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Capcetibine - how do you take yours?

14 REPLIES 14
belinda
Member

Re: Capcetibine - how do you take yours?

Hi snoogle, I lost my Mum very suddenly from ovarian cancer 2 years ago. She was only diagnosed a few days before she died. The day after she'd died I started Capecitabine..so just a little posting to say I'm thinking of you and I hope things are easier for you very soon..xx

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Re: Capcetibine - how do you take yours?

Hi Linda,

Yes s.e. are getting worse each cycle. I had my first visit to a local hospice yesterday and met with a clinical nurse specialist. From my demeanor she felt I was depressed and did an assessment. THe upshot is that she has spoken with my gp and I am just about to head up to the surgery to pick up a prescription for antidepressants. Not 100% convinced I will take them, but I am due to meet my oncologist on Tuesday so I may wait to speak to him first before starting them. I have diahorrea, nausea, sleepless nights (have zopiclone but feel like I have a hangover next day if I use them), extreme tiredness which the nurse stated was fatigue. I am also losing my large toenails again and hair is thinning, sore fingers, etc. Just lost my zest at the moment, but given I lost my mum less than three years ago to cancer, a very close aunt this year and my own diagnosis of secondaries last year and surgery this year, its all just getting on top of me. Think what I am trying to say is not sure if its the drugs or life in general, but I never felt this bad when I was on taxotare, carboplatin and herceptin last year.

I guess after reading this you are probably sorry that you asked.

Snoogle
x

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Re: Capcetibine - how do you take yours?

Hi

Thanks for your replies, I'm much more confident now about how to take it.

Glad to hear that you all seem to be having some success with this regime, especially Marif and Belinda. Congrats to Hayz, Smiley275 and Curlyc on your shrinkage.

CurlyC - thanks for the tip about water, I was just taking enough water to get them down so I will try to drink more (hate water though).

Snoogle - I see you are taking Lapatinib too, I have heard that this combo tends to make Cap SEs worse, do you have any? I have diarhheoa, bad skin, occasional nausea and occasional tiredness.

Good luck Scaryfox with your appointment today.

Best wishes
Linda

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Re: Capcetibine - how do you take yours?

Caz thats good news re improvement, long may it continue for you. I take mine with loads of water too, did make me laugh re the weetabix, upgrade to toast every now and then.

Scaryfox, yes I know what you mean about they feel different sometimes up and sometimes down, I was reliably informed by my onc that was due to lymphatic fluid. Sometimes I have a big lump and other days it goes down, sometimes the wee beasties seem to have almost shrunk to nothing and other times they feel quite big (not as big as they were intially though so thats good). It also makes a difference if you feel them when Im standing up to if Im sitting down. I could just be a freak of nature of course which would explain lots. Best wishes to all xx

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Re: Capcetibine - how do you take yours?

forgot to say even on the second cycle have an improvement in my liver mets! platelets are going up very slowly as well, (bone mets)
xxxx
Caz

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Re: Capcetibine - how do you take yours?

Hi
am only on my second cycle of this, i take mine after breakfast at 9.30 and try to keep to 12 hours but an hour either way is ok according to my onc, i have my evening one with 1 weetabix, can honestly say am getting fed up of weetabix!! so may move on to toast, also i was told to take tabs with lots of water.
hope this is a help
Caz
xxx

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Re: Capcetibine - how do you take yours?

Thats good news about the lumps shrinking Smiley! Hope you enjoy Florida too...

I have an appt tomorrow where the onc will have a feel of my neck lumps, bit nervous, not sure if they're shrinking, seem to vary from day to day, hour to hour! I'm just about to finish cycle 2, I take mine 11am & 11pm roughly... didn't know about the fruit thing though?

Do people take them with loads of water? I have a sore throat and not sure if its from the tabs.

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Re: Capcetibine - how do you take yours?

Hi Hayz

Yes my neck and collar was like the Himalayas at one point! I noticed a shrink into cycle 3, then they did an ultrasound which isnt the best way to see any changes I know, but I had an ultrasound at the beginning to try to measure them so we were just doing a little comparison. The report came back with 'moderate' shrinkage. Moderate is good enough for me, at least its in the right direction. I dont think they have got any smaller since then, they feel much the same, but if its holding it then thats wonderful. As I said they will put me through the CT scanner when we get back from Florida early July so that will give a more accurate picture. Hope all is going well with the Capecitabine for you, Ive noticed a few of your posts and have been thinking of you xx

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Re: Capcetibine - how do you take yours?

Wow....isn't it amazing the difference in the info from Hospital to Hospital?

After reading your posts I'll be a little less obsessive about taking my doses EXACTLY 12 hours apart! lol....would be nice to have an early night once in a while!

Debs....fantastic to hear that it's shrinking your neck lumps...that's what I'm hoping for. My neck is full of lumpy nodes...can't wait to see some results. When did you start to notice some shrinkage?

Hxx

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Re: Capcetibine - how do you take yours?

I take mine 30 minutes after breakfast and 30 minutes after evening meal and these don't happen the same time every day. I also take lapatinib which has to be 60 minutes after eating.

I have only been told to take capceitibine at least 8 hours apart but no more than 12 hours. I also take regular paracetamol. Thank goodness for the timer on my mobile phone!

Snoogle
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Re: Capcetibine - how do you take yours?

Hi -- I've been on capecitabine for over 6 years; when I first had it, the Patient Information leaflet that comes with the drug stated we must have it 12hours apart, but that's changed over the years, and the leaflet now just says to have your tablets within 30 minutes of breakfast & your evening meal. However, the pharmacy at the Christie Hospital, where I see my onc team and collect my capecitabine, still puts the 12-hour requirement on their label. I'm much less rigid about timings than I was -- take my 1000mg after breakfast and my other 1000mg after an evening meal or snack, whatever times these take place. During my first or second course all those years ago, I spoke to the chemo hot-line at Christie's about how specific about timings I needed to be with this drug, and they reassured me that some flexibility, e.g. taking your morning course late if you sleep in, or your evening dose earlier when having a meal out, wouldn't be a problem. Hope this helps, and hope capecitabine works as well for you as it has for me and for so many other "Xeloda Queens".
Marilyn x

belinda
Member

Re: Capcetibine - how do you take yours?

I usually allow at least ten hours and not more than 12 hours between doses. I always take it during or within 15 minutes of eating..sometimes the meal is a slice of toast so I add a banana or piece of fruit..so to me..it's then a meal and not a snack.
I do know grapefruit is not to be taken with Cap.
I think less than ten hours between doses can make you feel nauseas. A couple of times when I've done this in error I have felt a little ropey. x

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Re: Capcetibine - how do you take yours?

Hi Linda & Hayz

I take mine almost immediately after a meal and only about 8 or 9 hours apart as thats what they told me, although Hayz yours makes much more sense so I think I might start doing it that way. Ive often thought if I have it at 8am and then 5pm, its a long way round until 8am again! Also it says dont take with fruit juice and a friend told me thats because fruit juices can do something to DNA, I obviously wasnt listening properly or I would be able to relate it to you and I cant. Anyway I then asked Onc if that meant you couldnt have fruit as or with the meal, if you cant take it with fruit juice then I guessed you couldnt have fruit either. Onc didnt know the answer, so Ive taken to having my fruit midday. This is my 5th cycle and it does appear to be attacking the little beasties as neck lumps are significantly less than they were. Onc suggested a CT when we get back from hols in July just to be on safe side. Would be interested to hear how others take their doses. Debs x

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Re: Capcetibine - how do you take yours?

Hey Linda

I started Cabecitabine on Saturday & have been told that it must be taken within 30 minutes of eating. It must also be taken 12 hours apart...and no more than 2 hours late. Eg if you take it at 8am then forget & remember at 10pm...then it's too late..it's a forgotten dose.

I asked if taking it with a snack would suffice & my onc nurse said that would be ok.

I take mine at 9:30am & 9:30 pm & didn't fancy anything heavy to eat at that time of the evening, so I tend to have a wee cuppa tea & a slice of toast along with my 4 tablets 🐵

Hope this helps...good luck with the treatment!

Hxx

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Capcetibine - how do you take yours?

Hi

Can anyone please clarify this for me as I am a bit confused. On the printed pharmacy label stuck on to my packet of Capcetibine it says TAKE 30 MINUTES AFTER FOOD, however on the product information sheet inside the packet it says TAKE NO LATER THAN 30 MINUTES AFTER MEALS. Do you take your capcetabine as soon as you have finished your meal? Do you always take it with a main meal or would a snack such as a slice of toast be enough? The information sheet says to take morning and evening. I am sure I have read somewhere that there should be a certain amount of hours between each dose (I think it's 8), does anyone else know of this?

Thanks
Linda