I am on my 34th cycle of Xeloda and have managed quite well on it (has spanned over 2 years). I know I’m one of the ‘lucky’ ones in that I don’t have massive problems with my hands and feet. Fatigue is the worst thing I have to contend with and a bit more this time as my hemoglobin is down far more than it normally is.
I think it’s one of the easier chemos to have (apart from if you suffer badly with the hands and feet).
I have been on Xeloda for 2 and half years my hair did start to thin but am now taking B6 and its fine now, I started with a higher dose then it was reduced as I was not tolerating it well but have been fine ever since. My hands and feet do suffer but put lots of creams on that help a bit and try not to walk to far. I do get tired but it is definitely one of the better chemos.
Beli x
Hi BabyGirl,
I am not sure how to email you or to give you my e-mail address here. If you know how to, let me know. I work for solicitors but I do have times when the girls have colds and I worry and get panicky. I am going to start my second cycle on Friday so I see how I get on this time.
Thanks pinkdove1 and Belinda48 for sharing. So far it seems Xeloda is working for so many of us. I know I have only been on my first cycle, but I can walk a little further before getting breathless and have a little more energy. It could be postive thinking on my part.
My bone scan results says there is no change which is good news but I am still have back ache.
I am trying to get a taxi to and from work as the travelling is the hardest for me. When at work I am fine just doing an hour’s travel to get to and from work is hard.
I have had some numbness and tingling sensation in my hands and feet but nothing more than that. My onc put me on B6 straight away what I did not know I had to continue taking the B6 in my week off three times a day. I have only been taking it once a day on my week off.
I will let you know how I get on after my second cycle.
Thanks for being here girls I really appreciate it.
Hi Marcie
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Lucy
Thank you.
It is strange but I do still feel breathless but can do a bit longer before getting breathless since my first cycle of Xeloda. I am a bit upset because I am still waiting to get my tablets. I refuse to go to the chemo suite because they have me there all day just for my tablets and so something else was arranged but I can’t get them now until around 1 p.m. I like to take this early in the morning but as I say it is one day and then I will be fine.
I don’t like that I have these “mood swings” for no reason. I wonder if it is a “side effect”.
Let me know how you get on BabyGirl. Before I go I have noticed my heels are very tender I hope I dont have the problem with the feet!!!
I am almost through my first week of my second cycle. No problems so far. I use CCS foot cream and I sometimes sleep in my socks but that is because I am cold. I am a bit constipated.
I do get numbness in my hands but in the morning and a “tinkling” sensation during the day with my feet and some fingers. My hands do look very dry and there are some “black” spots under the skin but apart from that so far so good. I am a little bit more breathless this week not sure if it is the weather or what. I am down to have a CT Scan after my third cycle. I hope it will be good news. I do worry when I have to have these things as I dislike needles with a passion.
I will keep you posted and let me know how you are getting on.
I’m glad to have found this thread. I started xeloda today, and trying to be positive at the moment, but it’s a bit hard. We tried taxotere and herceptin initially, and although the tumours in the liver decreased by 50%+, a few months later they started growing again. I’m petrified that xeloda will also give me limited respose,although I’m trying to focus on the fact that it works in a very different way to taxotere, and may therefore be just what I need. It’s been good to hear your stories, which are giving me some more hope.
Well, today it was decided to stop the Xeloda. Toxicity was too high and the benefits have not outweighed the toxic effects. Blood levels were shot.
I am actually deeply relieved as trying to cope with extremely painful hand/foot syndrome has taken a great toll, though disappointed that it did not work better.
Better luck to all who are on it!
Hi everybody, I have been reading about your experiences on xeloda.
As a couple of you already know, I am probably about to start xeloda, having had the news yesterday that five months after finishing taxotere/avastin I now have progression. I may, or may not, be taking it with a new trial drug - still to meet with the trials team at the Marsden to discuss this.
I know many women lead a reasonably normal life while on xeloda, but wondered if you could tell me how normal is normal. For example, one of the things I love to do is swim. Is swimming out of the question (exposure to bugs and so on). Also, has anyone done any travelling while on xeloda? I’d like to organise some city breaks to look forward to - have there been any travelling problems?
Finally, is there anybody else taking xeloda alongside another drug as part of a trial?
Thanks for any advice or help.
Deirdre
Hi Deirdre,
when on capecitabine I found it so easy to manage travel abroad as long as I did not pick the day I got the poos. We did Las Vegas, California, Spain France Switzerland to name a few. Cant help with swimming as couldnt before chemo! Ian always rubbed my feet with plain old e45 cream I have beautiful baby soft pretty feet. They went like fat crusty square things, pleased to say he is keeping up the good work in the foot dept. As I said on another thread to you I had really good shrinkage, wishing you lots of luck.
Love Debsxxx
Hi Deirdre
Me again! I am leading a very normal life really - working 4 very full days a week for the NHS with 3 year old children in a Nursery (who are full of colds etc). Xeloda doesn’t seem to affect blood counts as badly as many other chemos so the infection risks are less. If they are down (as mine have been slightly just once), my onc gives people an extra week off which seems to do the trick. Haven’t been told not to swim etc - must admit my onc is more laid back than some others but he actively encourages me to get on with what I want to. Travelling also isn’t a problem - haven’t been further than Cornwall since I started on it but I know others have. Insurance can still be an issue of course but think people are finding Mia helpful. Again my onc has said he’s happy for me to travel where I want within Europe but might be more cautious about places where hygiene standards aren’t so high (though he just said he would want to discuss it with me, rather than ban me!)
I do get more tired and have to pace myself more than I would like (always led a very full, busy life up until secondary dx), but I get to do most things so long as I plan for them, iykwim. Other than that it is the sore feet and hands which when I was on the higher dosage were a real problem for me - and very painful! Now on the lower dose, it is much less of a problem though I do still moisturise madly to stop them cracking. Occasionally nauseous but only if I don’t take the tablets within 20mins of eating or if I have gone too long without eating - don’t take any medication for that, just eat something quickly! Good excuse to have a packet of biscuits in my bag! And usually there is one day towards the end of the 2nd week when my stomach is upset but immodium usually sorts that out. Very occasionally the reverse and I have needed movicol!
It really is for me very do-able, particularly at the lower dose. Not everyone finds it so but that is true of all the chemos, of course. ANd it has the advantage of being able to carry on on it indefinitely. My onc feels my tumours will grow back again very quickly once I stop chemo, so knowing that I can stay on with the xeloda, is reassuring.
Just one other thing - my onc started me off on 3/4 dose (1800mg x 2 daily) to see how I did with it. He then increased it because I seemed ok but then decreased it again cos the higher dose was too much - he talks about finding my “toxicity level”. Think starting on a slightly lower dose is now recommended by a number of oncs - hopefully (and probably) including yours at the Marsden.
Take care Deirdre - do pm me if I can be any help. Or happy to meet up at some point.
Kay x
Hi Deidre, Xeloda is my first chemo and I’ve found it easier than Arimidex. I’m on the highest dose so do take care of my hands and feet but I tend to ‘forget’ I’m on chemo…have been taking various hormonal treatments since diagnosis so forget these tablets are in any way different. I’m hoping I can stay with Xeloda for a good while as I’ve found it so doable and life hasn’t changed at all…Good Luck
Deirdre-if you look at the post from me just before your first posting, you’ll see that I’ve just started xeloda-like you, taxotere wasn’t much help to me, so it sounds as if our oncs are thinking along the same lines. He’s looking into putting me onto one which is still at trial stage too-it’s quite intriguing to find someone who is virtually on the same path. Good luck with it all-hope to hear how you get on with it.
Hi Elaine, yes, we have a similar path. My tumours (lymph nodes in chest and axilla) shrunk on taxotere/avastin but two new ones have appeared (lymph node in chest again and somewhere else - but I can’t remember where!).
It would be interesting to know what trial your onc has put you onto. The doctor I saw yesterday was talking about combining xeloda with Fluvovanine (its from the same family as vinolrebine and navelbine). But I need to see the trials team first. Looking at the success that Xeloda has had as a single agent with some of the people here I will be asking whether it really is likely to be more beneficial if given in combination, or whether this would just be using up chemos in the cupboard too quickly.
It’s so reassuring to know that many people find the side effects of xeloda more tolerable. I was very, very poorly on taxotere and avastin and was hospitalised three times. I think I may start taking Vit B6 straight away and start getting my feet buffed. If only I had an obliging partner! Maybe it’s time to invest in a weekly foot massage instead of a facial every few weeks!
Deirdre