Xeloda / Capecitabine - Your Top Tips, please?

Living with secondary breast cancer Treatments and medical issues
1001

Thankyou so much Nicky and waffles it is such a relief when the dreaded results turn out much better than what you hoped. All that worry about my unknown onc deciding for me actually worked out to be great. She was standing in for mine because she was on holiday and through that got me a scan earlier than my own onc also it was examined by the top onc at the hospital through the MDT meeting. So I have been very lucky of which I am grateful for.

Hugs to you both and good luck to others waiting scan results xxx

1002

Hi Debra

As Waffles say’s we all know how you feel. It is good news if your bloods are ok one of the tests will be for the liver. It still doesn’t rule out the fear that something might be wrong your scan results will show clearer results and I am sure they will be ok I am sending you good cyber vibes that this will be the case.

Best of Luck for Friday I will be thinking of you xxx

1003

Hi Debra

So sorry you have progression in your liver I really wanted you to have good results. I hope Everolimus and Aromasin will work for you

I was on Everolimus for 16 months but I had exemestane with it. I hope you manage to stay on 10mg I was knocked down to 7.5mg because of a very sore mouth with lots of mouth ulcers but I got over that and learnt how to cope with them I wanted to go back up to 10mg but because I stayed stable they left it at 7.5mg. Because I had progression and hormone drugs no longer worked for me I was taken off it and went on to cape. Sometimes I felt quite alone on Everolimus because so many came off it through not being able to cope with it. It is doable and side effects get less as time goes on I have read somewhere that a lady was 31/5 years and still going. So good luck and if you need to chat I’m here.

Wishing lots of love xxx

 

 

1004

Hi I have liver bone and peritoneal Mets…i dont understand the bloods.my bloods are always ok.but still get progression…get my next ct results Tuesday…at least theyv given you more treatment-so how can the b.c nurse now say that…i wish I could join you for drink.i havnt had one for ages I’m frightened I might get mentally unstable.I’m thinking of you.sharon,:heart:

1005

Hi Debra I went to that area last August…for a week.it was lovely we stayed at llandudndo…got cable cars up mountain .visited a lot of towns by local bus Betsy co.ed was nice…have a lovely time…take care sharonx

1006

Hi peachy warriors

 

How are you all doing. I am on my free week from my 7th cycle do you remember I had 3 weeks off the tabs due to uncertainty and then a scan showed the soldiers were fighting the battle. Well my hands have been great still no finger prints but after this cycle they are very good and so are the feet they had got very red and started to split on the first missing week as though the cap was still working and the feet got a lot of dry skin now even the feet are great. So the 3 week rest has been worth it.

 

So I hope the capecitabine is still working for you I was sorry Debra didn’t make it I really hope EE/combo will work for her.Sending love and hugs to you all xxx

1007

Thought my experience recently might raise a smile! I was on Cape for 21/2 years but came off it in November last year. My hands and feet are almost back to normal…

Anyway we set off on a trip to India a few weeks ago, the airport security was tight when arriving in New Delhi. After several checks we were lining up to…press all our fingers, followed by thumbs…on each hand… On a small screen.“oh boy! This will be fun!”

So my turn comes and I’m pressing as hard as I can. Cue the Indian official looking annoyed…“up!” he cries…“down!” I try again…and again…eventually he gives up…and waves me through. Was I going to admit to not having real fingerprints? Was I, heck!

We had a great time…and even saw a tiger. xx

1008

Forgive me butting into this thread as I am not on cape …I’m intrigued by this loss of fingerprints lark …it’s unbelievable and think what mischief you could get up to and not be traced!
I think if it was me I would want a signed letter from oncologist though as it could be difficult at some airports!!
Anyway keep taking the pills ladies.
Hugs xx

1009

Oh Stillhere

 

How great to hear your story about finger prints well lack of them I really had a good laugh. I envy you with your trip to India I bet it was great and to see a tiger how lucky was that. I saw a programme on T.V and they had difficulty finding one with the expert guide. 

2 1/2 years thats great hope I can go that long although with the skin mets increasing I cannot see it. Been on the Exemestane with Everolimus the hormone drug doesn’t work for me now.

 

Hi Barton glad you are doing ok I have bought some cream for the feet from Aldi of all places Foot cream with 10% urea hoping that is going a good one although I have been great with the feet I keep them well moisturised with a cream the Tissue Viabilty nurse prescribed for me instead of the E45 which I get on prescription for my skin mets it is called Balneum with 5% urea so I have been using that I looked it up on the internet it is quite dear.

 

Wonder how you are doing Waffles is it still being kind to you? When are we going to plan that bank raid I can use the motor scooter for a err…slow get away

 

Well love to all our peachy warriors (((((x))))

1010

Oh no marirose I can’t be in your bank raid gang BUT i can be on look out from the pontoon boat on the lake at the cyber cafe if it helps.
Hugs xxx

1011

Dear Barton

I rely on my Loperamide when the runs come on I know when I go back onto the peachy soldiers tomorrow it will be either one or the other I am just not normal.

My friend does takes her tablets after weetabix at 6 am and then her tea pm the onc has prescribed different tablets and she has been told she must ring the assesment ward if it gets worse. She seems to suffer more on the tablets last time it was EE/combo but then that was diarrhoea she has been alright on IV chemo. I think the new pills are better but she is still having the odd time now I just wonder if it could be her liver as she has quite a few mets there.

 

Well Peachy tablet cycle 8 tomorrow I wonder if it will be onc or registra its my jab day as well so I will be all afternoon waiting and waiting.

Love to all (((hugs))) xxx 

1012

Hiya marirose.
Hope everything goes ok tomorrow . You seem to cope with the bone juice injection better than a lot of us.
That was a lovely dedication you posted for cress .
xx

1013

Thankyou Carolyn

I have had a very good afternoon I have been able to get some important information for some treatment. I knew I would be seeing the onc’s registra and we had a good laugh she really is part of the team I think she accepts me talking to her as a friend. 

 

To my peachy friends got the peachy soldiers ready to go to war on the pesky blighties number 8 now lets hope they keep up the good work. Hands and feet been fantastic although my nose is getting sore again and my eyes get sticky and smart at times but Rachel our registra has prescribed some oinment for the eyes. But my dripping nose is driving me up the wall but this cold weather isn’t helping we have had horendous weather bright sunshine wind rain hailstones thunder storm and snow now its lovely and calm and now mild I don’t belive it is May next week.

 

Well love and (((((((hugs)))))))) to you all  xxx

1014

Hiya marirose.
Glad u had a good sort of afternoon and it seems that the onc team are pulling out the stops now.
The new treatment will b a new focus for you and as the peachey soldiers and bone juice are working on the bones …it’s just a case of sorting out the skin Mets now.
Sending hugs xx

1015

Hi Marirose,
I read about your appointment on the skin mets thread and I’m very pleased that it went so positively for you. I sympathise on the runny nose front. I still have a REALLY runny nose made worse by cold weather and eating even moderately spicy food. I know it is a harmless side effect but it can be very embarrassing to have continual drips falling from your nose especially when you’re in the middle of a conversation or eating in public ?xxx

1016

Hi Waffles
I really am a drip these days. Can’t go anywhere without loads of tissues. But have you noticed it always happens when your hands are tied. Still one of those things might be better when the weather warms up.
Love and hugs to everyone xxx

1017

Hello Everyone - Sorry, I have been off for a long time because I have been too busy.  Which is good news.

 

We had a brilliant holiday, before and during which I had a total of three weeks off the Cape because I wanted my feet to be in good condition.  It worked out well and I could walk almost as much as I would have wanted, which is a lot.  Then, while we were away, I started cycle 9, on 50% of my original dose, and things were very good till about day10, by which time we were home.  I did loads of sea swimming and the sea water seemed to help a lot.  Bowls of salt water since I have come home haven’t had quite the same pleasing effect, but that is at least as much to do with not being on holiday any more!  Since we came back I have been working pretty hard.

 

I’m now 3/4rs of the way through cycle 10 (still on 50%) and it is OK, but I am having rather more trouble with my digestion than previously which is a drag.  My feet are a bit dodgy but not as bad as before I reduced the dose. I have got better at looking after them by using dressings on places that might get sore before anything happens, as well as continuing with loads of different creams (latest are Hydromol, diprobase and Body Shop Hemp cream for feet - all fine, but nothing startling).  I have got a range of thick (and ugly) socks from M&S which I wear with sandals when I possibly can.  My toenails, however, are not a pretty sight (where they still exist).  

 

A scan a couple of weeks ago showed no meaningful change on the liver mets, but I think it will be the next one that will tell us whether I can get away with 50% dose or whether the Cape is not effective at that quantity/at all.  I have my fingers crossed.  Up to now I have not been too terrified of the scans.  I find them nerve-wracking but I tend to rely more on how I am actually feeling.  For anxiety I am on a low dose (10 mg a day) of Citalopram.  I think it has helped me, as has a course of CBT.

 

Oh those runny noses - Waffles, Barton, Marirose; I have it a lot.  The funniest, in a way, is when I am snivelling on public transport and people back away.  It makes me want to wear a placard saying “It’s YOU PEOPLE whose bugs I need to avoid - you won’t catch anything from me”.

 

I have had the occasional bit of sickness, Marirose; domperidone deals with it fine for me, as does my now quite serious mint humbug habit (which the dentist rightly disapproves of).

 

The jury’s still out on acupuncture as a help for my feet but I am keen to keep trying things. My pilates teacher has recomnmended rolling my feet around on tennis balls, which undoubtedly stimulates the circulation and has some positive effect on peripheral neuropathy.   I feel that the oncs don’t take enough interest in alleviating the side effects of these common drugs - if you could keep people on them for longer by making them more tolerable, it might not be a glamorous breakthrough but it would sure as hell improve our longevity and our quality of life.

 

Touch wood I don’t think I have ever had any adverse effect whatsoever from denosumab.

 

 

1018

Hi Mazurka I am glad you have had a brilliant holiday it’s just what you need when going through treatments on this horrible disease. I was interested that you found swimming in the sea a big help I have read that a Japanese man healed himself from cancer one of the cures was soaking in hot mineral springs could the salty sea water help??? it makes you think. I am on my 8th cycle 1 week over tomorrow.

 

Hi Rachel I started last November but I have had 3 weeks off due to a concern that my skin mets were increasing so I stopped cape while they did a scan and we found my main tumour had shrunk from 35mm to 26mm and everything else stable.It did help my hands to recover from being very red and although I was not taking the cape my hands began to get splits they soon healed and have not come back.I was also interested to hear about your new ointment. I have just bought some handcream with beeswax for hands nails and cuticles I just keep buying different hand creams because I get through quite alot I usually look for creams with vitamin E in and urea but I have now stopped paying silly money out there are lots of cheaper brands out there.I have bought foot cream from Aldi with 10% urea I bought loads as it was £1.99. Just hope it works.but it was one of those on off sales but I have used the face creams from Aldi before because I read in a paper how Aldi facial creams were very good and I agree.

Oh and my eyes get terrible at times and it is due to cape I had some eye ointment prescribed last week and I hate it.My nose dribs and gets sore too.

 

Hello Barton I always love your posts regarding the cape you have so much knowledge I know you have been taking cape on and off and during the time when our lovely Belinda was around.She was an inspiration to us all she did 3 1/2 years on cape.

 

Well good luck to all our peachy friends love and (((hugs))) xxx

1019

Hi ladies. Mind if I join you on here? Scan results today showed a “significant change” in my liver (backed up by blood test results) Strangely bones are improving!? Starting cape on Thursday after burning through tamoxifen, anastrazole and e/e in the space of 17 months! Sadly none of the hormonals seem to have worked for me. I’m really scared about the future (hence posting at crazy o’clock!) Despite continual bad news I feel physically well and continue to work full time. To add to my worries I’m meant to be taking up a position with my company in Central Europe in 3 weeks time (I’ll be given a private GP over there but healthcare remains directed by my London hospital) I’ll be flying back regularly for scans, appointments etc. Now I’m wondering if I should continue with my plans- will I be able to manage this on the new meds or will a change give me a focus away from bl**dy cancer? I’m just so worried about everything right now. If only I could get a decent night’s sleep which might put some perspective on things… Bah! Lots of love to you all xxx

1020

Hiya and welcome to the family . Glad to see that others are awake at silly o clock too.
I have no experience of cape and so will leave the experienced members to reply.
Welcome.
Hugs xx