hello everyone. I don’t post often but I read everyone eleses everyday. I always intend to reply but them forget who said what, chemo has fried my brain. I get great comfort from reading all you postings and long may they continue. My question to you is this. Taxol has failed for me and I have just started capercitabine. Had anyone got any tips. So far I have dreadful stomach pain and wind. I have treid ginger tea and sage tea which have not worked too well. Waht can I do about foot/hand syndrome? Should I start using moisturisers, someone suggested Vit B6. What has worked for you? All suggestions would be appreciated. Keep on posting
Do any of you live in North East/North Yorks. I envied you your day out and would like to organise one up here
Best wishes
Mills
Best wishes to you all
Hi Mills – Good to hear from you, but sorry that Taxol has stopped working for you. I’ve been on capecitabine for over four years, since my dx with bone & liver mets in 2003. I think most oncs start us on very high doses of this drug – it’s meant to relate to the size of your skin surface – with hopes that it has a strong impact on our mets. This, of course, leads to the side effects you mention: digestive problems & hand/foot syndrome. In my first two years taking this drug, I had several “chemo-breaks” and two dose reductions because of the side effects – since then, I’ve been on 1000mg x twice a day, two weeks on and one week off, half the dose I started on initially. This low dose has certainly reduced my symptoms to almost nothing, but of course there’s a risk that it’s not working as effectively – I had some progression in November 2005, but a change of aromatase inhibitor (from Arimidex to Aromasin) worked for me then, and I’ve spent most of my four years with a “stable” diagnosis.
Capecitabine really did a good job of shrinking my liver mets, and has kept these relatively stable for a long time – perhaps speak to your Mac nurse, onc team or hospice doctor/nurse about something for your digestive side effects. For the hand/foot syndrome, you might want to get a variety of creams, including the wonderful Udderly Smooth udder cream (no joke – it’s great; available in the UK on the net), perhaps some aloe vera cream, and I found creams with urea (available at chemists) very good as well.
A lot of us posting to the BCC Forum have had experience of capecitabine – I think you can do a search to see how we’ve coped with it. Most of us have found it easier than IV chemo – no needles or frequent/lengthy hospital visits, little if any hair loss – and I hope it works wonderfully well for you!
Regards, Marilyn xx
Hi
I’m passing on the tips that I found in Amoena magazine (they make mastectomy bras etc.). I’m on my last dose of Capecitabine which had to be stopped for a while and then reduced because I had such a bad reaction in my hands and feet. I’ve been using hand and foot creams with urea in it, which is supposed to keep your hands supple and soft. Two makes to try are CCS foot cream and Flexitol - which make a hand and foot cream. You can get both from Boots. I mentioned B6 to my breast care nurse and she poo-poo’d it, but I’m taking it now. I’ve also read that you should avoid soaking your feet in water - a quick shower is better than a bath - and avoid putting pressure on your hands and feet as much as possible. Easier said than done!
If you look at the Xeloda website, they have information and photos, so you can compare your hands and feet to the ones they show and contact the hospital if they get too bad.
Hope this helps. Apart from sore hands and feet, and days when I’ve felt very tired, I’ve been quite happy on this medication.
Best of luck, Mx
Hi Mills
I’ve been on capecitabine for 17 months but was started off on a very low dose as my liver was severely compromised but now take 3 big tablets and one small one twice a day.
Never had any upset stomachs but my hands and feet get dry with the appearance of cracking (although they haven’t done so yet) plus my cuticles have gone and I sometimes get my skin ‘shreading’ round my cuticles. I’ve found Flexitol the best for me - it comes as heel balm, hand cream and also nail & cuticle cream and has really kept my hands soft.
Apart from this I’ve had no other reactions - no thinning of the hair (mind you I have got thick hair so probably wouldn’t notice!) so of all the chemos I’ve been on this one has been the best so far.
Pinkdove