yep i have the runs with xeloda and ive only been on it for 2 weeks. before that i was on other chemo drugs which made me constipated, but i do feel in the day a little constipated when i want to go and im taking movicol.
work has been difficult for me at the moment with being dx with liver and lungs in jan and the brain mets last month my emotions and coping with the diseases is hard and i forced to take the time off for me to get better, work for me was a normal thing to do and i really wanted to keep hold of it but i had to do whats best for my health.
with work i think you should see how you are with the chemo and take it from there, last thing you want is to over do it and take on more than you can handle. not sure if it is the heat but i tend to get tired throughout the day and try to sleep but am still tired.
I’ve tolerated Xeloda really well and have been on it since 2006. I too started off on a low dose because my liver couldn’t take a higher one but it has been increased since my scans have shown an improvement.
Never had the trots and I seem to tolerate the hand and foot syndrome well. I think it goes to show you that we all react differently.
Can’t really offer you any advice on working or not. I know when I met you at the focus group you wanted to continue and I think if it means a lot to you then I’d see how it goes and talk to those nice people in your small unit not the HR people in the big bit as you were saying!
Hi Tracy
I had the twinges and it usually was followed by a scan that showed reduction. I am having them every now and again on tax and avastin.
So fingers crossed its good news.
I am on Xeloda and have been since May 2006, I started off on a higher dose which didn’'t agree with me I had the runs big time, mind you I really wasn’t very well with my liver as it was very enlarged. Since then I have been on a lower dosage and seem to be fine. My hands and feet get sore and cracked but that has not always been the case it has got worse the longer I have been on Xeloda. I now know that on he second week of my chemo to take it easy and stay off my feet as much as possible. I have tried various of creams which help also Manuka honey is quite good a bit sticky. As regards work I stopped straight away but that because I wanted to have time for myself I felt I deserved it. I do get tired but I think we are all different we all tolerate things differently if you feel you can and want to work then go for it.
Thanks for all the info/advice. It sounds quite promising with regard to work. Like you Hema, I want to carry on working as it feels like keeping a little bit of normality but clearly don’t want to continue if it is really going to be too much. Not fair on the children (and parents) I work with either. But it does sound reasonable to assume that I can keep going for the moment at least.
Have got a new lady in HR, Carol, who is completely different to anyone I’ve ever met from HR before (not including you of course!). She’s very keen to adapt things to make sure I can continue working, has set up regular meetings with me and my line manager, and has put all kinds of things in place for me. So will be very happy to discuss things with her (as well as the staff at the provision). Only problem is that she is with us temporarily for 3 months to fill in for someone else - and leaves at the end of the month. Hope the person who is taking over from her is similar…
im having regular ct scans for secondaries on my liver that were actually there when i was first diognosed with bc in 2006,as i am having pain in that area im to have these scans every 3 mnths .does that mean i wont have to have chemo again? as i had fec before my mastectomy and taxotere afterwards . im getting results of my most recent scan next monday ,and im really scared now as the pains are increasing ,they are copepable with pain killers but i take pain relief for joint pain from the arimadex .thos is getting so confusing ,and due to the sheer number of patients at clinic i dont feel that i get enough time to actually talk things through ,and i dont want to make a fuss .the doctors are overworked enough as it is. ive recenlty lost a sister to bowel and liver cancer so you can see why im worried .i should bevery glad to hear from anyone who has been through similar .thanks lynn x
Hi Lynn,
That is ‘your’ time in the clinic. However busy they are, they have a job to do and an important part of that job is to make sure you understand everything and have the opportunity to ask whatever you want. Please take a list of questions and a supportive partner/friend who won’t let you leave until you have answers. I think often they don’t tell you stuff until you ask because we are all different and some people don’t want to know. Maybe I’m just being charitable and they are not giving you enough time!
Wishing you the very best for Monday, and a hug for the waiting…
Jacquie x
i agree with Jacquie, i got to a point where i was trying to cope with the pain and thought it was normal to feel what i was feelilng. you need to ask as many questions as you need, it may feel that your taking up all their time but this is YOUR TIME and you need your questions answered.
dont do what i did and wait until the last minute for effective pain relif, i was put on other small meds which didnt work at all and now im on pain killer patches everyday which helps alot.
Me and hubbie always take a list of questions to the docs so we dont forget, it feels wierd at first but atleast you will leave the clinic with questions answered and much happier.
I started Xeloda in December 07 for mets in the liver, bones and lymph nodes of the chest. Back then I couldn’t walk more than 15 steps without becoming out of breath. Things gradually improved and my latest scans showed significant shrinkage of the tumours.
My greatest problem with Xeloda is that initially it made me lose my appetite and I lost a stone in weight. I’ve gained half of what I lost now and feel much better. I have level 1 hand and foot syndrome (redness but no pain or peeling) but I’ve been applying aqueous cream faithfully every night and morning. Keep a note of all side-effects and mention them each time you go to the clinic. There are lots of medications that can help and your oncology team really do want to make you as comfortable as possible.
As regards work, I think it’s an individual thing. I haven’t been working since my mets diagnosis but that’s because I still get tired and need my afternoon nap! Make sure you apply for Disability Living Allowance under the special rules. You get the care component automatically as long as your GP agrees to give you a DS 1500 report and you can even get it if you work.
Other than this all can say is good luck. It does get easier, I promise. You just find your way of coping.
Started on xeloda today - reduced dose of 1800mg twice a day which he will increase if I tolerate it well. No side effects yet!! ANd feel so much better for knowing something is now hopefully stopping the tumours in their track. Good to hear that it has shrunk your tumours so well - there seem to be quite a lot of people who are doing really well on it. Hubby has been put on foot rubbing duties!
Think I have decided just to see how things go with work - chatted to onc today briefly about it and he said he thought I should just “carry on as normal”! Claimed for DLA after my failed liver resection in January so that is all sorted. I haven’t bothered with a blue badge as my mobility has been reasonable (in fact was improving as I recovered from the taxol last year and the surgery) but might do now, so that it’s there if I need it.
Lynn - as others have said, you really do need to ask those questions you have as otherwise you are just putting yourself under tremendous strain. Have you got a breast care nurse or oncology liaison nurse you could chat to? Sometimes that’s easier than trying to grab the onc and they have in the past raised issues with the onc for me, if they don’t know the answers. I think Jacquie is right too in saying that they don’t always tell you stuff - think they are always trying to judge what info you as an individual need/want to hear.
Tracey - yes, I do have twinges from time to time in my liver and I’m never sure whether it’s from my tumours or if it’s the xeloda doing its work! I like to think it’s the xeloda doing its work…
Kay - really pleased that you’ve got a different HR person. It makes a huge difference and I hope that I helped a lot of our employees as I saw myself as the ‘go-between’ for them and their particular manager and finding the best possible solution for both. Good luck with the Xeloda - I’ve been very lucky on it in that I’ve tolerated it very well and fingers crossed that you will do as well.
i recently had a welfare benefit person help fill in the DLA form and im just waiting to see if my onc will fillin the DS1500 report form which im hoping he will. if the claim goes through i will be applying for a blue badge too, i have to drive into london for my treatment so will help with congestion charge and parking,
i also had a macmillian nurse come to see me this weel. she was really helpful and helps liase with my gp and onc if need be. as my onc is in london i can ring her up at anytime if i start to feel worse it made me feel at ease knowing that there is someone here locally for me.