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Xeloda / Capecitabine - Your Top Tips, please?

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