of spelling mistakes, sore bloomin fingers!!! Me now off to bed!
Sam x
Hi, I have just taken my first dose of capecitabine! Thank you for all the tips and hints on here. It has helped me prepare for today. Fingers crossed the se’s are minimal as I have only just started to recover from doxetaxol.
I have spinal and pelvic mets that are causing so much pain so I am hoping this chemo will help relieve this discomfort. Any advice is most welcome xxx