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Xeloda / Capecitabine - Your Top Tips, please?

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

Katherine. .its awful waiting for results. Im sorry to hear of your prognosis and yes reading about lynda Bellingham really brings me down too. My secondaries are also in lung. I havent asked about prognosis as I'm too scared. They just keep saying I'm doing well and looking really well.

But yesterday i had a really bad turn. Was just sitting on sofa on my own...hubby and daughter were out..and was about to get up and turn veg off the hob when i suddenly became really giddy like I've never known before and the most terrific pain in head. I couldnt get up and i tried but fell to my knees. The room was spinning and as i tried to get up and go in one direction i ended up stumbling in the other direction. I managed to phone hubby and daughter to come back. I felt awful.
They rung the chemo nurse helpline and she wanted us to phone ambulance to go to A&E but i couldn't face that. So waited for an hour and it passed but still had just headache. The nurse rang again and said to take 2 paracetamol. I fell asleep then for an hour and felt bit better. She rung again at 10.30 pm to check on me and said they'd ring again this morning at 10.
Told me to stop capecitabine until they ring today.
Hope they dont take me off it
Love bev xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Also, my nurse gave me pyridoxine for my sore feet. I'm not sure if it will work but wondered if any of you ladies might want to try it to see if it helps you? It is a form of vitamin B6 apparently. As it's free on prescription may be worth a try?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi there all, Just wanted to say I'm just starting my third cycle of Cape and am not feeling too bad and side effects are at present liveable with, if you know what I mean. I'm going for a scan on Friday and then have an appointment with the Oncy two weeks after. I find the waiting for the results so awful. Probably because the news is so often bad but it is so difficult to think of anything else at all. Do all of you ladies feel like that? I must say my tumours are secondaries in my lungs and liver and before starting on Cape I was given weeks to live and was told that Cape may hopefully extend that to a few months. I get so frightened of getting results and having just heard the news if Lynda Bellingham has sent me in a bit of a downwards spiral. I'm sorry I sound so negative. I try to put on a very positive front for everyone but in my darker moments I feel so afraid..
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton I agree how are we suppose to exercise with these feet.i do get a burning sensation and they are worse after standing or walking on them,mine also tingle.Im supposed to be starting third cycle on Thursday and have an onc appt weds so will have to see what she says about hands and feet as I can only imagine they must get worse the more cycles you have.
Kaye x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Bevlaar - I'm hoping for you that you have a good reaction showing at your next scan.  No progression is good though!

 

Barton.x

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

Kaye - that is exactly what I have done - slathered vaseline on feet, little cotton socks, feet up for as much of the day as possible.  I don't know - we are supposed to get exercise, but how can you when your feet are killing you?  I don't know about you, but I get an awful burning sensation, and just standing up means they burn for ages afterwards.  Luckily, the vaseline seems to be working (second day of doing very little and staying off feet for as much as possible, and MORE vaseline!).

Good wishes to all the Cap.gang.

Barton.x

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

Morning all hope you're all ok this lovely sunny day.thanks for your tips about Vaseline hands and feet are much better today and after resting them for a couple of days I might venture out today to make the most of the sunshine.
Take care all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes it was my gp that said forget about expensive branded creams and use good old vaseline! My feet have been great.
Hope everyone is keeping well and having a good weekend. Still quite warm here today
Love and hugz ....bev xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hallo all, whoever said Vaseline, thank you! It works really well, I have one split on little toe, that has savlon instead. I also have sheepskin boots which are really good in winter or keep socks on.
For the lady asking how long to show an effect (sorry, I find this site quite difficult to navigate round, can't see a name now!) I have been on Cap for 14 months, have scans every 4 months and have had a steady reduction from 2.5cms to 6mm. My axillary recurrence, the 6th one over the last 5 years, is stable. Oncs seem happy with that. Everyone is different though and the regimes can be different. I am on one week on, one week off and have been for about 10 months. Hope this helps x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes the vaseline works well for me. I had a ct scan after my 3rd cycle of cape but there was no change from my scan at dx in may. Onc said as long as there was no progression he was happy that I was stable. Hoping that my next scan in nov will show some shrinkage xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton thanks for the tip,I will try the Vaseline and the socks and I'm going to keep off my feet today apart from loo breaks see if this helps,I hate being stuck indoors but needs must .
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hilsy, as regards  how soon it works, I can only tell you how it has affected me.  I had a CT scan during the second week of tablets on my third cycle, and when the Onc.gave me the results he said that I had significant reduction in all areas. Here's hoping it has the same results for you, and all Cap.ladies. Barton.x

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

Bertie1, I'm in the middle of the 2weeks on of my 4th cycle, and my feet have just started to get really sore. Not cracking (yet), but very sore to walk on. I am following the advice of someone else here (so sorry, can't remember who) and have slathered them with Vaseline and am wearing little white cotton socks. I'm spending the day indoors and trying not to walk around too much. I did this the other day when my feet were a little sore (not as bad then) and it helped tremendously. Hope it helps you, too.  Barton. X

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

Morning ladies ,well It looks like the diarrhoea has stopped but my hands and feet are stii quite sore,my feet are beginning to crack has anyone got any tips on hoe to deal with the cracking .hope you ladies are all doing ok .
Love
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all hope you're coping ok! I was just wondering if anyone knows how long it takes for capecitebine to start to work (how many cycles), a little info people have on their experiences of shrinking tumours and how effective it is on crossing the blood brain barrier. Is it that it only has a few times or is it thought to be pretty successful in doing this? Thanks lots x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes i get diarrhoea as well at the start of my week off cape! Youre right when you say it comes on quickly. Mine starts with a purging in the stomach...awful feeling.
Good luck though ladies for this week xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies
I found I often had a bout of diarrohea (I must learn to spell that bloomin' word!) at the start of my week off. Once on a canal boat trip in Amsterdam just after I'd finished my first cycle of Cape! Hmmmm, not a pleasant prospect of leaping off the boat but luckily an incident was avoided! Also I do find the night of my Denosumab injection almost always does the same. Luckily it's the only symptom I do get from the injection so I just plan around the side effects now!
Good luck all Cape ladies, hope tumour markers etc continue to fall for everyone.
Nicky x

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

Hi Helen and Bev and all the other Cap ladies.Thats great news about your tumour markers shows it's doing it's job.I have had diarrhoea and sickness last night but I finished my 2nd cycle o Wednesday ,but I had my D injection on Tuesday so not sure if that has caused it cos I haven't had it up till now only sore hands and feet.
take care all
Love
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Great news for you helen....keep it up girl!! xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cap ladies! Had my clinic appt yesterday with Onc. Showed my feet and ankles. Agreed rash around ankle is fungal. But gave me a new script for cracking feet and hands..Diprobase lotion..
Also gave me good examination when i mentioned pain in chest. Its definitely muscular and he gave me ibuprofen and cocodamol. Been taking them since yesterday and the pain has almost gone already.
And....my tumour markers are down from 96 to 83!
So starting 5th cycle on Cape.
Hope everyone else has had a good week with results! 😉
Love bev xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,cap gang,hope you are all well. My markers are down by nearly 200 after first cycle!!! So it's the only bit of good news I've had in a year!! I'll get scanned after four cycles with have a break in the middle so I'm so happy,that hopefully it's working.
Huge hugs,Helen xxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Cap gang ,hope you are all ok .My week off starts today yippee cos my hands and feet need to recover.
Barton it's good that you're not having too many side effects hope it stays that way.
Helen hope you have a really fantastic time in Mickeyland.
Love and hugs to you all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Kaye, thanks for the good wishes! When I listed my side effects, I forgot the temporary ones - a couple of leg rashes (sorted by Savlon), and some really nasty (almost continuous for 2 weeks) headaches on cycle 2. Not had those since, though, thank goodness. I still feel I have got off lightly so far, especially compared to some people (poor Helen, for instance). Anyway, best wishes to everyone. Barton. x

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

Thanks your so kind ,I know what you mean about watching the pills go down we don't half live life in the fast lane.Glad your hands and feet are ok ,one thing about this bloody disease it gives you an excuse to be lazy sometimes.
Hugs to you
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Bev hope you enjoyed your show last night,it's good to have a laugh and I'm sure you'll get to lake Garda one day .Yes we all seem to be doing ok with the Cap and coping with the side effects,as isaid I'm going to have a duvet day today as when I rest my feet seem better.
Love
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Kaye,yes,you can come in case xxx I know what you mean I'm counting days to week off meds! I have pill box that I put every days pills in ,(£1shop) and love to see it going down. Gosh I live on the edge lol
You have a duvet day,it does you the world of good. My hands and feet are a bit red this morning but nothing to bad,just tingly!
Huge hugs,Helen xxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Cap gang hope you're all doing ok.Im going to have a duvet day today as my hands and feet are quite sore,so looking forward to my week off.What a life we Cap ladies live when we look forward to a week off medication ,but as long as it does the job we have to keep going.
Helen good luck with your D injection ,I bet your getting really excited for your hols,any room in your case for a little one.
Take care all
Love Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning cap gang,how are we all doing?
Dani,thanks that's put my mind at rest that you had three weeks off. Xxx

My worst nausea is in the evening and through night!? But if it's kicking Cs butt I'll put up with anything. See onc tomorrow before my hols and get second D injection for bones.
Take care cap gang ,stay strong and huge hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cap gang!  Dani your holiday sounds like it was idyllic.  I have booked and cancelled lake garda twice in last 4 yrs due to impending surgery....will get there one day! We all seem to be doing ok on Cape...manageable side effects on the whole. My rash is improving with the canesten and vaseline is great for feet and hands.

Just going to watch 8 out of 10 cats does countdown! Love it....i watch it in bed and makes me laugh out loud!! 

Goodnight ladies 

love bev xxxx

 

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

Thanks Helen and Macie. 

 

Helen - i was off my Cap for 3 weeks and now that i'm back on them seem to have most of the side effects apart from sore hands and feet.  Nausea, headache, diorrhea, and now back pain but feels muscular so not sure why onc wants me to have bone scan?  The nausea has settled and to be fair had one headache in the 2 week cycle of Cap and only 1 episode of diorrhea.  I do get a churning feeling in my tum though...Feels like poison when I take it but it must be working as my cancer markers have dropped dramatically.

 

Macie - i think you and I both have had pleural effusion?  I hade pleuredeses to stop fluid coming back which worked. 

 

The holiday in Italy was amazing and as I'm of Italian origin I have family in Rome who I stayed with.  They have a beautiful restaurant out in the sticks and can tell you had as much pasta and pizza to feed an army!

 

Love and light

Dani

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

Hi Cap gang just had the D injection today,and I feel really tired don't know if it's that or the Cap roll on Thursday when I have my week off.
Helen hope the sickness gets better for you the dose you're on is quite high so maybe that's why.Im only on 3000mg which my onc said is only 75percent of the full dose!she wanted to see how I would tolerate it first before increasing it.I bet your really looking forward to your holiday.
Barton glad your not having too many side effects hope it keeps up for you.
Hope all you other Cap ladies are all well.
Love
Kayexxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Barton,yes,I've been given two types of anti sickness lol. The first one starts with a M.... Can't remember name ,they didn't work anyway . The next lot off GP are cyclizine,they stop me being sick but the nausea is awful .I seem to have one day feeling really awful and the next day okay and only slightly sickly. Roll on Friday when I finish this cycle. Mind next cycle could be totally different!
Huge to the cap gang,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen, so sorry you are suffering so badly! sickness is really nasty. Did your Onc.not give you anti-sickness pills along with your Cap.pills? Mine did, and anti-diarrhoea pills, too. I should ask for them next time you see him/her. I know you had a bad experience with your last hospital. Dani and Kaye (hope I'm getting the names right as I can't see anyone elses post apart from Helen's), glad you both had good holidays. The Italian one sounds fantastic! Bevlaar - hope your rash is totally healed now.  I'm feeling something of a fraud really, as apart from some episodes of diarrhoea and a sore thumb, I have been very lucky with side effects (or rather, lack of). Best wishes to all Cap.gang. Barton.x

 

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

Hi,Dani,wow your hol sounds fab ,wow must have been wonderful.
im only on my second cycle 4600mg( finish Friday)I'm feeling really sickly and have the odd day of feeling really unwell,yesterday being one of them. Today I'm okay?!
I'm having a three week break as I'll be on holiday from Saturday so I'm not sure how I'll be when I go back onto cap. I'm just hoping my markers come down like yours,wow that's a huge reduction.
Sorry I'm not much help with your question.
Huge hugs,Helen xxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Dani
Your holiday sounded lovely what memories you will always have to look back on in those not so good days. I have never had a dose reduction but have always been on 3000 and I am just on my week off I will start agin next Tuesday after seeing oncologist with results of ct scan (fingers crossed) it will be my 9th cycle and to be honest apart from sore hands and feet and towards the end of the two weeks I am very tired I have not had any sickness or feeling generally unwell. I hope you you start to feel better soon Love Macie x x

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

Hi everyone

 

Hope all are feeling well.  I haven't been on the site for a while as my partner took me on a road trip to Italy and we left on 19th August returning 4th September. We visited Venice, Lake Garda, Florence. Rome, Positano, Amalfi and Ischia.  Wish I was back there!  It was truly wonderful and to make it even better my onc agreed for me to have a break from Cape whilst I was on holiday.  I'm back on Cape (2 weeks on 1 week off) and yesterday was the first day of my week off. 

 

I wanted to know from anyone if they've had a break from Cape then back on it with side effects including nausea, diorrhea and generally feeling unwell?   Last night was a nightmare as I was woken by dreadful back pain but has since disappeared.  I spoke to my onc on the telephone and without questioning me she has booked me in for a bone scan to rule out bone mets!  My cancer markers were 1900 in April and as of 2 weeks ago were down to 392 which is amazing.  That's without being on Cape on holiday!  I have to have blood test on Friday and see my oncologist the following Monday.  If I'm feeling much better and no back pain I will ask for the bone scan to be cancelled.  I really just want to have the dosage reduced from 4000mg to say 3000mg.  Has anyone else had dosage reduced?

 

Hope to hear from you soon.

Love and light to all.

Dani

 

 

 

 

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

Morning all hope you're all doing ok.My feet and hands are quite sore today roll on Thursday for my week off.Well off to have my D injection this morning what a busy life I have .
Take are all
Love Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning cap gang,hope we are all doing okay. Had awful sickness day yesterday,anti sickness and ginger biscuits didn't help. But today I'm okay again. Very odd the way the sickness is going. Hands and feet were sore through night but have settled to a tingle.
Huge hugs ladies,Helen xxxxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Bev glad you enjoyed the meeting perhaps I will make the next one,been making the most of this weather and going to the caravan as the site shuts at end of October.Great tip from your doctor might try Vaseline,my feet are quite sore today never mind two more days and then it's my week off yippee.
Hope all you Cap ladies are doing ok.
Love
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,machine,oh I'm not sure. Ring your onc ward,they should have given you an out of hours number they will be able to advice you.
Hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cap Ladies
Can any one tell me if a low temperature is as bad as a high one, I am just on my last day of 8th cycle of cap and have had the shivers and feeling very cold have taken temp and it is exactly 35. I don't feel unwell just normal for end of cap cycle. Hope everybody is doing ok on their treatment love to all Macie x x

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

Hi,cap gang,glad you had a fab holiday Kaye . The gel socks are great,if a little cold when you first put them on!
Yes,I'm looking forward to Friday to have my week off or weeks!
Take care,huge hugs ladies,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning all you Cape ladies hope you're all doing ok.Had a lovely weekend in the caravan the weather was lovely.Weel my feet and hands are a bit sore but thanks to all your advice I seem to be managing,these gel socks certainly help with your feet .Roll on Thursday when I start my week off.
Helen hope you have a lovely time on your holidays .

Love to all you lovely ladies

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

Hi,cap gang,how's everyone doing?
Glad rash is okay Bev. I was really sickly yesterday and dog tired ,just couldn't be bothered to even move. Today I'm okay! Feeling well touch wood. Finish second cycle on Friday,then it's a three week brake because of holiday. See onc on Thursday before I go ,then I'm off ,yippee
Take care cap gang,huge hugs,Helen xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Bevlaar, glad your leg rash is on it's way out! Itching is horrible, isn't it? Hope all the Cap.gang is all OK. Barton.x

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

Hahaha barton. .. well I'm pleased to say that the fungal looking rash around my ankle is disappearing already with the canesten cream! We won't be leg twins for much longer lol!
Have good weekend everyone!
love bev xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello ladies (Cap gang!), hope everyone is fine. Bevlaar, my left leg says hello, and when can we start swapping? I also agree how difficult it is keeping track of who has said what, when you can only see the one post. I'm sure you used to be able to see all of the current page. Off to M&S for lunch now. I love their soup and the cake of the month is their Cappacino cake - fantastic! Love, Barton.x

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

Good morning cap gang.
Glad you got sorted with your rash Bev .I use Vaseline on hands too. God I had the awful diarrhoea last night thank god I had Imodium in. Hopefully I'll be okay today. Don't fancy doing sainsburys and rushing to find loo!!
Glad you had a good time at meeting.
Huge hugs cap gang,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies..bcc meetimg was very informative yesterday and got to meet Pam! Its great when you can put a face to a name. Was lovely to meet you Pam!

The nurse speaker at the meeting looked at my rash and suggested I see my gp after the meeting if poss as she thought it might be fungal.  My lovely gp managed to fit me in between appts at 5pm and yes...he agreed it was fungal and gave me some canesten hc cream.

As for the hand/foot rash with Cape,  he said to forget about paying out lots of money on branded creams, best thing is good old vaseline!!

I told him I was using it on my feet at night with a cotton sock with good results and he said "so use it on hands as well."

He is actually a dermatologist so I trust what he says! Will give it a whirl.

 

Bertie....have a lovely time catching the 

last of this lovely warm weather. 

Barton.....my right leg says hi !!

Helen....hope the weathers good for you too this weekend . Its still quite warm here.

I like the term Cap gang lol!

And hi to all the other Cap ladies as well. I cant see the other posts in this view only the last one so having a job to keep track!

love bev xxx

 

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

Hi,Bertie,have a great time in your caravan. The winter is here now in NE ,sun had gone until next year now.xxxx

Barton ,lol,yes you and bev can swap legs
Xxxxx
Hugs to the cap gang,Helen xxxxx