Hello again, Glo. I have had IV chemo (FEC-T in 2011 at my original, primary, diagnosis - had 3 yrs on Anastrozole before it stopped working and mets diagnosed), and I found that harder regarding aches, pain, and generally feeling like cr@p, and Cap is easier, but that still doesn't mean easy. After all, it is, still, a poison! Don't beat yourself up for feeling bad! Good luck with getting your dose lowered again. Hugs and best wishes, Barton.x
Oh, hello, Glo, and thank you for congratulations. I'm so sorry to hear you are having such a hard time on Cap. I'm afraid I can't answer your question as to how much of a dose reduction you can have and it still be effective, but I do know your Onc should be sensitive to your se's and your suffering. I have read that a dose reduction (presumably, though, there will be a limit on the reduction) is just as effective. I believe it is the constant drip, drip of the drugs attacking the cancer cells that does the trick. I myself have had a dose reduction. I did 7 cycles on 4000mg per day (I was told by my Onc at the time that that was quite a low dose - I think he was referring tactfully to my weight!), then had an 8 week break due to breathlessness and tiredness (supposed to be 6, but it started after the rest week of my 7th cycle and then I had to wait another week for the pills to be ready). When I went back on the pills early this year, I asked for the dose to be reduced to 3000mg, but was told that was too big a drop, so agreed to 3600mg per day. I managed that for 3 cycles, then, as my tumour markers had reduced to the 20's, and my stomach was looking like a war zone due to the Fragmin (blood thinning) injections, the Onc suggested I have another break so I could go on to Rivaroxaban tablets for a while. I'm so sorry that I have rambled on for so long. I hope at least some of this info will be useful! Please speak to your Oncology team and let them know what a tough time you are having. Best wishes, Barton.x
Helen, thank you so much. I wondered about posting, but I know how uplifted I feel and how excited I get for other peoples good news. I have celebrated with M&S chocolate truffle sauce and strawberries for dessert this evening (I don't drink because I don't like the smell even). I hope you have managed to get some relief from your pain, Helen. I am disgusted with the way you have been treated by all your medical "support" (hah!) personnel! Hugs and best wishes, Barton.x
Hello, Glo and Ann, how are you both doing now with the Cap? I do hope you are finding it a little easier these last few days. I hope you are both finding it not so hard eating enough to take the pills with. As others have said, please don't think you have to suffer in silence. Your Onc and team should listen to you and help with anti-sickness meds/rest periods/dose reductions. Hugs and good luck. Barton.x
Hello, lovely ladies. Now, I feel rather guilty sharing this news when there are so many ladies suffering pain and set-backs at the moment (Helen, Bev, Corinne, and others I know, but chemo brain has removed your names I'm afraid - so sorry!), but I also know how cheered I am when anyone else posts good news, so I will continue. I went to Onc appointment today, thinking it would be the end of my Cap rest period. However, I was told that as blood test results from 2weeks ago were still good (TM's in 20's still), and as the CT scan I had yesterday (no official Radiographer results yet but he had had a look) looked stable, I can have another 6 weeks rest! I am over the moon! I do have to have another blood test in 4 weeks, and have another Onc appointment in 6 weeks, but for now I am free of the peachy pills! Hugs and love to all, Barton.x
Hi Ann - Sorry you're having a rough time. I know what you mean about the thought of taking cape. I had a lot of fatigue and have had my cycle changed to one week on and one week off and it is just as effective (so the onc/pharmacist tells me). This has made things a lot easier - only got to force feed myself for 7 days at a time. Perhaps you could ask about this.
Ann, welcome, but sorry you have had to join us! And sorry you are feeling so rotten! Yes, I think you should take the tablets as close to 12 hours apart as possible (not always convenient, or possible, I know), but all the literature says you should. I am currently on a break from the Cap (probably coming to an end shortly - depending on the results of the CT scan I am having next Wednesday), but I do try to take them 12 hours apart. When on the tablets I take them at 6.30am and pm (as close as possible). I am lucky, I don't suffer from the nausea (the diarrhea, however, is a different story!), but when I first started on the Cap I was given anti-nausea tablets just in case. I have not, so far, needed them, thankfully. Did your Onc team give you anti-nausea tablets? If not, you should ask for them. I know what you mean about dreading taking them long term, however my Onc has so far let me have 2 breaks of about 7 weeks each. I could not have managed to do it without. I am dreading going back on the tablets. They are considered an easier (not easy!) chemo than IV chemos. Hope this may have helped a little. Hugs and best wishes, Barton.x
hello cap ladies.Just over a week in to my first cycle of cap. I feel constantly nauseous and cannot face food although I know I have to eat in order to take the meds.I feel miserable and the thought of continuing this for some time is awful.I look at the tablets and shudder. Well another 5 days and I get a break. I take my morning tabs about 9.0 - 9.30 after a forced slice of toast and then my evening ones at about 6.0pm. Just read a post that said they should be 10 - 12 hours apart. Do yoy think this may help. I feel so rotten. Ann
Cotton socks are useful but mine always fall off. Anyone tried clingfilm? Sounds a bit kinky but I have seen it suggested somewhere!
I use Udderly Smooth cream or Flexitol (both have a significant amount of urea (yum) to soften skin) and as an alternative to Vaseline I use Waitrose Baby Bottom Butter (tub version) which contains olive oil and camomile oil.
Hello, Liz. Sorry you are suffering this side-effect! The sore feet thing is a very well known se of Cap, and the standard treatment (advice from fellow sufferers) is to moiturise your feet as much as possible. It also helps if you can stay off them as much as possible, but, of course, this conflicts completely with everyday life! So almost impossible, really. Is it possible to moisturise in the evening, and then put your feet up for a while before going to bed? Also swollen - hmmm. I think it might be an idea to mention this to your Onc when you next see him/her. I didn't suffer from swollen feet, but got the hot, "walking on a mix of broken glass and hot coals" feeling - yes. I also get an itchy rash, but I get mine on my hands. My GP gave me some stuff to help.
Sorry if this is a negative post, Liz.
Hello, Glo, sorry you have had to join us. I haven't suffered from the bloating/pain that you have, but I believe it is a known se of Cap. Not much consolation, I'm sure -sorry about that. I do, however, suffer from indigestion, but I have never had much trouble getting rid of it (if you know what I mean!). Hope the pain and bloating subsides soon. Hugs, Barton.x
Hello Cap gang, welcome to the newbies, but sorry you had to join us. I had an Onc appointment today, and have been given another 6 week break. I was (I have to admit) moaning about having to do the Fragmin injections. The Onc (a lovely lady helping out my regular Onc as his Registrar was off sick) was very sympathetic, and, as my tumour markers have gone down again (from 30 to 22), they decided I could have a break from the Cap and so go onto another form of blood thinner. The Onc is going to write to my GP, so until she gets that letter, I'm still on the Fragmin. Hopefully, soon though, my poor stomach will get a rest from the bruises and lumps! Anyway, hope everyone else is managing ok at the moment. Hugs to all, Barton.x
Hi Macie. I have been on capecitabine for just over 3years. I have never had a long break off it....But have had up to a cycle off....(4weeks if you include the normal week off. Currently I am taking it for 2cycles and then having an extra week off......and after 3 lots of cycles like this taking 2 or3 weeks off....mainly to fit in with hols etc...usually my markers fall during the time I'm off...... My hands never return completely to normal but get much better and my feet recover as well....good luck with whatever you decide.xx
Hello Macie, so sorry you are having problems. I am in awe of you doing Cap for a year without a break! I could not have done more than the 7 cycles I did before the break - I was in an awful state! Dreadful breatlessness (I couldn't get to the back of a Tesco Metro in town without stopping 3 times for a rest, and burst into tears in said Tescos (so embarrassing!), and the same day burst into tears in the dentists. My Onc suggested the break after I told him about this, but I had been going to ask him anyway (although would never have suggested 6 weeks on my own). I had read a lot on the Internet that said breaks (and dose reductions) are fine, that it is the drip, drip feed of the tablets that does the good. It took several weeks, in fact, before I felt the benefit of the break,but I had no ill effects from the break. Whether I was just lucky or the Cap continued to do it's work during the break, I don't know. Please ask your Onc for a break. He will surely tell you if he thinks it inappropriate for you, but I am more than sure that you deserve one! Hugs, Barton.x. Ps please feel free to ask if you have any further questions.
Hello Liz, congratulations on finishing your first cycle - it's always daunting taking that first lot of tablets, isn't it? Sorry about the bloating feeling - I haven't suffered from that (fortunately) so can't offer any advice I'm afraid. The only thing I can think of is, are you drinking enough water with the tablets (or too much!)? Sorry you are having to put up with that, though. Hugs, Barton.x
Hello Liz, sorry you have had to join us, but glad to have you with us (if you can make sense of that!). Hope Cap works well and for a long time for you. Hugs to you, and all the rest ofvthe Cap gang. Barton.x
Hello there desi2
just saw your thread on vomiting after taking Cap. i was on it for a short while (3 cycles) didin't work for me BUT I was also vomiting and the Onc said to dissolve the cap in warm water - check with your doctor but i am sure that is what you can do if yo keep on throwing up