Hi Dawn and Val, Thanks for you help I’ve just taken the first 4 tablets and hope I don’t begin to feel sick. I’ve had Oatibix for breakfast Val and wonder if I will feel the same about it when I’ve finished the treatment as you do about Weetabix. I’ve never been a breakfast person so I think the morning dose is going to be the hardest to get down.
Thanks for the tips about the hands and feet. I have already bought the cotton socks and gloves and will start creaming today.
I feel very apprehensive about all this but I know I’ll be fine its just something new going into my system and not being sure how my body will react.
Love Lesley xx
Hi Lesley you may be absolutely fine…I feel really well on this chemo…it really doesn’t feel like I’m on any treatment at all…some of us find this chemo really kind…xx.
Hi,
Just wondered if anyone has suffered from Heartburn whilst taking this chemo and if so have you taken anything to help. For the first week i’ve been ok but now I’m on day 10 of 2nd cycle and the heartburn comes on early evening and gets worse after i’ve taken the 2nd lot of tablets. I did experience it with the 1st cycle but really only on the last 2 days. Apart from feeling a little tired thats my only side effect at the moment so things aren’t too bad but would appreciate any suggestions.
Lesley x
Usually the docs prescribe ometrazole, they are really good, heartburn is a rotten thing.
reneexx
I take Omeprazole everyday too for heartburn. Just one in the morning. The come in different mg. Ask your Gp to prescribe some for you. it shouldn’t be a problem. Good luck with your ongoing treatment. Love Val
I’ve been on Capecitabine for nearly 3 years now and the oncologist recommended Omeprazol for the heartburn. I agree, it’s a perfect remedy and I never have heartburn unless I forget to take the tablet. My oncologist also prescribes me Pyridoxine for the hand/foot problem and it really helps.
I’m one of the lucky ones who is able to live almost a normal life with Capecitabine.Good luck to anyone just embarking on it.
Love Jackiexxx
Hi
jackie you say you lead an almost normal life do you work still.
mel
Hi Jackie
You say you have been on this drug for 3 years. I am just starting my 5th Cycle 1500 mg twice daily. Apart from my sore fingers I feel really good and have got my life back again. I had many lymph nodes affected and now have secondaries in my muscles around my shoulder and chest wall. The fluid on my chest has almost gone completely. I am frightened that if I stop this drug that the tumours will grow again. Can I just ask if you ever have a break from taking Capecitabine and if you do how long break do you have. What strength are you taking? I originally started on 1800 mg twice daily but it has been reduced twice since then due to my hands and splitting finger tips.Do you notice that your hair is thinning at all? Mine just seems to have stopped growing!! Sorry to ask so many questions but would really appreciate your comments. I am due to have a scan after the 6th cycle then my oncologist will review the situation. It scares me a little that my whole quality of life is based on me taking this drug, It really is a wonder drug as far as I am concerned. I have had FEC and Taxatol in the past but Capecitabine has been the most efective for me. Love Maddie x
Hi Mel and Maddie,It does seem to be a drug that you either tolerate brilliantly or you can’t take it at all.I’m one of the many lucky ones. After my original diagnosis in 2001 a small tumour was found in my liver in the summer of 2006. I had Taxotere (yuk!)and then in March 2007 I was put on Capecitabine.Around that time I made the decision to leave work as I didn’t have much hope for the future, we could afford it, and I wanted to be able to spend more time with my husband. He repaid me by going off with another woman a year later, but that’s another story.
I started on 4000 mg a day but my onc said I could reduce it to 3600 a few months ago to help with the hand/foot problem. It hasn’t stopped it being effective, as my tumour remains stable.I do get sore feet, especially by day 14, but then I have 2 weeks off (that’s another thing, I’m now on a 4-week cycle)and they heal up. The Pyridoxine (3 tablets a day) really help. My hands are often sore but I’m just so grateful to be alive I can live with that. They’re certainly very bad at the moment, but they’ve been like that since we had this terrible cold weather.My hair is generally in the best condition it’s been for years, apart from going limp and lifeless since the weather got so cold. Normal winters don’t affect my hands and hair at all, but this one is exception !
I do hope Capecitabine treats you as well as it has me and many others.
love Jackiexxx
Hi Mel
I noticed you were asking about working whilst on capecitabine. I was on it for nearly a year (worked very well initially but then unfortunately my liver tumours started to grow back). I did find the capecitabine very do-able and indeed continued to work throughout (for the NHS in a fairly busy clinical role with preschool children). Got tired at times but nothing I couldn’t cope with. So like Jackie has said, I was able to lead a pretty normal life.
All the best Kay
Hi, Just an update on the heartburn/indigestion problem. I spoke to the Sister at the Oncology unit yesterday with regards to getting the Omaprazole but when I mentioned I had some Lanzoprazole that I take when taking anti inflammatory tablets she said to take 30mg aday of those and having taken them for just 2 days there is such a difference. I shall ask for the Omaprazole when I see the Onc on the 22nd but feel much better now.
I haven’t been told yet when to expect a scan to see if the Capecitabine is working, how many cycles is it usually?
Thanks Lesley xx
Hi Lesley, I presume the timing of the scans varies for each case. In my case I have a ct scan every 4 months.I’m sure if you ask next time they’ll be able to tell you.
love Jackiexxx
Hi Jackie, Thanks for that. I am sure you are right. I have an appointment next Friday so will ask then. I feel absolutely kn…ed at the moment having just finished this 2nd cycle so am looking forward to a rise in my energy levels this week.
Love Lesley xx
Hi, I have arthritis of knees and hips and find when I am taking the tablets 2000mg twice a day I am absolutley crippled by the 10th day of the cycle but it improves greatly after I have finished the cycle (back to the pain I have normally) does anyone else experience this?
Lesley x
Hi, I am now on my fourth dose of Capecitabine and am feeling low. I had a blood transfusion before starting the first dose, and needed another after the second dose. I am now feeling very dizzy again and know this is the sign that my red blood cells are probably low again. I feel very frustrated as there is nothing I can do about the blood issue, although I can treat the other symptoms, ie hands and feet, diarrhoea, constipation, and acid indigestion that I get. I’m on a lower dose, 1300mg twice a day, and my onc said he wants to increase it to 1500 so that the toxicity levels don’t increase. I’m worried that he’ll take me off this chemo and I don’t know what other treatment options there are, since all the other chemos I have had in past years have all been much harsher and difficult to cope with. Have any of you had problems with your red blood cells on this drug?
Thanks for your help, Claire
Hi Claire,
I have just finished my 3rd cycle and as yet have not had any problems with my blood count. My problems are excessive joint pain, indigestion, which I have now got under control and tender hands and feet. Sorry I can’t be of any help but hopefully someone else will come along with some advice. Have you had a scan yet to see if the treatment is working. I haven’t and my secs are in Liver, Lungs and Lymph with a small amount in bones.
Lesley x
Hi Lesley
Thanks for your quick reply. I have multiple widespread tumours in the bones (spine and ribs) and in lymph system. Haven’t had scan as yet. I take Bondronat for the bones. I was first diagnosed with primary in 1996, then in lymph system in 2006, and secs in bones 2008.
Claire x
Hi Claire, You too had 10 years between your original diagnosis and secondaries. My original diagnosis was Feb 1998 I had lumpectomy with 6 months chemo and 5 weeks radiotheraphy. I had 10 years with no problems and then in 2008 my secondary diagnosis which was a huge shock. I too have a bone infusion every 3 months. I have found these forums a lifeline and I hope someone comes along soon to advise with your blood count worries.
Lesley x
Bumping it up for Claire xx
Hi Everyone, just wanted to say thanks for this thread and all your helpful posts. Just started on this one after 14 months of Tax / Gem, have been extremely lucky so far re side effects, ie none other than more tired than usual, can only hope it continues!!
I am only 7 days in, but haven’t seen or felt any difference thus far, as both supraclavicular and mediastinal nodes are affected, I can see and feel any change. I know I know, I am being over hopeful, but did anyone get a result quickly or did it take a few cycles?
Thanks everyone
Nikki