thanks Marilyn, Belinda and Kelley for your responses, even though the club itself is rubbish the members of it are LOVELY!
I am hoping to have good reactions to this chemo, this is my third go at it, had Taxol last time and now have little feeling in fingertips so thats why my lovely Onc has gone with this one,I did suffer from low platelets went down to 2 at one point! my platelets are dropping now so am keen to get started on treatment, but its like a cosmic joke have booked to go away with friends to a lovely caravan in the lakes and low and behold i start my treatment the same week! you couldnt plan it!
Hi Caroline – I’ve never had any problems going on hols with capecitabine, and as it’s your first cycle, you probably won’t even notice any side effects. Hope you get to the lakes!
Marilyn x
I hope you don’t mind me gatecrashing your thread!
I was diagnosed with a regional reccurance in the lymph nodes in my neck 3 weeks after my chemo finished…2 days into rads! I now have another lump on the other side so it looks like my cancer is on the move again! I have a CT scan next Friday to confirm where we stand with things…not sure when I’ll get my results tho as my onc is stuck in South Africa!
I’ve been following this thread closely since my recurrance as my Onc has said that Capecitabine would be the next step (I’m triple negative) so I wanted a heads up on what to expect. I have to say that your posts have made my situation seem less scary. You are all so upbeat & positive about this treatment & the results you have been having are fantastic & I just wanted to leave a wee post just to say Thanks! I’m reassured that should I need to go back down the chemo route so soon it is possible to carry on with life. It’s wonderful to read about ladies doing so well & for so long…I just hope that I can have the same success!
Hi Hayz, good luck with your CT scan, I hope all will be well for you…but yes like many other Capec patients my 2 years, so far, with this chemo has given me a great quality of life. I’m so hoping I can get a wee while longer with these tablets! Apart from the obligatory one week off in my 3 weekly cycle I’ve been on the highest dose since 2008…I’m now coming to the end of yet another cycle, I’m day 12 and have spent most of today shopping and pushing a double buggy round…my energy levels have held up so well throughout the last 2 years.
Good Luck…and Love…xx
thanks to all, am really looking forward to the weekend, lots of laughter and messing around, couple of walks and some nice meals out, but this is prob gonna sound mental, but are you allowed to have alittle sneaky glass of vino on this treatment? i hope so!! i dont drink nearly as much as i used to but i enjoy a glass of vino now and again!
thanks
Caz xx
Hi, Re Capcitabine I seem to be doing ok and have just finished my 7th cycle, have a few side effects all seem to do with my feet ,sore toes and feet and a little swelling of feet but this last week I have begun to feel so tired and wonder if anyone on it longtime has felt the same. It would probably help if I gave in a litte but am trying not to let this b,r beat me. My platelet count was low on my last visit to Onc but he said it would be ok to continue this month so I wonder if that could be the reason.
Lesley x
Hi Lesley
I am on my 8th cycle of Capecitabine and am also feeling very tired. It may just be that I’ve been overdoing it lately, I don’t know, but I am considering dropping a day at work as I know my Onc wants me to be on this regime for as long as possible and if this is going to be long term I feel a bit overwhelmed, as I find it hard being a lone parent and working. My Onc was pleased with my scan result but as this chemo is long term, we have to be able to cope with it. Maybe tiredness is normal, I don’t know, but it’s hard to cope with. Does anyone else on this chemo get very tired, is it normal?
Hi,
Anyone with swollen feet and legs whilst on Capcitabine. Mine have got worse this last cycle.Seeing my Onc on Friday but want to have something to say as he seems to only talk about the main side effecte i.e. sickness, upset tummy, and dry feet, he wasn’t interessted in my yucky toe nails and said it was n’t anything to do with the chemo but it was as so many other ladies had the same thing.Any comments appreciated.
Lesley x
Been on capecitabine for three cycles now. Although only two full cycles. I started taking it at the same time as lapatinib and had a severe reaction. A first it was thought it was the capecitabine so I had to stop it, but it turned out to be the lapatinib. I am now back on the lapatinib with antihistamine’s which I am gradually reducing. My onc is increasing the dosage of capecitabine next cycle from 1800, but he hasn’t confirmed how much to, will find out when the drugs arrive next Tuesday. I have many side effects at the moment but as have three types of therapy at the moment not sure which is causing it, so he is going to prescribe vitamin b6 to help cope with hand and nail problems. Does anyone else take this supplement?
Hi, Snoogle I am taking the vitamin B6 for the hand and feet problem but its only this last cycle that my feet and lower legs have become swollen. I am on 2000 twice a day so maybe my dose needs reducing.
Lesley x
Claire – tiredness: I’m pretty bouncy in the mornings, OK in the afternoons and a bit like a zombie in the evenings. Of course, as others have said, it might be something else in “the treatment cocktail” (Bondronat, Aromasin, ibuprofen, too much chocolate, etc), or being an old biddy now might also contribute to tiredness.
Lesley – swollen feet & legs: yes, after over six years on capecitabine, my feet & legs are starting to struggle with neuropothy (mainly numbness, rather than pain) and are sometimes a bit swollen. I’m on half the dose that you’re on, so you could possibly ask your onc about a dose reduction, even for just a couple of cycles, to see if that helps.
Snoogle – I’ve been taking Vit B6 for years, but not sure if it does anything (!) for my hands or feet. Don’t feel like testing it by stopping, though.
Hi,
Anyone with swollen feet and legs whilst on Capcitabine. Mine have got worse this last cycle.Seeing my Onc on Friday but want to have something to say as he seems to only talk about the main side effecte i.e. sickness, upset tummy, and dry feet, he wasn’t interessted in my yucky toe nails and said it was n’t anything to do with the chemo but it was as so many other ladies had the same thing.Any comments appreciated.
Lesley x
Hi everyone
I have slightly swollen feet, Lesley, but legs are ok. I have to wear a size bigger shoes, and wide fitting. My fingers are also bigger than they were and my rings don’t fit anymore. Perhaps you need a reduction in your dose. It’s worth a try as it may help you. Snoogle, I also take B6, but was overwhelmed by the amount of tablets I was taking every day for all the side effects, so a few weeks ago I dropped all tablets but the Bondronat and Capecitabine. I only now take any for side effects (including B6) if I have particularly sore hands/feet. My Onc said I only needed to take the B6, etc, if my hands and feet were particularly bad, and I feel relieved not to be taking so many tablets every day. I have felt better this dose (dose 8)apart from the tiredness, but maybe I’ve been overdoing it. I’ll see what the Onc says on Thursday when I see him.
Love, Claire
Claire, Know where you are coming from with the tablets, when I am on my two week cycle of capecitabine I am taking over 30 tablets a day. Thank goodness for pill holders and my obsession with lists.
Hope so as I just have done! Last Saturday and it seems fine, my hair has thickened up since I stopped taking aromasin and started on the Capecetabine.
Dear Janet, I asked about this when I was first prescribed the drug (we musn’t lose our looks as well!) and they said only vegetable dyes. However I ignored the advice and had some highlights done! Seems fine but would be unsure about having a full head tint without an allergy test first. Hope this helps!
Hi there, I have just started taking this drug (about a week now) - I am wondering about average times it takes to start working on tumours (if it’s going to!), I have a neck lump that is freaking me out as I’m convinced it’s still getting bigger.
Have been told it can take a few cycles, just interested in others experiences…