capecitabine doses

I finished the epirubicin part of my chemo and have just started the first of four cycles of capecitabine. My oncologist warned me about the side effects and told me if they were too severe to stop taking it and report back to them. They would be able to adjust the dosage if that happens, she said. I’ve been researching the drug a little and it seems that some research shows that lowering the dosage has no effect on outcomes. This left me wondering why they don’t prescribe a lower dosage in the first place rather than run the risk of some people experiencing severe diarrohoea, sore hands and feet etc and I will probably have this discussion with my onc next week. I was just wondering what doses other people were having- I know everyone is different but am just curious- they’ve put me on 4000 mg daily (in some of the research there seems to be some complicated way of calculating it involving your square metres of body surface- I guess they use weight and height to calculate that). Also, has anybody had their dose reduced due to excessive side effects and how long did they take to kick in. I’m feeling a bit nervous as I had got used to the pattern of the Epirubicin and how it affected me- now I’m not sure what to expect, which is one of the worst things about the whole breast cancer thing.
Hope everyone coping OK with their chemo- best of luck
Jane

Hi,
I am on the 3rd cycle of Capecitabine now and I am on a dose of 10 tablets per day at a strength of 500mg per tablet. So 5000mg per day. And I am 5ft 4ins and 100kg.
I take 5 tablets in the morning and 5 in the evenings and I find it best to take them 15-20 mins after eating.
I was worried about side effects after my CCN told me them but fortunately I have had few.
The diarrhea is a lot less than when I was on the Epirubicin
The skin on my hands and feet gets very dry especially at the end of the 2 weeks of tablets but I cream well and have had no problems other than a bit of tenderness on the bottom of my feet at the end of the 2nd cycle of tablets. But I had no redness on my feet. Im waiting to see what happens at the end of this cycle. My mouth has has a little bit of tenderness but no sore areas and no mouth ulcers. My mouth could be aggravated because I cant wear my dentures so the extra pressure on my gums when I eat isnt helping. I gargle with salt water and this helps.
I feel a little nauseous at times but I sip iced water (sometimes with a vit C soluble tablet in which flavours it) and that stops it.

Hope this helps and good luck with your treatment.

I`ve just got my date for my pre radiotherapy which starts after I finish the Capecitabine.

Lots of hugs.
Margaret

Hi Margaret,
Thanks for replying- it’s reassuring to hear you are on your third cycle of epi and coping with the side effects well- it seems it might be easier than the epi which was what I was hoping. How is your hair doing- I am bored with being a baldie now. At first, I didn’t mind- it was a bit of a novelty but now I’m fed up with it and want my hair back.
Good luck with the rest of your chemo and with the radiotherapy. Do you feel you can see the light at the end of the tunnel now?
Thanks again
Jane

I`ve got about 1/2 inch of hair now but my hair usually grows slowly. My CCN told me that someone on the same arm of the trial had an inch at this stage.
Are you on 3 or 4 of the trial. I am on 4 and did my back ache from the injection the day after the epirubicin. But it was worth it to cut a month off the epirubicin treatment…
But I am diabetic and it complicated that.
Yes, I can now see light. I broke it down into parts I could cope with. First the mastectomy then the Epi and now the Capecitabine. I feel I can start planning for the Rads and can think about the hormone therapy afterwards.
And getting a life again.
love
Margaret

Jane,

I was on the Tact 2 Trial and had Epi followed by capecitabine tablets. 10 per day - 5 morning & 5 night. I asked the question about why are you given a high dose when it is said that a lower dose is just as effective. I was told that it is because different people metabolise the drug differently.
My hair started to grow back when I started the second course of capecitabine tablets.

Janeyb

I’m on the tact 2 trial, arm 3, and will pick up my 4th cycle of pills on Tuesday.I’m on 4600mg a day which works out at 6 tablets morning and 6 tablets evening.!..4 of 500mg and 2 of 150mg.

My hair started growing back within 2 weeks of starting the capecitabine…have gone through the “Minty from Eastenders” look and now at the "baddy lady from Blakes Seven " stage…Not brave enough to go scarfless yet…but maybe soon.
Tracyxx

Hi everyone,
I’m on Tact 2 arm 3- like Tracy and Janey I think. I had hoped I’d get the Arm 2 or 4 with the neulasta injection to speed things up like you had Margaret, and it was one of the reasons I chose to go on the trial, the chance of speeding The whole process up a bit. In the end, I didn’t get it, but I’m happier so far with the capecitabine as no cannulas involved- hooray! I had run out of suitable veins anyway, and the last epi process was a bit of a performance even getting the cannula in.
You have all made me feel more positive about the hair- seems it only takes a few weeks to start poking through again- it makes you think that our bodies are stronger than they feel to be sometimes when you’re going through the worst of chemo.
Thanks again- I’ll probably be asking you questions about ypur radiotherapy when it starts too- hope you don’t mind!
Love Jane

Hi Jane, did your cct tell you you get a stronger dose of the epirubicin on the trial than if you are on standard treatment. Mine did as I started the second round of Capecitabine. No wonder I felt so grotty on the Epi.

Margaret

Hi, Margaret,
No, I wasn’t told that, nor do I remember reading it in any of the literature (tons of it) which I was given. Were you told why- I guess if so, it must be to see how well a larger dose works and is tolerated, but I can’t see any mention of that in the literature. Thanks- I’ll pester my onc with that one as well (she must be beginning to dread my appointments!)
Jane

No, there was nothing in my liturature about it either.
It just followed a comment that the person who was on the same arm of the trial had said how much better she felt on the Capecitabine and I replyed I knew how much better I was on Capecitabine. I had been dreadful on the last Epi. The steroids stopped my diabetic medication working and then after another two days the side effects of the Epi hit. I could hardly get out of bed for another 7 days and my blood sugars went sky high. My brain was so confused I even forgot to do a test for my blood sugar level. It was only when I realised I had lost 5 kilos and I had thrush I knew it was the diabetes that was causing problems as well.
I guess we decide to go on the TACT2 but I didnt think to ask that sort of question. I just accepted I had to be treated and got on with it.