Hello, budgie, I'm afraid I had terrible breathlessness on the Cap, and, doing some research, found that the age group I fall in (45-60-ish) is particularly prone to it as a side effect. Apparently, it's supposed to fall off after 6 months or so, but my Onc gave me a break from the Cap in order to recover. I am currently on an extended break, and am on Exemestane at least until I see Onc again on 20th Aug. I believe it is quite common to be given chemo breaks from the Cap, but that, as long as it is working, you can go back onto it. Please discuss this with your Onc, because, as Glo has said, it could be due to something else. It's always best to check. Good luck. Hugs, Barton.x
thank you for coming back to me. The info you have given me is really encouraging - thank you. The onc says its the only treatment available I guess because I have had FEC and Docetaxol in the past and I believe the hormone receptor may have changed?
I am seeing him again tomorrow - so I will question it with him again - thank you.
Thanks again and I wish you well XXXX
Hello, Budgie - sorry you have had to return to the forum!
I was on Cap for 7 cycles last year, and another 3 this year - with an 8 week break inbetween the two lots. I was allowed the break because a. Cap was working quite well for me, but mainly b. because I became progressively more breathless and tired as the cycles went on (not got lung mets). I was also just beginning to get a painful mouth, but not to the extent you seem to be suffering, so I'm fraid I can't help with advice for that. I had been on 4000mg per day. I had recovered quite a lot after the break, so went back on the Cap for another 3 cycles, but at a lower dose of 3600mg per day. The breathlessness and tiredness were beginning to reappear, so was given another break, which, as my response had been so good, has continued. I have now been off Cap for about 14 or 15 weeks (sorry, lost count!), and as my blood test results for my tumour markers were still ok on my last visit, my Onc has given me Exemestane (hormone therapy) tablets for 2 months, which gives me another few weeks (at least) off Cap - returning to Onc on 20th August to check results.
Sorry for rambling, but what I think I am trying to say is, speak to your Onc. They can reduce the dose if you are struggling. I did some internet research (yes, I know it's not generally a good idea!) and found a few medical reports saying that a lower dose can be just as effective, and that it's the continuous drip, drip onslaught of the Cap that does the trick. I understand your reluctance to reduce the dose, though. It all "messes with your head" as the Americans say! Speak to your Onc. - he/she will soon tell you if they think it a good/bad idea, or they might have some stronger mouth stuff.
Hope this helps. Vent on here if you need to!
Hugs and best wishes, Barton.x
Good morning all. I am a returner to BCC forums in that I was diagnosed with IBC 10 years ago - discharged 2 years ago only to discover a recent cough and breathlessness has resulted in mets in both lungs. Waiting for results on bones, but so far not showing in liver.
I have started cape and have just finished round two. After reading all your posts on here I have kitted myself out with udderly and so far my hands and feet are ok - I am permanently living in flip flops to keep them as cool as possible (onc told me to do that).
However, I have a very sensitive mouth. It feels like my tongue has been burnt with a hot drink and the roof of my mouth is really tender. I am using Difflam mouthwash as often as I can, which relieves it for a short time.
After round one my onc was going to increase my cape dose (currently on 3600 per day), but as my mouth was tender, he wouldn't increase and left it at the same. I am concerned he might reduce it tomorrow at my apt. This worries me as I am told that cape is the only treatment that is available for me and we are hoping that I can stay on it for the long term. I need to be around for a long time yet as I have two young children that I want to be here for.
Reading all your posts on here fills me with hope and I feel that if I can contribute to the forum in any way and help others, then it might be of some help to someone else.
I wish you all the best ladies (and gents). If anyone has any receommendations for my mouth (apart from keeping it quiet 🙂 ), I would be very grateful.
Hello Abi. I'm glad to hear you are doing OK so far. Good luck! May the se's be few or mild! Hugs, Barton.x
Hi, thanks again for responses. Been on it now 4 days and no side effects except dry eyes, bought optrex eye revive this morning (£15, how do they make a profit!?), will be asking at hospital for eye drops next time l'm there.
Hi.....I think we all use what we think best......I have been on capecitabine over 3 years.....I sometimes use underly cream during the day....sometimes use other creams which are a bit greasy but which are absorbed quickly....current favourite contains argan oil.....At night I use a cream with a high urea content which is much thicker...use flexitol heel balm on prescription from GP.
Also use memory foam sketchers trainers and Mbt type shoes. Also time additional weeks off medication around holidays when I know will be doing more walking.....good Luck!!
Hi, I'm sure this has been answered loads of times so sorry to be a pest but couldnt find a recent post. Best cream for hands and feet when on Cape? Due to start it in a couple of weeks after discovering that my current chemo isnt really working and want to get stocks in. I'm triple neg, anybody had good results?
Sorry Glo. Not suffered from that so I'm afraid I can't help. If it's worrying you, please ring your chemo team. Hope it gets better soon. Hugs. Barton.x
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