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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

Carolyn, George and all, no doubt that the week off is horrendous, not sleeping, feel sick all the time, diarrhoae(can't spell this word, too hard), then constipation. i have heard on the radio this morning that boiled water with some sprigs of rosemary in is good for that sicky feeling. i am going to try today. Snowed in today in Somerset and still snowing hard, good job hubby did grocery shopping yesterday.

love to all

Ramade xx

Member

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

Morning Carolyn,

 

I can definitely sympathise as i finished my week off yesterday and was actually looking forward to starting Cape again today. Recently, and I don't know why, i experience back pain at the end of my week off which stops me sleeping. Not feeling great today, but have started Cape anyway.

Hope, after your rest, you feel a little better. Make sure you have a good rest today. I try to incorporate 'rest days' into my schedule.

Look after yourself

 

George 

 

 

Community Champion

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

Oh George I have felt horrible on week off cape this time. .wobbly,  sicky, bone pain ..hoping Sunday back on will improve.  Guess the body rebels when chemo just stops after 2 weeks. 

Haven't slept at all during night so hoping to go back for nap later ....

 

Member

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

Hi Carolyn

 

At least with lower dose your SEs should be milder. My onc says the same as yours that Cape is effective on a reduced dose which was good to hear as I struggled when i was on the full dose.

Good luck with your scan. I have one too within the next couple of weeks to see how things are going, always an anxious time. 

Hope you have some treats planned for yourself.

 

George ๐Ÿค—

 

Community Champion

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

Hello George
Just seen oncologist ..platelettes still low so down to 800 x 2 peachy pills again on Sunday when I restart ! But she assures me they should still be working
Got scan at end of month so all will be revealed. Blood pressure low so she thinks that's what's causing the balance problems not the brain mets ..hope so as that's sortable! Amy way enjoy holidays and treats ..quality of life with this damn disease.
๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ
Member

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

Morning all,
just had a quick catch up regarding your news. Good to hear about holiday plans; it is great to have something to look forward to. We are hoping to go to Spain/Portugal in March, all being well.
I too am on my week off and experience the same SEs as the rest of you: dodgy tummy and sore hands/feet. Also, get joint pain which disappears when I restart chemo.
Off to movies twice this week. Saw Mary Queen of Scots last week, which was really interesting, going to see Stan and Ollie this evening and Green Book Thursday. Nice treat during these cold, dark nights.
At the moment, I am at hospital waiting to see onc. No results for me today as i have requested to get TMs every 6 weeks instead of 3.
Hope all well with you all. Keep planning those holidays and treats.๐Ÿ˜Š

George๐Ÿค—
Member

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

Hello and thanks for your replies. I too am worse on my week off. I finished on Friday and since then have felt sick and got stomach ache and diarrhea has started and I don't want to do anything. My TMs go up and down each cycle. But as you all say, if the pills are working, it's a price worth paying.

Hope you all have a good week and Lynne enjoy Spain !

Love GG XXXXX

 

Member

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

Hi Graceland girl.....I am pretty much the same with bloating and feeling full, but am hungry again.  I mentioned it to my Onc. and he said that itโ€™s not unusual with my cancer...ie. peritoneum.  He advised me to eat little and often, which I try to do now.  I eat smaller meals with a snack in between.  One problem is that when I snack I tend to go for โ€˜treatsโ€™ maybe biscuits or crisps or cake.  Trying to have

healthier snacks like banana or fruit.

And Carolyn I am always being told how thin I look, but I am within the healthy weight range.......

I lost a lot of weight during IV chemo last year but have gradually put some back on

 

agree with everyone else as well regarding feeling unwell in week off.  Diarrhoea and nausea etc.

 

I was due to start cycle 7 tomorrow but mentioned to Onc. that we were hoping to go on holiday next week so he insisted I have a cycle break.  Hope the TMs donโ€™t go up too much, but really looking forward to a week in Spain.

,

 

 

Community Champion

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

Just a small irritation .....since I've been on cape ...I can varnish my nails before bedtime. ..next morning polish has virtually vanished! First time in 50 years I have not had polished nails ..is it just me being weird ?
Community Champion

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

Yes exactly how I feel. Nothing tastes nice either. .just eating basic stuff ...used to be a real foody now it's just to survive ! I'm on my week off chemo now so hope appetite gets better ......lost weight again too. Always battled with weight but now I hate being just 9 stone ..too thin for me! !
Member

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

Hi All, I wonder if anyone else has trouble after eating. Even if I have just a small meal now, I feel so full and bloated and need to loosen my clothes. But at the same time, I feel empty inside and want to eat.

Does this sound familiar to anybody ?

 

Love GG

Member

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

Hi Bon, yep doctors should read this site for sure. Variety as you say is the spice. i bought laxido over counter very effective without endangering or clashing with our meds.

Now this is interesting.... i have had HR pos for years, had biopsy done and i'm no longer HR pos, i am not HER either so i guess this means i have become triple negative, i will discuss this next time, we were stunned at the consultation, call me thick but i didn't think this could happen.

Anyone else??

love and hugs

Ramade xx

Member

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

Hi Ramade, I've only done one cycle but almost immediately became a bit constipated. Not too bad as I tended towards diarrhorea before. Docs should read this thread. It is apparently possible with cape to have an explosion in the morning and constipation in the afternoon. They say variety is the spice of life. I've been prescribed laxido to offset the constipating effects of codeine. Seems to work.

Let's talk about the weather

love to all Bon xxx

Member

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

Hi carolyn

i hope your platelets and blood spots recover before next round. Thanks for confirmation itโ€™s not just me who spends half the day in the loo! Are you ok when on the peachy pills as for me itโ€™s everyday on or off pills! I too eat bland food, soup, oven chips and baked potatoes, I donโ€™t eat dairy but my OH has found lovely puddings for me made from coconut milk. They are a treat all from Sainsburyโ€™s!

Scan booked for Monday 7.20 in the evening, Iโ€™m usually heading for bed soon after that so will be excited for a trip out in the dark.

results the 6th Feb. Hoping for stabilisation or improvement in liver as new oncologist described it as extensive liver lesions of all sizes. 

Trying to stay positive.

Good luck to all on cape. Xx

Community Champion

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

I have had a few explosions too with cape on the week off. Try to keep to plain foods ..I live on cuppa soup, rice pudding and ice-cream! !! It's about 2 hours after each meal I agree ..then it's a mad dash to the loo . It's a good treatment though so worth trying to keep going with it. I'm hoping my platelettes recover after Sunday when I finish the peachy pills for a week and go clinic Wednesday for blood results. The blood spots on my arm faded a bit but now over my face ...yikes not a pretty sight but it's only cosmetic.
Member

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

Hi All

I've had good news my tumour markers are now down to 1600 from 2900 3 weeks ago so going in the right direction. Iโ€™m on my third cycle of cape, Iโ€™m finding it quite hard to manage, I eat and then 2 hours later Iโ€™m on the loo. Every meal!! Iโ€™ve tried the Imodium given to me by chemo nurses but this just gives me worse stomach ache. Iโ€™m not sure what to do, it really restricts what you can do, I spend the majority of my time at home because of the tummy problems, just wondered how others managed it!

i have also had my dose reduced for 3rd round from 2150 to 1650. But no change to tummy or fatigue.

any suggestions welcome! 

Good luck to all cape crusaders! 

 

Bel xx

Member

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

hi all,well i told the onc that i had bad constipation and he said no this meds gives you diarrhoea.

well i guess that's it then. i have bought some Movicol though, on the sly!

ramade xx

Member

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

Hi Ramade, if you decide to give it a go get one as natural as you can, and if you find it helps itโ€™s very easy to make your own, trust me if I can anyone can! Kxx

Member

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

Thankyou Kate i will look into Kefir

Ramade, hugs to all xx

Member

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

Metoclopramide is the third anti sickness drug i have taken, (been feeling sick for over a year now and only just started cape) and it seems to work better than any of the others. Still don't feel like eating.

Member

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

Hi All ,

 

It sounds like we all have the same SEs...tummy ache, diarrehea followed by constipation and a sickly feeling after eating. Also my fingers have started to crack and bleed. But if the pills are doing their job, I guess I'll keep on popping !

 

Also, thanks everyone for travel advice

 

Love to all..GG xxxxxx 

Member

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

Hi Ramade, have you looked into taking Kefir? It certainly helped me when I had problems with infection after some dental work, which I appreciate isnโ€™t your issue, but two friends of mine..one did have bowel problems, the other more digestive (ulcer and indigestion)..have found it has helped them, so it may be worth a try. Kate xx

Community Champion

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

Yes agree but hate all these things . At the moment I just feel sicky so taking Metoclopramide which hospital have issued ..not sure if it's working that much ....but I'm trying to eat something ....
Chatting with gp next Monday (no appointments ) so telephone help with all this medication .
Sympathise with constipation ..hate it ..spent an hour in loo yesterday trying to shoot the rock out! Too much info ..whoops .
Member

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

thanks Carolyn, i really want to stay on it because it's working.

Ramade x

Community Champion

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

Ramade

I don't get on with Gaviston ..doesn't do anything for me at all. I use rennie tablets and things the hospital prescribe for the trots or constipation. Horrid side effects to deal with .....xxxxx.
Member

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

Can anyone help, side effects are really sore tummy and either  constipation or diarrhoea. Does anyone take gaviscon for this?

Community Champion

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

Hi Lynn

I donโ€™t have any links to the armed forces but my Dad did and I think it was through him that I found out about this policy. I still think itโ€™s pretty reasonable even without the discount. The past couple of years I havenโ€™t been able to travel further afield due to being on chemo so have used Eurotunnel again for European trips. As Iโ€™ve said Iโ€™ll try and update the travel insurance thread and let this thread get back to its roots!

Having said that 8 hope all Cape crusaders are coping with the side effects and any dosage reductions help, but still kick the little uggers hard.

Nicky x

Member

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

Hi Nicky.  We also use Axa Ppp and have done for three years.  I have claimed once on a trip to Majorca for UTI and submitted the receipts when I returned home and received a cheque back from them within a week..

Like you say it Covers both of us = another benefit for us is that there is no age limit, a lot if insurances only cover up to 70 and my husband is 74 now.and has had a minor heart arrack.

i discussed the terminal question with my Onc and he said that he didnโ€™t consider.secondsry as terminal, these days it is incurable but treatable and he said that he saw no reason why we shouldnโ€™t be having the same conversation next year when it is due to be renewed again.  He did say that he canโ€™t predict the future but then nobody can about anything.

when I rang and spoke to the insurers I mentioned this to them and the lady asked me if I had ever been told that I had less than 12 months to live, I said no and she said that wsa all she needed to know.

Do you have any connection to the military - we both served and were told that the price was discounted because of that.

 

 

Member

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

have a good time Nicky, if you feel that you can do it, go girl

ramade x

Community Champion

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

Hi Graceland girl

Id say go especially as your oncologist has said you are fit to travel. Pace yourself as others have said. Since my secondary dx in 2008 we have gone several times to USA and also to South Africa on a couple of occasions. In fact weโ€™re off to Miami next month as Iโ€™ve just had my most recent scan results and as Iโ€™m still stable and currently NED in my liver I have grabbed the bull by the horns! The stumbling block will be insurance. I have just taken out an annual (yes, annual!) policy with AXA PPP who will cover me and my husband for worldwide for ยฃ465 which I think is a good price. They donโ€™t ask any questions about health although there is a question about being terminal. When I said that I had secondary BC but it was being treated and wasnโ€™t curable they said that it was fine. They only do annual policies so if you can find a single trip one for less then maybe go with that. I will update (when I can find it!) the travel insurance thread.

Happy holidays!

Nicky x

Member

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

 
Member

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

Oh I would say go for it. Me and hubby went to Las Vegas and really enjoyed it. As said, just be sure not to overdo things and you should be fine. We upgraded to premium economy so had more legroom and space to walk about- previous dvt so had to be careful. The insurance is a pain. Finally managed ยฃ440 for the two of us for 10 days. Life is for living and no pockets in a shroud etc etc ๐Ÿ˜
Member

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

...Hi Graceland girl...

 

I think that you should  definitely go if you feel  well enough.  We enjoy USA and have been several times since my diagnosis in 2012.  We do road trips and have a hire car so can - on the whole - do things st our own pace.

The last time we went We had earlyish nights, but were up early.  If you can have a time to relax each day and do things at your pace and your friends understand that then you can enjoy it.

 

I am just finishing my 6th cycle...we have a holiday in Italy booked for May but I have a secret desire to go back to the US later on in the year .... just hoping that the peachy pills continue to work their magic

 

Having said all that I also enjoy day trips to the coast or nearby attractions... just nice to have something to look forward to 

 

Let us know what you decide

 

xx

 

 

Community Champion

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

Oh graceland girl ..go for it if you feel well enough to venture across the pond. Sounds like u are getting a good quality of life with the peachy pills which is good. Do it now whilst you can. Apart from Europe we have never done long haul flights even when we were both fit and well........๐Ÿ’Ÿ๐Ÿ’Ÿ
Member

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

Hello everyone , hope you are all feeling quite well on this sunny day. I've lost count how many cycles I've had of Cape...I might be on my 7th one. I've been lucky that I haven't had any dreadful side effects. Mostly mine are feeling bloated when I've eaten  even if it was only a small meal, and not being able to do anything strenuous. I need to sit down all the time. I do get diarrhoea but that seems to make an appearance on my week off !  Because I'm not feeling too ill, my friends want me to go with them and make a return trip to Graceland, Tennessee. Has anyone ventured over the water to USA whilst having treatment ? I asked my Onc what he thought and he said go, and I could take a break from the pills. I'm not sure if I will go as I'm a bit worried to commit mysel....but its nice even to think about it.

 

Best wishes to you all GG xxxxxxxxxxxx

Community Champion

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

Lynn
I got nausea and diarrhoea on my week off too ...on day 4 back cycle 8 (I think ..loosing count) feeling better today ..think it takes a few days to get back into system as well. When I was off the peachy pills last week. .Oh did my bones ache more but better today.
Hello cape ladies ..keep taking the peachy pills ...xxxx
Member

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

Hi. I am just about to finish my 6th cycle...week off starts Saturday. I have two red spots on the back of my right hand. I thought that it was due to the SE of dry cracked hands but maybe not. My fingers and palms are dry and cracking a bit, but the udderly cream helps a lot.
No sign of any hair loss yet, so fingers crossed..though my Onc did say that I was unlikely to lose it again.
Hoping that my week off doesnโ€™t prove too troublesome I usually end up with Diahrea and nausea.

Love to all

Xx
Community Champion

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

Hello Ramade

Thought it worth mentioning ...might be a load of old tosh but sometimes we have to try to sort things out ourselves.
Hope your red spots go on your week off though. .. mine on back of my hands now as well. Are u getting any hair loss ? Think I getting a bit as I wake up with hair in my mouth and a bit loose stuff on my pillow. Xxx
Member

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

hi Carolyn and everyone, i have just finished my second cycle so i'll let you know if the skin blemishes go during this week off as my platelets build again. interesting.

hugs to all xx

Community Champion

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

Hello ladies
As I take steroids I have to take Omeprazole to protect my tum against reflex / heartburn. I have been taking them about 4 months now. My friend ( retired nurse also takes them) she has researched the side effects and one of the rare ones is blood spots on arms, legs and face and lower platelettes. Both of which I have. Soooo I'm going to stop taking them for a few days and go back to Rennie tablets to see if the spots go and my platelettes recover. The oncologist was blaming Cape but I'm. Not sure now ?
It's hard to.pin point these things with so many pills and cancer dancing around our bodies ! โ˜บโ˜บโ˜บโ˜บ
Community Champion

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

Hiya Lynn
Nice to hear from you ...I find I get the trots about two hours after a meal ...on my week off the pills. I'm trying to keep a bit of a record about these things but it's hard as they change ! I went down to 9 stone on E And E but I've put a bit back on. Hoping the peachy pills start kicking in after my week off ..been Slobby all day today ...
Member

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

Hello again everyone.  Interesting to read about everyoneโ€™s weight gain losses.  I lost about a stone and a half on the EE combo which didnโ€™t work for me and gave me dreadful mouth ulcers .  I have put about half a stone back on, but ONC still mentions me looking thin.  I am within the Bmi range for my height so donโ€™t worry about it too much.

I have intermittent diahrea which usually lasts a day....but it tends to be one or two explosive sessions (sorry TMI) and then I am fine for the rest of the day.  Happens every few days and I am trying to see if it comes with any particular food but it seems random.  I try to eat little and often, but fitting in with pills and husband - who is a three meals a day man - I have adopted your rice pudding pot for my evening pills, seems to be okay.

 

I am half half way through my 6th cycle and my fingers are dry and sore but the udderly cream helps.

 

off to see the GP in half an hour, hoping to persuade him to prescribe me some mild sleeping pills, sometimes I am awake nearly all night, and then off all day.  Will see what he says..

 

love to all 

 

Xxx

Community Champion

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

Yes George I agree with you. .if we all listed our problems the thread would be huge ..but we can sometimes mention something on our daily banter the symptoms change each cycle I think. Just forced some porridge down but wasent hungry at all.
Member

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

Morning,

Yes, i agree, treatment does seem to affect our eating habits. You did loose a lot of weight when on the E+ E combo, Carolyn. I lose a stone at one point but that was due to gall bladder problems. I was also on E+E for 3 months and hated it, especially the mouth ulcers. Since being on Cape, i have gained a stone which is mainly due to overeating ๐Ÿฐ
Speaking of side effects, think it would be difficult to get an exhaustive list as we all respond differently to our treatments, but it is a good idea to share. My main symptoms have been: big D, sore hands and feet, some fatigue. However, this weekend i have suffered from constipation (sorryTMI๐Ÿ˜‚) and back pain. Not sure whether they are due to cancer, osteoporosis, Denosumab injection, Cape or something else. The list is endless. Feeling much better today though๐Ÿ˜ŠWill speak to onc when i see him in 2 weeks. At least life is never boring ๐Ÿ™„
Hope all you Cape ladies are doing well. Have a good week๐Ÿ˜Š

George ๐Ÿค—
Community Champion

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

Bon
Hope u get your appetite back. .I get on and off hunger but try to eat when I get a hunger twitch. Usually midnight so I keep a pack of bickys and coffee in my bedroom as emergency supplies. Ha ha.
I lost 4 stone in 5 months on exmestance and everminous. .not good as I looked awful ..grey, drawn and wrinkly!
Try porridge? Rice pudding type stuff ...muffins ..you need it to.line the tummy with the peachy pills. .....
Keep going Bon ..your body will adapt hopefully after a few cycles ..the peachy pills are especially good for liver mets. ๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ

Member

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

Hunger is something I don't experience. Would be good if it did. Most of my clothes are too big. 

love to all Bon xx

Community Champion

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

Oh Ramade

I find that hunger just gets me and I'm like a gremlin but then some days of the cycle Im not hungry. .it's a nuisance having to eat with the chemo pills though. I just do rice pudding or a muffin !!!!
Yes we need to compile a list of side effects as these sudden things scare us ....hard to work out side effects or progress of cancer .
Well cape crusaders please add to the thread ...
Don't just read but add your tips etc xxxxโ˜บโ˜บโ˜บ
Member

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

Thanks for replying Carolyn, i looked in the mirror this morning and thought oh no now i've got skin cancer aswell. i feel relieved that it's a side effect and l'll talk to the oncologist aswell next time i see him. i scrolled back and see someone, i think Angelfalls wants to compile a list of side effects because our group are certainly finding a lot more than is described on the packet. Glad you had a good lunch, i find Cape makes me hungry and i'm piling on the pounds but,you know, i just don't care, i have ordered larger size trousers from Damart!

all the best

Ramade x

Community Champion

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

Oh Ramade. ..SNAP ...
I'm covered in red blobs too. .mainly face and arms ...nurse at oncology says it's caused by low platelettes which I have ..mine are 88 last week which is low. .they don't itch or hurt so I'm forgetting my vanity and living with them. They don't go down that quickly either. .I'm not bothered. ..least of our worries Ramade !
Otherwise hope u ok. .I've just been out for Sunday lunch ..feeling stuffed and bloated now and I skipped desert !
๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ๐Ÿ’Ÿ
Member

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

Hello all you Capes, i now have brown and red patches on my face, they came suddenly so i'm guessing they are a side effect of Cape, Anyone else? i look a fright!

hugs to all

Ramade x