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Xeloda / Capecitabine - Your Top Tips, please?

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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?

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Community Champion

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

Hi Lynn

I don’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 it’s pretty reasonable even without the discount. The past couple of years I haven’t been able to travel further afield due to being on chemo so have used Eurotunnel again for European trips. As I’ve said I’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 didn’t consider.secondsry as terminal, these days it is incurable but treatable and he said that he saw no reason why we shouldn’t be having the same conversation next year when it is due to be renewed again.  He did say that he can’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 we’re off to Miami next month as I’ve just had my most recent scan results and as I’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 £465 which I think is a good price. They don’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 wasn’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

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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 £440 for the two of us for 10 days. Life is for living and no pockets in a shroud etc etc 😁
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........💟💟
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 doesn’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 ! ☺☺☺☺
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 everyone’s weight gain losses.  I lost about a stone and a half on the EE combo which didn’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 don’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 🍰
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 (sorryTMI😂) 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 though😊Will speak to onc when i see him in 2 weeks. At least life is never boring 🙄
Hope all you Cape ladies are doing well. Have a good week😊

George 🤗
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. 💟💟💟💟💟

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 xxxx☺☺☺
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 !
💟💟💟💟💟
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

Member

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

Hi BJR, congratulations on 38 years.of wedded bliss🎊Hope you had a good evening. Also, sounds like you had positive news from your oncologist too so celebrations all round😊. Regarding tumour markers, my oncologist said he goes on trends, whether they are going up, down or remaining the same. However, he also said he doesn't use TM results with all his patients as they can be unreliable. Mine have been super reliable- not sure whether this is a good thing as it does add to my stress levels.
It seems like you will be on a similar dose to me now. I find 1800 x2 manageable although hands and feet are very dry and cracked despite lots of moisturising.
Carolyn, pleased you had an enjoyable lunch and that your week off was easier than usual. It is important to treat ourselves.
Have a good weekend all capers with minimum side effects

George 🤗
Community Champion

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

Hello Bel and George

Yes I start my peachy pills Sunday and strange but I have felt better this last week during my Break.
In fact been out for lunch with friend today ..only jacket potato /ice-cream but nice and a swift visit to matalan for a few bits. The new pj's look tempting so.might change into them now for the evening !!
I have never had tumour markers done. .have asked but they seem to poo poo doing them. I like cholesterol done regularly as I eat so much cheese etc but they don't seem to worry.
Happy peachy pills taking ladies ...xxxxx
Member

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

Hi Carolyn and George

just back from oncologist appointment, reduction of cape by 20% not sure what that brings it down too, maths was never my strong point! 

Apparentley tumour markers are down from 2900 to 2600. Not sure what this means but he said it shows it’s working. Does anyone else have tumour markers recorded my last oncologist never used them, so I’m in the dark a bit.

Feeling more positive today, scan on 28th Jan, results 7th February. Hoping it’s good news then and will then continue on 3 more cycles.

well it’s my 38th wedding anniversary today so going to have relaxing day with hubby. Film watching and chilling I think. 

Hope all well with everyone else.

 

Bel xx

Member

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

Hi BJR,
good luck tomorrow when you see your oncologist. I too feel worse during week off, usually towards the middle of the week then i pick up again. Suspect it is because all the chemo has built up. I am sure onc will adjust your dose if necesssary. I saw my onc yesterday for cycle 22 ( might be cycle 23, have lost count). Anyway, TMs continue to rise slowly - by 15 in two months- but, as last scan showed stability, he is continuing with Cape, for now anyway. I start again on peachy pills tomorrow.
Carolyn, my onc agrees with your onc that Cape is effective on lower doses. I had an extra week off before Christmas which i would have enjoyed more if i didnt have a cold. Typical me.🤧
Enjoy your lunch tomorrow😊

George 🤗
Community Champion

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

Hiya bel

I went clinic today to get my peachy pills but platelettes lower again so down to 1000 x 2 a day when I restart them.on Sunday. They assure me still working as the reduction only reduces the toxicity not the power of the chemo? ???
Yes I feel shattered all the time. .most days stay in bed to mid day if I can as I'm retired!
Had early clinic appointment today so off to my bed now zzzzzz. Not felt too bad on my week off this time ....so maybe it gets easier as time goes on. It's getting a quality of life on the peachy pills that matters. ...so speak to oncologist and try to get dosage etc right.
Off for lunch tomorrow with friend and a bit of shopping but believe me If I'm honest I could easily give up and stay in bed !!
Xx
Member

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

Hi All 

Big day tomorrow see oncologist to discuss level of cape and side effects! I’ve spent the day snuggled up in bed  with a hot water bottle as felt really unwell and it’s my week off! 

Tomorrow is also our wedding Anniversary 38 years can’t believe it, not sure there’ll. be much celebrating going on. Never mind hope I’ll feel better. 

No scan results as that’s not till after 3rd round. 

Keep up the good work cape crusaders, it really helps me to hear about others experiences! And I don’t feel so isolated.

 

Bel xx

Community Champion

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

Ramade

My side effects are exactly the same as we are really a mirror image of each other ...
I'm on my week off now ..don't feel sicky and eating like a gremlin today and yesterday. ..mmmm let's raise

Raid the fridge again ! Oink oink 🐖🐽hope everyone else is coping ..it's a wonderful regime if the body can tolerate it ladies ...
🍰🍟🍫
Member

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

Hi Bob,Bel,Carolyn and all on Cape. The only side effect i have had so far are finger tips peeling and cracking and very sore, hospital have prescribed me some cream. i know that Cape is working for me because i have obvious lumps in my neck which are going down, also had blurry left eye, and losing teeth on left hand side, the fog is clearing, still numb face though but that is from brain. it is a drug which seems to work on a lot of people though so worth pushing through. xx

Member

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

Hi Bon and everyone else

 

i was very poorly before going on the peachy pills(as Carolyn calls them) but once into them felt better. I’m just about to finish second round, whilst I feel better than I did before taking Cape, the side effects can take a bit of getting used too and managing.

worst for me is fatigue, and dodgy tummy!!! I think it’s a case of getting dose right from what I’ve read on here. However I started on 2150 twice a day, but have lost a lot of weight so hoping that the dose will be reduced and I will find more manageable this week after seeing onc. 

 

im not sure what others think but I far preferred having one dose of chemo every 3 weeks intravenously than all this pill taking! 

Im on to 17-18 pills a day  now and can’t get my head round it all. Luckily my OH is brilliant and managing me.

 

Hoping for a nice day today as we are expecting 2 new goats next week, pandora and Tiffany, so need to complete there house today.

 

Hope everyone has a happy Sunday. 

 

Bel. Xx

 

 

Community Champion

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

Oh Bon
Best of luck with joining us as a cape crusader. .I'm sure you will be fine with it ..although it's a big dosage ..I've just stopped mine now for a week. .yippee no 7am pills and muffin ..so.lay on for me. Although I feel better on the pills.
💟💟💟💟💟
Member

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

Hi all

Started cape today. Wasn't feeling well anyway. We shal see.

Bon xxx

Community Champion

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

I have stopped any visitors with colds calling in to try to avoid a virus ....so many people with bugs at moment ...
I'm feeling a bit sicky so having plain food rather than anti sickness pills .....
BEL ..all those rescue animals must cost a fortune to feed and look after. ...but your heart is in the right place for care. It must be nice though to have them all.
Well one more load of peachy pills tonight and then a week off ..this month I had all 150gm pills not the 500 ones. .so many to take in one go!
Member

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

Hi all and happy New Year.😊
I have been a little quiet lately for 2 reasons: I was feeling wiped out after catching this cold that has been going around which also meant that I had to have an extra week off Cape and i wanted a cancer 'holiday'. Back to normal now, well my normal- sore hands and feet and occasional dodgy tummy. Got reality check next week as back at hospital to receive 2 months of TM results. Yikes. They have been going up slowly but steadily since last May so expecting the worst. Onc said last scan in November showed stability, but that the cancer is active hence rise in TMs. Anyway, I had a nice Christmas and went away for a few days😊
Carolyn, I am no medical expert, but my understanding is that platelets help the blood to clot and neutrophils fight infections so are essential to our immune system which is why they have to be above 1.5 in my hospital. Mine did drop when I first started taking Cape and were always around the 1.5 mark; however, recently, they have started to rise. I have no idea why.
Have a good weekend all capers

George 🤗
Member

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

Hi Ramade and everyone else.

We have rescue animals too. We rescued 5 Alpacas, and 2 rather large pot bellied pigs, called Arthur and Bramble. We also have 15 rescued chickens! Alongside these rescued animals we have 15 runner ducks, 3 geese, and two goats called Pandora and Tiffany. We also have a small flock of 22 sheep. 2 rams called Barry and Kevin who we hand reared and now think they are dogs! 

 

Animals are therapeutic but hard work, my OH works very hard looking after them, as I’m all but useless now as I get worn out so quickly. I do partipate in the growing of the veg, as we’ve set up a reclining sun lounger in the poly tunnel so I can take a break any time in there.

 

The last few days have been a bit up and down, tummy not coping very well and I’ve had to resort to Imodium, hoping that next week my dose will be reduced and things will settle down a bit. I’ve also lost 10kg, so I’m sure this will mean my dose can be lowered.

 

Interestingly I get the runny nose side effect in the 2nd week of cape! Hoping that everyone is well and side effects in 2019 are more manageable.

 

Definitley feeling more positive today!

 

Bel xx

 

Member

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

Hi Carolyn/Lynne

When I was cape my neutrifils went down to 1.4. The hospital I attend like them to be 1.5. Think the neutrifils must white blood cells that ward off infection. I had the same problem when I was on FEC. I had to have an injection about 2 days after having FEC. I am not sure what low platelets means.

Hope that helps.

Linda


Member

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

Hi Carolyn. I googled the question and apparantley platelets and neutrophils ‘are partners in bacterial destruction.’

So not exactly the same but they work together..

I get them from a mobile unit one cycle and then from the hospital the next cycle. I have Zometa infusion every six weeks which is at the hospital so they fit that in with my new cycle. They do blood pressure and weight when I am at the hospital, but not when I go the the unit.
I also feel worse on my week off - Nausea, diarrhoea and shaky. Also lower energy levels, still go for my walk around the village but hubby always comes with me now.
As you say things are building up, I don’t know how long before they give us an extra week off, I expect that also depends on SEs

Won’t complain though since I know that others have worse SEs

Xx

Community Champion

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

Hiya Lynn
My platelettes ( are they the same as netrophills)
Were low last month and I only got the pills by having a lowered dose ! We are at the same stage with cape ..these things are building up. I stop pills tomortow for my week off so hoping this week they climb back up again. Feel horrible on week off though. ..
I get blood done Tuesday ready for Wednesday clinic. I always have to ask for blood pressure, heart test and weighting though. .they don't seem that fussed about these things.
Member

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

Hi everyone.  Glad to hear Bel that your bloods were okay and that your TMs are better

 

I start my 6th cycle tomorrow,

 

had bloods done yesterday and then a phone call from the hospital this morning to say that my neutrophils were too low for me to be given my next cycle.

the hospital is about an hours drive away but we have a mobile chemo unit which comes to our local hospital and every other cycle they let me get my chemo from there

 

The options were to leave it for a week or to go to the district hospital where they would do another blood test to see if they had gone up...they told me that they were just marginally low...so I decided to go through and have the blood test.  It was a two hour round trip but they did the test straight away and the new results were through in about an hour.  Thankfully they had gone up to acceptable levels so they gave me my next lot.

 

They also told me that TMs had decreased again from 122 to 111 so pleased with that 

 

This is the second time this has happened with my neutrophils and I asked if there was anything I could do to make a difference but they said -‘No it  is just one of those things’

 

I have started taking multivitamins and vit c yesterday, and I am on Adcal already so hoping the extra vits will help 

 

hope you’re all back to ‘normal’ now after the Christmas break

Hugs to all

xx

 

Community Champion

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

Oh what a lovely thing to do ..rescue animals. .they give so much love and appreciation back.
My son adopted a donkey for me this year. .she's out the donkey sanctuary at Sidmouth a few miles away. I hope to visit her soon. 🐆🐴🐮
Member

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

Hi Bel, we have a smallholding aswell and we have rescue animals, i find them really therapeutic, i expect you do too.

al the best

Ramade

Member

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

Thank you for your lovely supportive replies. I had my bloods done yesterday and they were ok, my tumour markers were better than they had been, my liver function was slightly worse than before. 

Anyhow I feel a lot better, I’ve decided to go dairy free again as I wonder whether that’s making me feel so poorly. I started eating dairy after a 5 year break when I started cape because my calcium levels were so low and I can’t tolerate any calcium pills.

so today I’m hoping for a good day, no anti sickness and less morphine and I hope to be able to go for a walk around our small holding to chat with the animals! 

Again thanks for your support, I’m really appreciate it, particularly as I don’t know anyone else on the same treatment as me.

Have a good day everyone. 

 

Bel xx

 

Community Champion

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

I take Vitamin c and d daily ..don't know if they are magic though! I stopped denosumab 7 months ago as my teeth and jaw were so sore. ..at Exeter they only recommend 3 years of it. I did 2.5 years so.nearly did my time.
I eat loads of dairy ..my old oncologist(the old school) said it was just as good as denosumab .
Yoghurt. Milk shakes and tinned rice pudding cheese.
That sort of stuff .
But I'm not a medical expert so don't quote me on this !!! I don't really like meat much
.odd piece of bacon is about it.
Member

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

Hi everyone 

 

just wondering if if any of you take any supplements.  I try to take a teaspoon of Manuka Honey every day but often forget.

was wondering if vit C and a vitamin supplement would help in these dank dark days.  January is my least favourite month

 

xx

Member

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

Hallo BRJ, I don't know whether this will help but I was on Cape for 2.5 years. I was on 1800 x 2 a day but my hospital is one of the top specialist ones in U.K. and they had a regime of 1 week on/ 1 off. This kept the side effects manageable but the treatment working. They have vast experience and said it made no difference to success rates.

I do think that some Oncs can be quite inflexible with their treatment regime as they feel safest following the guidelines. I'm sure it's worth a discussion though, it must be better that than having to give up on Cape?

Member

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

Hello Bjr I am sorry that you are feeling so unwell I agree with Carolyn that the key is the doseage. I am on 2000 x 2 daily which my Onc tells me is a good amount for my height and weight but also leaves room for reducing it if the SEs become intolerable.
My SEs seem to occur at their worst at the start of my week off. Nausea, upset stomach and tiredness, also much more wobbly. The chemo nurse said that it is at that point when we have the most chemo in our system and that the week off lowers it ready to start again.
I would ask your Onc about reducing the dose.

Like you Carolyn I think that it is good that we post our SEs. I also feel wobbly and this is the only time that another person has mentioned it. Strange how comforting it is when we know that others have the same problems.......wouldn’t wish them on anyone though.
I am just about to start my  6th cycle on Friday, so far my SEs are tolerable and TMs are falling so here’s hoping

Thinking of you bjr and everyone else of course.

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