Community Champion
Posts: 4,507
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lynn

I remember years ago when the E/E combo was first being used in the UK that many of the ladies who started it had problems with mouth ulcers and these only improved when a dose reduction of the Everomilus part was made. My oncologist at the time had told me what a remarkable drug this was (he had worked on the research side of it before it became available on the NHS) and I said that he should read these forums as the SEs were pretty awful for most ladies! 

Hopefully you won’t get any mouth ulcers on Cape, I didn’t when I was on it and there’s not many ladies on here who have reported them although obviously a few might get them. Again,  any moons ago, ladies on Cape used to recount how they got blisters on their finger tips by handling the tablets but I (as did many others at the time) suspect that was more to do with the SEs of the chemo on the hands, which is a widely reported SE.

Good luck for the 21st and hope it works well for you.

Nicky x

ps Hi George, have a great trip to Valencia, haven’t been there myself but have heard it is a very pretty city. X

Member
Posts: 328
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lynn

I was on the E+E combo too and had horrendous mouth ulcers; they were so bad I was drinking from a straw at one point. The treatment did not suit me so, after 3 months, I was changed to Taxol. I have not suffered from mouth ulcers since 😊
3 weeks in France sounds wonderful. We are just having 6 days in Valencia, but looking forward to it. Fly out tomorrow 😎
Have a good week and feel free to ask any more questions should they arise.

George x
Member
Posts: 609
Registered: ‎10-10-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks again for responding, I received a letter from hospital yesterday and I will be starting Cap on the 21 Sept.

 

After Letroxole stopped working I was on Everolimus\Exemestane for a couple of months - I had the most horrible mouth ulcers and I understand that Cap can cause these as well.  Has anybody else suffered from these and do they eventually settle down, I am going to stock up with mouthwash etc.

 

George have a nice time in Valencia, we were in France for 3 weeks, had a fab time but It was very tiring, came home for a rest.

 

xx

 

Member
Posts: 328
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lynn

Hope you are feeling a little more reassured now following Kirky's reply. I have been on Cape for 2 years with a 7 month break last year for an op. It has been a very effective chemo for me eliminating 4 liver mets and reducing the last one to a dot. Unfortunately, my TMs are starting to rise so onc said i will probably have to go on another chemo following scan next month.
I started on a high dose of Cape which I found tough during my week off as a had awful trouble with big D. Dose reduced to 1500 twice a day which really helped with SEs. I was worried about reduction, but Cape continued to be effective and my onc said it either works or it doesn't and that he has patients on very low doses for a variety of reasons.
Anyway, good luck with your treatment and great to hear you managed to fit in a holiday before you start your new regime. We are off to Valencia next week 😎
Keep us posted.

George x
Member
Posts: 609
Registered: ‎10-10-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Paula.  The Onc did say that one of the SEs of Cape is diahrea and that he would want to monitor that because I do have IBS symptoms caused by the Peritoneal mets and have lost a lot of weight.  I can see now that starting  low and increasing is a good way to go for  that reason.

 

glad to hea4 tha5 it worked for a while and that you are remaining stable at the moment.

Member
Posts: 74
Registered: ‎28-06-2013

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lynn

I started this way round. Mainly because I had so many SE on FEC. I started on 800mg twice a day and increased monthly to 2000 then reduced back to 1500 as that was the bst balance of benefit against SE. 

I had good results, some reduction and then stable for 20 months.

Unfortunately stopped working and am now on Pac which again is keeping me stable for now.

Best of luck with your treatment.

Paula

Member
Posts: 609
Registered: ‎10-10-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello everyone

I saw Oncologist today and we agreed to start cape.

 

I had 16 pacitaxitel which kept me stable but made no improvement .  He put me on Tamoxifen but I had to stop it after a couple of weeks as I had such awful UTIs. Have had to have two lots of antibiotics and am still suffering a little but almost better now.

 

i have not had any treatment for four weeks as I was away on holiday, after Pacitaxitel my TMs were 272 but the reading from yesterdays bloods was 1235 so a vast increase.  

 

I will  start cap in approx 2 weeks, meanwhile he has ordered another scan as a starting point to monitor how cape works 

 

I have read through a lot of the posts on this thread and he seems to be ordering things differently for me, he says that he will start me on a low dose and then increase if I tolerate it okay - seems to be the opposite for most others who start on a higher dose and then reduce???   Has Any else done it this way round ?

 

my cancer is lobular and the problem area seems to be in my peritoneal - with some bone mets in spine and pelvis.  Hoping that there has been no further spread since last scan which was 3 months ago.

 

onc has always said that TMs are a good indicator for me so I am still reeling from the massive increase.

 

was on letrozole for almost five years with very few side effects but nothing seems to have worked since last year when TMs started to rise because of peritoneal 

 

sorry feeling a bit bit down but will pick myself up tomorrow 

 

xx

 

 

 

 

Member
Posts: 328
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Janie, sorry I can't help with your question. I have been on Cape for 2 years now ( with a 7 month break last year) but my onc has never really commented on my liver enzymes; he tends to focus on whether kidney/ liver function is within normal range. Could you phone your SBC nurse for clarification or ask to speak to your oncologist again, just to put your mind at rest? It does sound as if your onc is very much on the ball as he is requesting a scan.
Sorry I can't be any more help. Hope SEs are not too bad. I have learned to live with red, peeling sore feet🙄
Keep us posted

George
Member
Posts: 51
Registered: ‎18-01-2017

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello 

has anyone had raised liver enzymes while on Capecitabine? My liver function had been good for the last three years but has suddenly jumped over the last cycle. Been on Cape nearly a year now. I'm worried

 the c has spread to the liver. Onc seemed puzzled and concerned and has ordered an urgent scan. Can't believe I didn't ask if it could be due to spread of cancer!  

Hope you are all doing great 

 

Janie xxx

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Xeloda / Capecitabine - Your Top Tips, please?

Bumping up for any new ladies reading.
JMP
Member
Posts: 21
Registered: ‎09-10-2014

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Mulligans,
I had an overdue eye check up yesterday and my left eye ( has Asteroid Hylosis) is definitely worse than previously. The Optometrist has booked me in for a scan of both eyes early July. I have implants in both eyes ( had cataracts) and been monitored for Glaucoma as it is in the family genetics.
The Optometrist did recommend some eye drops and I have requested them on prescription: Hycosan Extra.
Judith xx
Member
Posts: 44
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Judith my eye sight has gone a bit fuzzy. Only now abd tgen but get very blurred and tgen it clwars again. Weird. Might be a side effect as my eyesight always goes a bit foggy when i start a new drug
Member
Posts: 12
Registered: ‎14-04-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for your reply Judith. Good luck with wokring out the retirement. 

JMP
Member
Posts: 21
Registered: ‎09-10-2014

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Diamond23 and Sarah Louise, I’m on Capecitabine cycle 7. My dose was reduced from 4x tablets morning and evening to 3 instead ( current cycle) as I was so tired all the time.
Now I’m feeling better the diarrhoea has reduced too. I’m 61 and considering medical retirement too, UNISON are currently looking into that for me.
There’s no way I can commute 3 hours (to and from) to work in London daily now.
I’m having an eye check this week as eye sight hard deteriorated too since Feb 18, could be another SE of Cape.
Judith xx
Member
Posts: 1
Registered: ‎17-06-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

I am on my 8th cycle of capecitabine, i have cholangiocarcinoma which is nasty bile duct cancer. I had breast cancer in 2007/2008 clear now of that. I have tolerated cape quite well with some hand foot syndrome , insomnia is a problem I use half a restavit tablet when it gets too bad and the brain wont't switch off it works well for me.
I too am considering retirement, do i want on my headstone 'she was a loyal employee till the day she died' hahaha NO I DO NOT. No accolades for that. Bless you and fight the the fight!
Member
Posts: 44
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Sarahlouise, i felt fine on first cycle but goy hit realky badly on 2nd cycle. My feet were so bad. They did peel after that cycle and the skin was coming off in sheets (yes gross i know) after that i got a 20% decrease and it helped massively. I thought i would never feel better but i feel very well now on cycle 4. My hand killed me on 2nd cycle too. Couldnt open drawers in my kitchen or cut things for cooking. It will pass.
I had to put trainers on if i needed to get up and go to loo in middle of night. You need good trainers/sketcher type shoes (i got cheap version in tesco for 15 quid) wear them much as you can out and about. I wead crocs in house too which help to wirh cream on my feet and let them breathe.
As awful as you feel now it will get better
Member
Posts: 12
Registered: ‎14-04-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Tatyana. Makes me feel a bit better. I am on the fouth type of nausea pill. None of them seem to make any difference. 

Member
Posts: 763
Registered: ‎30-05-2017

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi SarahLousie,
Sorry you've had a bad start with cape. I was lucky and only had very mild SEs. But if you look back through this thread, you'll see that a lot of people have seen a great improvement after their dose was reduced, so hopefully this will work for you. A 20 percent reduction is standard in the first instance, I think. Also some of the SEs, especially nausea, do get better of their own accord as your body adjusts. Have you got some anti nausea pills?
Best wishes for feeling better soon. Hang on in there!
Member
Posts: 137
Registered: ‎16-05-2014

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Sarah

I am on Capecitibane and have a few days left of cycle 6 but that's in conjunction with the evil Docetaxal. I have had awful hand & foot syndrome all the way through but mainly on my hands. They looked like they'd been scolded in hot water and then the skin would spilt. My chemo nurse gave me some cream which helped a bit but she also heard udder cream worked. Hope this helps.

Teresa
X
Member
Posts: 328
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Sarah

First of all, welcome ( not that you particularly want to be here, I know). Sorry to hear you are suffering with so many side effects. I have just finished cycle 13 after re- starting Cape last September, but I do remember feeling awful after my first cycle and, like you, I was very tired. It is only recently that I have had sore feet, but Udderley Smooth cream ( you can get it on Amazon) has helped enormously. In answer to your question, I had two dose reductions which helped a lot. I am now on 1,500 x2 a day. I have to say, after 13 cycles, I am not feeling too bad at all. My only worry now is that it will stop working for me; It has certainly been successful in getting rid of most of my liver mets.
Make the most of your week off and I am sure you will feel better after a dose reduction. Please feel free to ask any more questions if you have any, especially as there are lots of lovely ladies on this thread who will be happy to help.

George 🤗