Well I took my first cycle of Xeloday which was 2000mg twice per day and it basically knocked me for six. I actually got worse when I stopped taking it and couldn’t eat or drink for 5 days, running to the toilet and being sick. I have never felt so ill, eventuallly the doctor admitted me and although my bloods were allright on arrival they went down pretty rapidly. I ended up needing 2 bags of blood for my iron level and injections to produce neutophils (don’t know if that’s how you spell it) in my white blood cells.
I had no neutrophils at all which is the cells in your white blood cells that fight off infection. So I was stuck in a side ward getting every antibiotic you think of pumped into me waiting on these cells starting to produce.
Luckily a week later they did and things were on the up from then on. I eventually got out on Friday night, I didn’t like at all. I hadn’t really thought about me or what would happen in the future but I had too much time in hospital lying in a bed and got really scared about the thought of dying and my kids and hubby.
Anyway I’m on the mend now, my legs are a bit shaky but everything else is fine, the Xeloda has really knocked the cancer for six as well. I had a lump on my chest which I can’t feel at all and the one on my lymph node at my neck has got a lot smaller.
Because I am on a trial they won’t be able to take me off Xeloda unless there is progression of my disease which to be honest I can’t see as I can’t feel the lumps and am hoping for it to do the same in my liver or lungs.
My Onc says that some women lack an enzyme and if you do then this is the reaction you would have but I sailed through CMF and apparantly I wouldn’t have done that if I had lacked this. So I am going for a scan on Wed this week (if they manage to get a needle in! as I needed a central line put in my neck in hospital) and they will take it form there.
I’m a bit concerned that I am three weeks late with my next dose but Is uppose these things happen.
Has anybody else had a similar experience with Xeloda and then went on to successfully take if so can you let me know what you onc done. I think my onc is thinking about starting me on a dose 50 % less and taking it from there.
What a horrible time you’ve had, can just imagine how you must have felt especially about the future when you get as low as this. I don’t have any experience of Xeloda but, fingers crossed, it’s doing the job and if you can go onto a lower dose that sounds like a good plan! Just wanted to add my support for what you’re going through and know there will be others along (after all it’s now Monday and the posts get more regular!) to help out.
Take care, hang on in there and hope the scans show what good it’s doing.
Hi Diane, I’m so sorry to hear you have had such a tough and horrible time. I’m on Xeloda at the moment, a couple of friends have been hospitalised because they lack the enzyme you mentioned and they’ve been unable to continue…but as you tolerated CMF I can’t think that’s a problem for you…I hope you can continue, with a lower dose if necessary as it sounds as though it’s working so well on those lumps. Take Care…Belinda…xx
I’ve also heard that some people lack the enzyme which can cause extreme reactions to xeloda. When I began taking it, my onc told me that they test for it before they prescribe it. I think it may take a couple of rounds for your body to adjust to the new regime.
A little scan tip from one who has no veins left to speak of - I often wonder how blood actually gets round me at all. I go to the chemo suite before a scan and get them to put a cannula in so that the radiography crew (not best with needles) do not have to wrestle getting one in. You have to make sure that they know the cannula is for a scan as they have to use the right sized one to cope with the pressure that the contrast dye goes in at. I don’t think they can use a central line, (again because of the pressure with which they inject the dye can cause it to explode). I hope they find nothing untoward and they get your dose sorted out to suit you.
Hi Diane
sorry to hear you have had such a rotten time, we have to put up with so much. I just thought you must be away enjoying yourself on holiday. It is so frightening when things go wrong it makes us think about all those things we can normally put to the back of our minds.
Hope they can sort the dose out so it works its magic, but does not cause you anymore complications.
Diane it sounds like you have had a horrendous time. I hadn’t heard of the enzyme problem and back in 2003 when I had xeloda they certainly weren’t testing for it to my knowledge. I read an article some time back now on the drug which I found disturbing. The study reckoned that 2000mgs twice a day was a higher dose than necessary and that for most people a starting dose of 1800 was better but the drug companies were not promoting this (money!!!) My hospital started me on 1800 and because I reacted quite badly to it reduced to 1200 twice a day. On the 1800mgs dose I lost my appetite, lost a lot of weight and was very sick. I hope you will be able to tolerate the reduced dose and that things continue going in the right direction.
I have had a bad experience on Xeloda also and was rushed into hospital by ambulance. I started on the tablets 1 week ago. The first day i was okay apart from having mild chest pains. On the second day by the evening i was in agony, with severe chest pains, pains going down my arms, diffculty breathing and was being sick. My OH phoned the Oncology unit for some advise and was told to ring 999 imediately. Was taken to A&E where they did a ECG, which came back normal. A&E let me go. On the Sunday was still getting pains so went to see my own doctor on Monday. She was shocked that they let me go. She did another ECG and took some blood to check for cardio enzymes. Went to see my Oncologist on the Thursday… when they did the blood test they forgot to see if they were any enzymes present. The Oncologist said he can’t rule out that the tablets caused a mild heart attack!! I was on 2300mgs twice a day. i am now waiting 3 weeks before staring another treatment.
I was also taken away in an ambulance, I just hope i can continue. My onc said there wasn’t a test for the enzyme and then I was told by the study nurse that there is. I really am beginning to lose trust in my onc she continually tells me things that are incorrect. When I asked her about what the erbitux drug did which prescribed for triple negative patience in the states she simply replied she didn’t know and I had go back and inform her about the fact that in inhibited the growth of EGFR Epidermal Growth Factor Receptors which is present it 65% of triple negetive patients. I really am going to have it out with her.
She also told me that if i only had 3 month left to live in Scotland she couldn’t fight for avastin or anything for me but they could do it in England. I have since had a letter from the Scottish Parliment to say that in extreme circumstances onc can approach a trust for money for licensed drugs. If she has work ethics that allow her to not fight for things for me then I’m not sure I want her in my corner. As I say I need to have a frank and open discussion with her about this that I am not looking forward to but feel I need to do it.
Hi everyone,
I am supposed to be starting Xeloda on Thursday and I am now really scared after reading this!I was on Taxotere and didn’t have a particularly bad time with it(no sickness anyway!)although after the first one I was in hospital for three days with an infection and low blood count but overall it wasn’t as bad as I thought it was going to be.
Alli.
Hi Alli…don’t be scared…it’s such a shame Diane has had a bad time so far but I’m meeting up with 2 forum posters tomorrow who’ve had many months, one of them many years (!) with Xeloda and with very little problems…I too am on the highest dose…2,300mgs and I have no side effects…Good Luck…xx
Hi Belinda,
Thanks very much,you’ve put my mind at rest a bit.My Onc says if I didn’t have too bad a time on Tax then Xeloda will probably be ok for me too.I’ll let you know!
Alli x
Unfortunately some people, like Diane and Kirsty, do have a very hard time on xeloda but there are also many of us who are doing very well on it. I am on my fifth cycle and my tumour markers have dropped from over 400 to 21 so it is really doing its job. I have had some side effects (sore feet and some diarrhoea) but my onc has reduced my dose to 1500mg and I am now tolerating it pretty well. He has also said that he may recommend reducing it again (once I have had a scan to see what is happening in my liver) so that it holds things well whilst giving me minimal side effects. I had weekly Taxol last year and found that had much more of an effect on me in terms of low blood counts/infections/tiredness etc.
So please do feel reassured - hope all goes well on Thursday.
oh god you have really been through the mill - nightmare.
I jsut want to say if you dont feel happy with the onc - ask for someone else. i think its beyond belief that you could reaise something with them, where the info is freely circulating on the internet - and your oncs reply is - whats that? perhaps you can ask to be referred to another hospital, but definitely you need someone in your corner that you can trust and you can have confidence in-
Just like to reassure you that not everyone is effected badly with Xeloda. I also asked alot of people who were on Xeloda, before i started some advise. All of them had no problems at all… i was just one of the unlucky ones.
I wouldn’t be scared I read a lot about people having a wee bit of a problem until the correct dose has been sorted out. I did take a pretty bad reaction to my dose but it did do it’s job really well and I can no longer feel the lump I had in my chest wall, and the one at my neck iis greatly reduced.
I just think sometimes it would be better to start off with a smaller dose and work up to a higher dose once your body becomes more used to the drug.
I am not giving up on this drug myself yet so it hasn’t scared me off completely, the other girls are right if it works and the dose is correct it will be a reallly good chemo to be on and will give you a good quality of life along with it. One thing i did notice that although I managed taxotere well my legs were sore, however if Xeloda ends up working for me my legs were back to normal, which is great to have a wee bit of energy to get on with life and spend quality time with your family that sometimes other chemos stopped me doing because i couldn’t walk for long without my legs feeling like a 90 year olds.
Sorry to hear lots of you are having a bad time on Xeloda. I have been on it for two years and at the beginning I was very unwell and the chemo I think it was just to strong for my body, I also ended up in hospital for two weeks. My Onc gave me two weeks off and then started me on a lower dose 1500mg twice a day and although tumours makers have been slow in going down they have.
I have been very well on Xeloda apart from feet and hand problems but I feel that is a small price to pay.
It’s great to hear that this happened to you and yet you have continued to get good results for 2 years. I am hoping that this will be the case with me and I am certainly not ready to give up on it quite yet. Although I am a wee bit apprehensive about taking it again I will.
Really hope that the reduced dose works for you as it has obviously done for Beli. Can understand why you are apprehensive but hopefully you will find it far more tolerable at the lower dose. ANd it sounds as if it is really working well in terms of shrinking the tumours - hope the scan goes well tomorrow and confirms that.
I’v completed 2 courses of Xeloda with no side effects other than the usual tiredness and occasionally hot hands & feet. With the herceptin, it seems to be working on controlling the recurrence of my inflammatory breast cancer.
Doesn’t mean I won’t have problems in the future, but so fqar so good.
Love, Lynn
