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Xeloda / Capecitabine - Your Top Tips, please?

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

Highlighted
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