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Xeloda / Capecitabine - Your Top Tips, please?

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 isn’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?

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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

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 £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 ! ☺☺☺☺