Hi
I am writing on behalf of a friend Amber who some of you know. She started the tablet chemo - Xelodea for her liver mets last Thursday morning and ended up in hospital on Friday due to constant vomiting and also pain in her shoulder. She was discharged and given anti-sickness tablets and her onc wants her to continue with the chemo.
Obviously she is nervous about taking them on Monday. Has anyone had a bad reaction on their first cycle. Because she has not usualy reacted badly with other chemos I am wondering whether she had a stomach bug at the same time.
It would be great if you could respond to this.
Hi,
I have just started my second cycle of cabecitobine, and had nausea and bloating with my first cycle, although no vomiting. The anti sickness tablets
worked once I started taking them regularly. I also got more tumour pain
I know that sometimes the dose of the chemo has to be reduced-which apparently doen’t reduce its effectiveness, so obviously if she does start vomiting again, I’m sure her oncologist would review the situation.
There are also lots of viral stomach bugs around at the moment, so hopefully thats what caused the vomiting and she’ll be ok.
Best wishes,
Nicky
Hi ripley,
I had problems with xeloda and severe vomiting - the worst reaction I ever had on chemo! The dose was reduced but I then developed plantar palmar syndrome and as I had this problem on ECF (5FU part of it) I only got as far as 2.5 cycles and was taken off it. It was also the only time I ever lost weight on drugs too - a stone and I couldnt really afford to lose it!. I think on the reduced dose I could have continued if it hadnt been for the p.p. syndrome.
Do remember me to Amber - if it is the same one she comes from my neck of the woods - near Gatwick. Tell her it is Dawn from the bonsai nursery 
Dawnhc
Please tell Amber I and the rest of the ladies, (she will know who I mean) send our love and hope things get better. Thank you so much Ripley…xx
… And the same goes for me, could you pass on my love to Amber, and tell her I am still rooting for her to be one of our xeloda queens? Many thanks.
Jenny
xx
Ok, didn’t mean to hijack this thread but am a little nervous now as I am meant to be starting this therapy on Wednesday. I know they will be giving me anti-nausea tablets and tablets if i get diahrohea (sorry spelling), but am nervous. Do people always react like this to, to this med?
kiwi
kiwigirl - i should have added to my post that most of what i hear about xeloda is really good - it is generally very well tolerated. But like most things there are always exceptions. Hope it goes well for you, just make sure you have a bag of goodies to take home with all the remedies in case.
Dawn
xxx
Hi Kiwi – I’m one of the “Xeloda Queens” mentioned by Jennywren – I’ve been taking this drug for over four years, following my liver met diagnosis (also have bone mets, for which I take ibandronic acid tablets). For over two years, I’ve been on half my original dose, to reduce the hand/foot syndrome and various “digestive” side effects – I have very few side effects now, and really almost don’t notice I’m taking this drug. A lot of my chums have tried capecitabine – it’s worked very well for some but not for others, and we’ve all had a slightly different reaction, as you would expect, given we’re all different and our BC affects us all in different ways. I know that Amber has had a tough time with this, but hopefully her onc will reduce her dose to see if that works better for her – our oncs seem to all prescribe a very high dose at first, to really zap the nasties, and then reduce the dose if/when we get challenging side effects. My onc is committed to keeping me on this chemo for as long as it helps with my liver mets, hence reducing the dose so I don’t have to stop taking it because of nasty side effects – with BC mets we benefit most from a balance between effective treatments and quality of life. Hope it works as well for you as it has for me!
Ripley – please give Amber many hugs and much love from me!
Marilyn xx
Thanks Dawn and Marilyn,
Feel a wee bit better about things, just nerve wracking as this is the first time I have had to go the chemo route. Can I ask Marilyn do you manage to work? I work part time and feel that it helps me to work but am nervous about side effects and how I will react at work (if you get my drift).
Kiwi
Hi again Kiwi
Yes, I understand about wanting to work – I also felt it would maintain some “normality” in my life, give me something I could control (when everyting else was so out of control), and keep hold of some social interaction – I refused to sit at home and stare at the walls waiting for the end! I worked full-time in a regeneration team, and continued to work when I was diagnosed with mets in October 2003 until the end of the regeneration programme last year. My managers were fabulously supportive when I was diagnosed – significantly changed my work and built in flexibility to reduce stress and enable me to continue in the team. I know that might not be the case for most of us, and don’t know about your work, but please remember that we are covered by the Disability Discrimination Act (DDA), which directs employers to take reasonable action to accommodate & support us at work.
I took early retirement on ill-health grounds when the regeneration programme ended (I’m 58) because I knew I would have difficulty doing another job (and no interview panel would be happy to hear “I need frequent time off, sometimes with little notice . . .”, DDA or not) and also felt strongly I should spend my “remaining” time with my partner, who had also retired. This has worked very well for me, as my pension is reasonable and I’ve had much more energy and a better time all around since stopping work, even though I loved my job. Everyone is different, though – many of my chums are continuing to work with BC mets.
I didn’t have any obvious side effects from capecitabine for the first few cycles, and was able to negotiate “chemo breaks” with my onc when the hand/foot and digestive stuff kicked in, but it really didn’t impact on my work too much as I mainly sat in an office in front of a computer or went to meetings while I was at work. I guess if you’re doing a lot of physical work, that might be different.
We all get so worried whenever we have a change in treatment, and starting chemo is of course a milestone for us all, but please try not to worry too much about side effects, and see how you go on. This chemo significantly shrunk and/or disappeared some of my liver mets, and has kept them “stable” for over four years, and I hope it works as well for you.
Marilyn xx
p.s. forgot to add that the reason I could stay at work for so long was because I felt really well, with no pain and “normal” bloods and liver function test results – I know that a lot of my chums couldn’t have stayed at work because their pain or fatigue made it impossible for them. We’re all different, and make different decisions with all of this!
Marilyn xx
Thank you to you all for replying.
India1 and Kwiigirl - I am sure you will be alright on this drug
Dawnhc and Marlif thank you for your comments.
It can be a sneaky chemo as you think it will not be too bad as it is in tablet form. When I was on it I had very bad diareoha and peeling feet. I did however take anti-sickness tablets through it. Prahaps now Amber has her anti-sickness she will be better on it.
Belinda and Jenny - I am hopefully seeing her today so I have printed this out and will give her these messages.
God Bless you all.
I know that they are using Xeloda as part of the TACT 2 trial and various other trials for primary bc as well as us with secondaries who have already been through various chemos before we start xeloda.
From what I’ve seen in clinic from talking to other women there, if they are taking it for primary bc then they seem to have less side effects than those who have had previous chemos. The hand/foot syndrome thing seem to be the most common side effect and I had it very bad the first cycle but I had the maximum dose and once they reduced it, this improved. I took xeloda for about 7 months when the oncs stopped it as my feet were really bad (i’d really overdone it with the walking side of things and I have multiple secondaries) and my lung mets grew again suddenly and very quickly.
I found it best to do as instructed and take the tablets within 15 -30 mins of eating food or else I would get diarhhoea. Even when I got diarhhoea, I found the imodium helped. I used to feel sick in the first few days of each cycle but used to take anti-sickness tablets for 3 days and then be OK.
The main problem seemed to be for me was tiredness about 4th cycle onwards but I still worked part time.
Re - Amber’s pain in her shoulder - that is often due to a ‘referred pain’ when the stomach area is irritated eg by severe sickness.
Remember, everyone reacts differently to chemos and sometimes I’ve had the rarer side effects and sometimes the usual ones.
As someone else pointed out, the oncs have a habit of starting everyone on the max dose for weight but then usually have to reduce it.
I think poor Amber has been really unlucky to have this much sickness on xeloda and I really hope that she feels better soon and hopefully with the antisickness tablets she will. Hopefully, the onc will reduce the dose if it continues.
Please forward my best wishes to Amber and I’m sorry that she has been this poorly.
Kate
Thanks everyone for talking so frankly on this topic. Yes, it is nerve wracking when we have to change meds, but Marilyn you have given me hope, managing 4 years on this is wonderful. Hope it continues for you and that I get a little of your good luck.
kiwi