Hello. I am hoping to hear from people who have been on Xeloda. I was on a trial at Peter Mac but unfortunately my liver mets have not responded as well as hoped. I will be starting on Xeloda next week and am anxious. Any kind people out there that can give me some idea what I should expect. Thank you. Take care. Sandra xxxx

Sure. That would be great to catch up. Glad you are well. Xxxxx

Be in touch closer to the day to organise :) @Scooper

Hi ScooperI am a Peter Mac patient as well and it looks like I am about to start on Xeloda in the next week or two. I have been on Afinitor and had a great response but have developed pneumonitis (even when on a lower dose of Afinitor). I have bone mets, although the Afinitor made them disappear. My oncologist says that Xeloda is well tolerated, but if you look at the list of side effects they are long (as they are with any chemotherapeutic drug). I am planning on starting a new job four days per week and my oncologist says I should be able to manage.Good luck and would love to hear how you go. Cheers Lisa X

Hi ladies,welcolme to the xeloda club,as with all kinds of drugs, they all have their own list of side effects and of course everyone reacts differently, I have beem on Xeloda for 18 months, and I know of several other ladies on this site who are also on xeloda or have been on it.Xeloda is a very good drug for reducing the size of tumours and for reducing cancer markers,I wont say its a walk in the park, as its not, the dosage you are given depends on your height and weight and also the length of time on the drug, ie 14 days on then 7 days off, personally I am on 12 days on then 9 days off, this suited me better after some trial and error, its a matter of being on the drug first to see how well you manage it, the best piece of advice I can give is to keep your hands and feet well moistureized starting at least 5 days before you start the drug, I will add, that 1% of the population do not tolerate this drug as its not broken down in the body, this results in more severe side effects, there is a blood test that you can have to see if you are in that 1%, my oncologist advised me of this. As with all new things, have an open mind, give it a go and see how your react, if you have any concerns at all, notify your oncologist or breast care nurse, xeloda can have effects on your belly, ie diahhorea, so keep a pack of gastro stop handy, and like all chemo drugs you may experience fatigue, Im sure that when you are put on this drug you will have it all explained to you, I might add its also a drug that at least for me, my oncologist has been able to give me small breaks, especially when I have had a very special family function or when we just recently went on holidays,anyway ladies see how you go,I will just add for me my cancer markers have been sitting on 13, yes 13 for the last few months, I see my oncologist every 6 weeks and I have a blood test every 19 days to check my tumour markers and all of my other things liver kidney etc., I also have metastatic breast cancer, which is in my liver and my spine, I was previously on Affinitor and Aromisin,this breast cancer gig is hard, but with help and support we can manage on a day to day basis,please let us know how you go on the drug as there may be other tips and tricks I can offer, its all a matter of how we individually react, good luck, wendy55

Thank you Wendy for all your wonderful advice. I am pleased that it is working so well for you. I have just come off a trial at Peter Mac and I must say the side effects were fairly difficult to manage. I have lost over 20kgs since the start of June. Lucky I had plenty to spare.Best of luck to you Lisa as you start on Xeloda. I admire you for being able to work. Wishing you both best wishes and lovesandra xxx

Xeloda | BCNA Online Network

13 Replies

Cate64
Member
9 years ago
Be in touch closer to the day to organise :) @Scooper

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Scooper
Member
9 years ago
Sure. That would be great to catch up. Glad you are well. Xxxxx
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Cate64
Member
9 years ago
@Scooper I am well... very.. relatively no side effects.. i consider i gave got off very lightly indeed... i am on rdo 20th Oct, if your free for a coffee catchup
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Scooper
Member
9 years ago
Hi Cate. How are you going? Well I hope. Starting tomorrow. Was on a trial at Peter Mac which was pretty rugged with terrible side effects. Off that now. Hope you are doing well and haven't had too many side effects. Xxxxxx
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Cate64
Member
9 years ago
Me me me Sandra.... i am currently on my 10th cycle....
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Scooper
Member
9 years ago
Hi Cher
thank you for your reply. Starting tomorrow. Am very anxious but hope all goes well. Good luck with your treatment and I hope your side effects are minimal. Xxx
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Shirleyt67
Member
9 years ago
Hi Sandra,

I started on Xeloda 5 weeks ago and have had minimal side effects so far. I am just about to finish my second course (2 weeks on, 1 week off) and for the past few days my feet have been a little bit tender on and off but only very mildly. The main side effect I have is radiation recall which can apparently be caused by Chemo but I'm told is very rare with Xeloda (lucky me!). I know it's different for everyone so just wanted to wish you all the best and hope all goes well. Cher x
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Scooper
Member
9 years ago
Hi Ange and Tennille. I am sorry that you both had such bad experiences with Xeloda. Yes we are all different in the way that we react. I am scared of these ghastly side effects. Thank you for replying to me and I hope your current treatments are working well for you both. Sandra xxxx
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Tennille
Member
9 years ago
Unfortunately I lasted 4 days on Xeloda as I too am in the percentage that does not tolerate it. For those that do though, I have heard its a great drug. I am currently on Eribulin and my Onc has hope that one day I may be able to try Xeloda again on a lower dose. I am in no hurry for that day. Good luck. Prayers are with you.
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angg66
Member
9 years ago
Hi Sandra,
My experience on Xeloda was not so good. I was given it in July last year for my pesky mets. I was to take it 2 weeks on & then rest for one week. I took the drugs for two weeks & it affected my stomach so badly that I ended up in hospital for 3 weeks with chronic diarrhoea. My oncologist told me that I am in the 10% of people who cannot tolerate Xeloda. Aren't I lucky? Anyway one thing I've learnt is that we are all different in the way we react to drugs & chemo etc. So it is just a matter of taking it & seeing how your body reacts. Good luck with it. Ange xx
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Xeloda

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