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Xeloda / Capecitabine - Your Top Tips, please?

Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

The Acid problem is a better today. I took the Cap an hour earlier last night, and made sure I slept semi-propped up, so wasn't disturbed with chronic heartburn. I've even managed a cup of tea this morning, but to be on the safe side had porridge for breakfast (as toast requires butter, and butter equals heartburn). Am seeing the Prof on the 8th October, and will ask if there is something they can give me.
I guess Cap has to be given orally, because it is absorbed in the Gut. Wish it could be done by infusion though.

herbgarden
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Just something to think about Lemongrove.......It couldn't be that capecitabine has knocked your immunity a little and you have oesophageal thrush?....might be worth a discussion with BCN. Pamx

laura64
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Lesley dont suffer ring and ask I've heart burn now and then but the tabs y on work well on me it might settle down why don't u give it a try they can reduce dose I'm sure u don't want iv I know I don't tc laura

Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Spoke to soon about no SE's. Acid reflux has been building up and I now feel like I've been drinking battery acid. Can't even drink a cup of tea without pain, so am just drinking milk. As a result I'm feeling quite sick. Am taking Lansoprazole gastic inhibiter in the morning and then Omeprazole in the evening (although I'm only supposed to take one per day). Didn't sleep properly last night because of the reflux (had to prop myself up), and so have been sleepy all day. Not feeling great, and not sure I can hack oral chemo (they want me to have at least three cycles). Is there something I can do, or is there an alternative infused chemo that won't take my hair?

gail5
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Izmark, yes I remember you. I'm skipping the Monday meetings at WGH just now too as timing is a bit awkward for eating evening meal and taking the pills. Might go if it coincides with the week off.
I was told when on FEC-T to avoid the sun but not sure if it's an issue with Cap.

izmark
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

No Val, not this time. I felt quite wobbly after the secondary support day, so thought I would give it a break for the time being.
Isobel

scottishlass
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Izmark, Are you going to the meeting on Monday evening at the WGH? Val ( I am going)

Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Janice how's it going? Did you ever ask for a second opinion about whether a MX would be beneficial for you? The more I think about it, the more I think you should ask. Perhaps others will correct me, but even if you had a recurrence in you lymph nodes, that still doesn't constitute secondary cancer. I was under the impression that when cancer is in the breast and lymph node it is regarded as stage 3. It's only when the lymph node cannot contain it anymore, and it goes beyond the lymph node into the rest of the body that it becomes stage 4. If that is the case it, then I would have thought an MX would be very worthwhile. In anycase, even if you are stage 4, my Prof say's there is overwhelming evidence that removal of the primary extends survival.

Iamok your news is wonderful and very encouraging.

Izmark, the manufacturers claim it is safe to handle (but maybe they need to update their guide). But I was under the impression that it requires an enzyme in the Liver to activate it. My instinct, is like yours, that the sore hands and feet, are SE's from the drugs systemic action (but I have only been on it for a week, so who am I to judge).

izmark
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Gail, that's really good news. BTW, do you remember me? We met at the secondary support day.
Just going back to handling or not these tablets - I was told to try and avoid it, which I have mostly, but both my hands and feet are sore and peeling and I can assure you I have not been handling them with my feet! I think it has a systemic effect, which can cause this hands and feet thing. I've just come to end of my third cycle and I've also developed a rash, where some of my body (upper chest and left arm) have been exposed to the sun. So lots of cream being applied everywhere! Has anyone else has this sun sensitive thing?
Isobel

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thats fantastic news Gail , brilliant xxxxxx

gail5
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Good news from onc today. CT scans are clear and she thinks skin mets might be slightly improved. Will have to get you to send me the good vibes for every appt from now on Pinkylou.

gail5
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Ann it might just be a coincidence but would be interesting to know if the peeling clears up when you stop handling the pills.

Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Ann, I was just repeating what the manufacturer say's - but their info might be wrong.
Just a thought, but if people are experiencing problems when handling Xeloda, they should report it to the MRHA, under the yellow card scheme (see link below. If enough people report a problem, this Governement body can force the manufacturer to investigate and change their advice.
http://www.mhra.gov.uk/Safetyinformation/Reportingsafetyproblems/Reportingsuspectedadversedrugreacti...

Ann_04
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Glad you had a good day at Goodwood and that you are having minimal SEs.

It seems strange that some of us are finding our fingers are peeling where the tablets have been handled. I shall continue using a spoon.

Ann

Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Well it's 5 days since I started Cap, and no SE's yet. We even had our day at Goodwood races today, and didn't even feel tired - so I didn't spoil it for everyone as feared. The only thing is that I forgot to take my Lansoprazole at lunchtime and began to get a bit of acid reflux, but have taken it this evening and seem to be OK now.
Also with regard to handling Cap. I have been reading the green guide to taking Xeloda, which the hospital gave me, and has been produced by Roche (who I believe manufacture Cap), and it says that unlike other oral chemotherapy drugs, Xeloda can be handled safely - so no need to wear gloves, or put it into a cup. The only thing is apparently you should only take it with water, as orange juice can interfere with it (the Macmillan guide to taking Cap states that you can dissolve it in orange which would appear to be incorrect advice).

chipper
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Is it ok to take ibuprofen for headache and chest pain ?

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

good luck Friday Gail , I am sending you good vibes x

gail5
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Pinkylou - sorry I haven't had any pain that wasn't already there. Haven't heard of it being a common SE but could be worth checking with your unit in case.
Val - hope the pills continue to work for you. It gives me hope to hear of ladies who've been on it for so long.
Had CT scans today and see onc on Friday for results. Got lucky as they found a good vein first time. Usually have to play 'hunt the vein' with them after having been on FEC.

scottishlass
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I will be collecting my Peachy pills tomorrow, if my bloods from today are okay. I had stopped them for 2 months because of my recent hip repleacement.
It think once you are on the correct dose the side effects are not too bad with Capecitabine. But the very first cycles can determine whether a reduction is necessary or not. Don't try to be a martyr girls if your feet get very sore. Mine did when I was first on this chemo and it was like walking on broken glass, very painful. But at that time I did not know the dose coud be reduced AND the chemo would still work. Not sure how long ago that would be ....5 or 6 years ago perhaps.
I am stil on steroids to help my appetite and mood and am down to one tabet a day now. Not sure what will happen on Friday when I ran out of them as my Oncologist gave me a 2 week supply only. May ask the ward tomorrow when I get my infusion of Zolidronate.
I have been keeping busy over the past few days and was walking with my crutches on the beach yesterday, but today the weather has turned cold and windy so we went up to the bird Sanctuary at Vane Farm near Kinross to buy new birdfeedrs and replenish bird food. OH has filled them all so the birds whould have a field day tomorrow...pun.....oh...
Hope the Capecitabine works for you all as well as it has for me. My Tms were 3000 before the last 8 cycles and one of them went down to 179. But with being off the peachy pills for 2 months they are approaching 2000. Lets hope it nips the wee buggers in the bud again and improves things for me. Take Care Val.

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Has anyone had lower back pain on xeloda ? X

gail5
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Lemongrove - as Herbgarden says, everyone seems to be different on this one. I had acid reflux pretty quickly but looks like your meds are sorted out in advance so you mght be OK with that. Feel a bit tired sometimes but it passes fairly quickly usually and hands are just starting to become more of a problem on cycle 5.
Pam - I struggle to get up too, but not sure if it's more to do with the student flats across the road. Since the smoking ban they hang about outside smoking late at night and can keep us awake at night.
Nina, Lemongrove and Dulcie, hope you continue to have few issues with SEs.
Laura - Good to hear you're still doing so well on cycle 12. Hope I can last that long. My unit has someone on over 60 cycles which would be great.

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I am sooo envious Lemongrove ..it's so lovely to have your precious granddaughter with you ..mine live across the world ( 2 boys).....i have to 'close' off to that..my older boy loved to sleep in my bed..last time they came here..he talked all night..on one occasion..he was so slim when i hugged him i thought he would break..!!
Dulcie xxxx
Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for the replies to my question - very encouraging that the SE's seem to be fairly mild for most.
Day 2 and no SE's yet, so hopefully I will be OK and not spoil our day at Goodwood next Wednesday.
As I'm writing this post, my little 7 month old grandaughter is laying fast asleep in bed next to me clutching her teddy - so cute. My daughter bought her a sit in walkie thing, and she likes us to push it up and down the hall (preferably at break neck speed). We've been doing that all morning - hence why she is now so tired, and I'm laying on the bed!

laura64
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all Lesley I'm on cycle 12 and had v little se upset belly mainly red and dry feet I'm on 4big in morn 3 big 2 small in eve u might not get a lot of se sum don't its norm v well tolerated I told my onc its like I'm not on chemo god help the day I have to stopp I hope the se are gd to u don't sit around waiting for them to happen get out there and enjoy y self hi to all newbies welcome to club I don't post often but always here if any one wants a chat tc Laura xx

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I started on Wednesday Lemongrove and sitting here wondering when the se's are going to start..and what they will be! I have had to take laxatives..but nothing at all! I did sleep last night with my arms 'wrapped' around a plastic bucket! What a sight...
I hope you get to have a wonderful day out..and good weather too!
Hi everyone x
Dulcie xxxx
pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

hi lemon grove I love good wood, I understand everyone is different , I am on my third cycle , I have had a big of sickness and acid reflux , hands were quite sore not feet , I put aloe Vera on them , and moisturiser , xx

broomsticklady
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi LG - I'm just ahead of you - I started thurs evening and have just taken my 4th dose - I'm not a little lady so I have 5 big tabs each time! So far so good - a slight looseness, and some flatulence afer dose 1 but touch wood, I can cope with that! Creaming like you on Udderley - bet the cows never thought they'd be joined by cancerous ladies!!
Keep updating as you go!
Nina

herbgarden
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lemongrove welcome to the capecitabine club. I am currently in the week free period of cycle 10. I think everyones experience of side effects is different. My experience is that i have had little in the way of side effects and have never needed to use the anti emetic or the loperimide. like you i ordered the udderly cream(just ordered the third one yesterday BCC should seek commission!) and started to use it but early on had very few probs with feet or hands. Over the last 2 or 3 cycles my feet have been very dry and durng the second week of the cycle have hurt to walk on. for a few days I have to wear different shoes each day cos they seem very sensitive to rubbing and each shoe touches my foot ina slightly different place. I have been alternating the udderly with flexitol heel balm which doesn't feel so nice but has higher amounts of urea and i think gives added moisturisation. I have also had a few days at the endof 2 weeks taking tabs where i feel more tired....manifested mainly as a greater struggle in getting up. I have been taking 2000mg twice daily but i am considerably larger than you and prof has been threatening to reduce it over the last few cycles but one thing and another, (at one point it looked as if markers were beginning to rise but then fell again and then he wasn't in clinic!) has meant I have remained at higher dose. My markers haven't really reduced on it but have stayed between 50-60...so I guess stability is the next best thing!
With a bit of luck you wont be having any side effects at all next week. Pamx

Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning everybody. Just to say I have joined the cap club. I started my first cycle of Cap at 8am this morning. I took three big peachy pills and one small one (will repeat again at 8pm tonight). The Sister in the chemo unit explained things to me, Lanzaprozole to prevent acid reflux, anti sickness drugs to help nausea, and moisturiser for my feet. They also gave me emergency contacts, so everything has been well organised. Apparently I will have at least three cycles initially ( am also having Herceptin and Zometa), and they will then review things.
Last night I went onto Amazon and ordered some of the Utterly moisturiser with Urea in it (as others have recommended it), together with pure silk socks and gloves, as I thought I could put these over the moisturiser, and they would be nice and light to wear.
Question: How long on average does it take before the SE's kick in? It's my wedding anniversary next week, and my hubby has organised a special champagne day at Goodwood races for the whole family. Bit worried that the Cap will be causing SE's, and I will spoil things if feeling rough.

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Gail please let me know how you get on with your scans! I do hope it is working for you..and you can stay on it ..if it suits you!
Thing of you also pinkylou ..
Dulcie xxxx
gail5
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Dulcie - I don't think onc will take me off Capecitabine if she thinks it's working. It's just that my initial list of appts only has 6 cycles on it. I started at the end of June and I'm near the end of cycle 4. Waiting for appts is the pits, but hope the chemo works for you in the meantime.

Pinkylou - sorry you also seem to be having a time of it. Hope your appts go well too.

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Please PM me pinkylou! I would go and see your GP straight away and get an URGENT referral to the Marsden..it will depend on your PCT if they allow you the funding..fingers x because mine did!
Dulcie xxxx
pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Also they said they may have to take some skin off my back , I just want it out and this lung situation sorted. I have been taking tamoxifen for the last 4 years an oestrogen blocker so that could of been controlling the lung specs , who knows x

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi dulcie how did the royal marsden know about you to ask for scans ? X

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi again pinkylou ..the first thing you say about ..did they do a CT scan before mx...? They should have done ..then my mx would have been a smaller op..no need for major surgery..
Your tumour size is similar to mine ..plus you know far more than i do about lung mets...onc has given me the 'brush' off for weeks..until the Marsden requested them! My GP didn't get anything either! I am still waiting for this 5 pages..about my lungs..i did look on onc's screen piccy..and she couldn't seem to find them?! But the Marsden are concerned ..so at least i will be looked after..
Can they operate again on scar line..? only i haven't got any spare skin where i think the tumour may be growing..the main tumour doubled in size in three weeks!
If you think your treatment could be better..ask to go there..
Dulcie xxxx
pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Sorry about my phone text , tumour was 6cm by 2 cm not inches , but I know it has only been there since since last year.

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi dulsie , what a story hope you are ok Did they do a ct scan before your mx, how big are the lung specs ? I had breast cancer 4 years ago when I was 39 , I had a lumpectomy , 6 months of chemo , 30 radiation , sentinel node removed no nodes, they didn't do a ct scan they did chest x ray and liver ultra sound clearest so I thought, I gave had a mammogram and a MRI of ny breasevery every feb since then, I have always had discomfort along my scar line, my cancer was Er plus which they realised when they removed the tumour, anyway this year I had my mammo which was clear , MRI can back investigatand nd it turns putt I have a tumour back in my scar line. They did c t an found 8 .5mm specs on lungs , so we did taxol and avastin 12 sessions , didn't go alot but reduced my scar line tumour which was 6cm in length and about 2 in width,we don't actually know whether dices are from first tumour or second as they are saying the new scar line tumour is er neg, but I didn't realty they know, I am now on xeloda , I am on 3rd cycle but I seeing onc on 1st oct and surgeon as my chest has been stable since feb they now remove scar line tumour, I really don't know sometimes, a couple of people of mentioned royal mars den , I will wait and see what happens on the 1st x

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Gail5 why might you be coming off it...my brain..you probably have already said! When did you start it Gail?
I go the first week in October ..i was hoping they might see me earlier..as i ..think..i might have a new tumour growing quickly on mx site...yikes..
Too much 'dithering' has gone on between surgeon and onc..had mx early July..my drain was removed far to earlier! So so glad the Marsden are taking me on!
Dulcie xxxx
gail5
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Pinkylou - I'm doing OK mostly. Have scans and onc next week, so will see if I'm staying on Cap for a bit longer as only scheduled to end October just now. How are you?
Dulcie - hope the chemo works for you and you don't have too much bother with SEs. Have you got a date for Marsden?

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you Lavender..i have only just read your message and 'ditty' x
Dulcie xxxx
Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi pinkylou x
It would take a full page to tell my story..you would have 'nodded' off! lol
I have a 'rare' breast cancer and hospital haven't come across it before..well if they have they are not cracking on! I was misdiagnosed last November...then found to have breast cancer end of February...nothing happened until April ..my birthday..then i had to EC's which both times ended up in hospital...so that was stopped in agreement between me and Onc..wasn't offered a reduced or anything..tumour grew to six and a half cms! Had full mx with lymph node clearance...problems problems drain removed to fast ..in my opinion...if they had done a CT scan before mx ..they would have seen a change in my lungs..so such big surgery wasn't needed...in April they had found 2 tiny dots in lungs..thought it was nothing much!...so now growing nicely in lungs...my mx has been red and sore...surgeon..not bothered..can't have radiation..the 'tattoo' set the inflamation off even more! So now i have possible skin mets...and reacurrence back on wound site...so after massive delay...put on this chemo...i had to leave a lot out...are you still awake pinkylou...
The only good thing to come of any of this..? i have made some of the best friends ever! And i am off to the Royal Marsden..where i might get far better treatment....and..KINDNESS!
Take care and please tell me your story x
Dulcie xxxx
pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

How is Kim doing Jon ?

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

How are you doing Gail ?

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi dulcie , nice to meet you , what's your story ? I had a reoccurrence in my breast and I have 8 lung specs , I am wondering about royal marsden , I am five foot 6 and 11 half stone and I am 3600 mgs , I think 4200 is max not sure who you have mets ?

Amore_Dulcie
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies and Jon......i have come to join you today!
I have started the Capecitabine this morning ..and waiting for something to happen! I am supposed to be on a reduced dose of 3600mg daily 5'ft 3'inches..and 12 and a half stone..mostly my chemo tummy..well thats where it mostly has gone!
I am on it indefinately..but as some of you dear ladies know ..i am off to the Royal Marsden next month..so things might change..i wanted to know if that is considered a 'low' dose please? I must admit i felt the same feeling taking these pills this morning..as i did when the EC went into my hand..and i have ..never felt the same since...' spaced' out! I am going to take them 10am and 10pm..as i get up at 8.30am and as an ex smoker i am not used to eating very early..
Still wondering what is going to happen first....please bear with me for being so selfish today and only talking about myself ..sorry!
Dulcie xxxx
pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Jon , hope Kim is ok, yes that was the dose that I have been on since he beginning , I am on week one of cycle three , I eat my breakfast early like 7 or 8 and then eat my tea at 6 or 7 and always keep my tablets that far apart. On asda they do a pack of melon 3 different types it's only a pound and I find it's really refreshing , I get 3 or 4 every couple of days .

Kims_other_hal
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh and forgot to say, we got some Ondansetron yesterday which seems more effective.
Kims_other_hal
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you all for your support and advice. The sickness has eased now but she's still struggling to eat though she is getting more fluids down. I think the problem now is she's so worried that whatever she tries will have her retching again. I've just spoken to the out of hours doc again and he thinks it's possible she might have esophageal thrush. Why do these things always get worse at night or weekends when no one is around. I'll be down at the shops in the morning getting melon (which she likes the sound of) ginger beer and consomme.
Hi Pinkylou. She had a full CT and a bone scan both of which were clear. She has two nodes that have come up which they can't operate on as there is too much risk. She's also triple negative. Did you start on 1800 or was it reduced to that as you are about the same height and weight as Kim.

pinkylou
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Melon has been good for me too , also when feeling better ginger beer juice and ginger beer has really helped my sickness .

scottishlass
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Consomme soup was recommended to me. Clear and just liquid with no bits. But warming and a change from water.