I have just got my results for my CT Scan. It seems like my cancer is “all over the place but don’t worry”. If honest I spoke with my BCN and she says not to worry so I won’t from what she has told me it is not tumours but “deposits” I think she said.I have been told to stop taking examastene and then in two weeks start on Xeloda or its proper name Capecitabine. I am not very good with chemo. The last time I had chemo in 2006 I went into a diabetic coma which was not supposed to happen, so a bit nervous.
Hi Marcie,
What a strange description they gave you! Hope you are coping with the news that it has spread. It’s always a shock, even if you already have secondaries (not sure if you did).
I spent yesterday afternoon with four ladies from this site who are on Xeloda - I am sure they will be along later and give you their point of view. They all have their hair, although I think thinning can be a problem. I gather the worst thing is the ‘foot and hand’ syndrome - dreadful dry, sore and cracked hands and feet. There was lots of chat about different creams to try, and slathering cream or manuka honey on and going to bed with socks on! Sounds sticky!
Hope you get on okay with it,
love Jacquie x
It is rare to loose your hair with Xeloda. Many people, including myself have had very good results from this chemo, which can be taken orally as well as intravenously. Like most chemos, it does have its side effects, but some people do not suffer any of them. I think the most common are diarrhea and hand foot syndrome. I myself am on my 8th cycle and i have had the hand foot syndrome quite badly (otherwise I feel really well and have had no other side effects) but scans have shown it to be working, so they are reducing my dose to try and combat the side effect.
Everyone is different, but many have done very well on Xeloda, I am sure you will get many more replies saying the same.
Hi Marcie
I am one of the Xeloda ladies! I am on my 6th cycle and am tolerating it quite well. I am quite tired at the moment but I think that’s because I am at the end of the second week of tablets and still working. I have a scan on Monday to check what is happening, I am really hoping that it is doing it’s job as I will be able to stay on it.
I haven’t had the hand/foot syndrome but I know others have suffered, we were chatting yesterday about different creams and I think vitaminB , that’s what is so good about this site, there is always someone with advice and willing to share their experience. Hope you are coping otherwise but do keep posting and let us know how you are getting on.
Jacquie, it was lovely meeting you yesterday, a really good afternoon !
Kathryn
So sorry to hear about your recent diagnosis/progression, but it’s good that you’ll be trying Xeloda. I’ve been taking it for nearly five years, since I was dx with liver & bone mets, and have great hair, though not so great feet, but there are plenty of creams to try – you can do a search for “capecitabine” or “Xeloda” on these forums to get some hints & tips from all of us “Xeloda Queens”. I started on 2000mg x twice a day, two weeks on and one week off. After a couple of “chemo-breaks” and dose reductions to deal with the side effects, my onc reduced my dose to 1000mg x twice a day, two weeks on and one week off – less than a half-dose. This, combined with Bondronat for my bones and Aromasin for my very ER++ BC, significantly reduced my liver mets, and has kept me stable for years. Hope it works well for you, too!
I am another of the xeloda ladies mentioned by Jacquie (was at the lunch yesterday). I’m just starting my 7th cycle of xeloda and have done very well on it - last scan showed no evidence of disease (though obviously know it is there at microscopic level) and when I started (only 4 months ago) I had many clusters of multiple tumours throughout my liver. I too have had my dose reduced (from 2000 to 1150 twice a day) as it is controlling things well and the oncologist wants to minimise the side effects.
Have had quite sore hands and feet, so it is worth moisturising right from the beginning. And some of us do go to bed with socks (and occasionally gloves) on with the feet (and hands) dripping with creams! Had very little problem with nausea so long as I take the tablets within 30minutes of eating and also don’t allow myself to get too hungry. When I was on the higher dose I did get diarrheoa for a few days towards the end of the 2 weeks on the tablets. On the lower dose now, that isn’t a problem. And I don’t think my hair has even thinned - hair loss I believe is not common on xeloda.
Hope that xeloda works well for you too. Let us know how you get on.
It is two years today (so my oncologist told me yesterday) that I have been on Xeloda without a break. I have had no thinning of the hair (my hair is too thick!) and I’m also one of the very fortunate ones who hasn’t had the foot and hand syndrome that so many do experience.
There are a number of creams that can keep your feet and hands moisturised (such as udder cream and flexitol) and it’s finding one that suits you although I think sometimes if you have the symptoms quite bad then the creams will only have a limited effect on it.
I always take my Xeloda on a full stomach and with water (not any other type of drink). By far (I’ve had FEC and taxol before) this to me is the first chemo that I’ve tolerated really well and being able to carry on with my life!
So good to read positive comments regarding xeloda. Have only just started and am on cycle 2 but had to have my dose reduced from 2000mg twice a day to 3750 split over two doses due to feet problems. Second cycle has been a bit better but have had foot problems again and this time very dry hands am due to go to the onc on Friday so am anticipating another reduction in dose. It’s really positive to hear of people who have had to have dose reductions and are still doing well.
I had my appointment today with my onc nurse. I will start Xeloda in two weeks and I will be on it “continuously”. I am not as “scared” as I thought I would be, considering my history with chemo (coma in 2006 after CMF), as it is in tablet form and I have been told if I get side effects I can’t handle I can stop.
It was explained clearly to me today (and last Friday) that the cancer is around the lung and in the spine (deposits) which is not as bad as I thought it was previously “all over the place”. I still have to go to investigate my colon as they are not sure what is going on there, but I do feel much better from your kind words of support here and since talking to both my BCN and Onc nurse. I just think the consultants don’t know how to tell you things straight.
I will keep you posted when I start Xeloda and once again thank you for all your kind words of support.
Hi Marcie,
I am so glad you’re feeling a bit better. Vague information is so unhelpful. Like you say, you’d think they’d know that. Now you have a much better idea of the extent of your spread and how the treatment will work, which makes a huge difference to ones feelings. Hope it goes well - keep us posted
love jacquie x
I find I have another side-effect - conjunctivitis. It has been puzzling me as to why I keep having inflamed eyes and checked out the possibility. and indeed it is one of the rarer side -effects. So if anyone else is suffering from painful eyes, it is worth considering. Nothing to do about it apart from soothing eyedrops, apparently. And making sure no deeper infection takes hold.
I’ve been having ingrown-toenail-type toe problems - ie septic looking discharge at edge on nails on several toes, and very red & sore. The GP gave me antibiotics, but his swab showed no infection. Onc took me off Xeloda for one cycle to help the toes recover. But my best move was to visit the NHS podiatrists who have sorted out the problem & who I now visit every 3-4 weeks to stop problems recurring.
Thank you all for your comments. This is my second day taking Xeloda so early days. I have been out with friends and I have had a couple of glasses of wine and still working. I will post again in a couple of weeks because I have been given two weeks supply of Xeloda and then I will have a week off.
This is my fifth day on Xeloda. So far so good but yesterday I had the runs. It is strange I had it before I went to work and then nothing until I got home. Today though, I am having a bone scan and when I went to get the dye injected I had to go to the loo. I am watching it before I call anyone. I dont feel ill or anything. My mouth tastes awful and I never really recovered a certain area of my tastes buds from the previous chemo and I am feeling my mouth is “garbage”!!! Always the two places my mouth, because I love to talk and my gut because I enjoy eating!!!
The podiatrist did the usual ingrown toenail procedure to sort out my major problem, filed my nails, etc. and told me to phone for an appointment if things started to get troublesome again. It’s really good to know that they said they will slot me in immediately if I need it. It was all very painless and very effective.
Love, Lynn
Hi Marcie,
I have session of being very loose and then it sorts its self out with out any drugs…
just keep your fluids up and make sure you eat a good amount when you take your chemo…
thanks for the info Lynn,
I am looking after my feet really well and doing all that stuff,
just wanted to make sure I wasn’t missing out on anything!!!
Well I have almost finished my two weeks of Xeloda and I only had those two days of the runs. Last Friday I had a slight temperature and I ached all over and could not get out of bed. I had to stay off work. I spoke to my onc nurse yesterday and was not sure if it was the chemo that had affected me being so achey. What I have been doing since then is having really hot baths and walking around. Last night I had a hot bath before going to bed then first thing this morning as I woke up “stiff” just my legs though. I am at work and my back is hurting but that is expected. I hopefully get my results from my bone scan on 30th October.
I am glad I finish Xeloda on Thursday and then I have a “rest”. It has not been as bad as I thought but it has only been two weeks early days.
Just finished my 2 weeks of xeloda today, will be having a week off. woke up this morning with really bad aches and pains but it is better now. hope that i will rest with the week off!
I finished my 2 weeks of Xeloda yesterday and now on my week off. The hot baths in the mornings and evening and taking pain killers seem to be helping. At least I did a full week at work this week!!!
I know it is the little things, but feel good completing the first cycle, I am sure it will get harder along the way. We should keep in touch privately if you want.