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Xeloda / Capecitabine - Your Top Tips, please?

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ct scan

hi just had results from ct scan which shows lung mets stable but the scan has shown up 2 more lesions on my spine ( previous scan showed one first scan showed none) Consultant thinks that it is possibly cancer that is resolving on treatment and that is why it is showing up. Bone scan in january was clear of cancer. I have no back pain to indicate anything . For the moment onc will monitor for any changes. Has anyone else had this where lesions show up

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

hi just had results from ct scan which shows lung mets stable but the scan has shown up 2 more lesions on my spine ( previous scan showed one first scan showed none) Consultant thinks that it is possibly cancer that is resolving on treatment and that is why it is showing up. Bone scan in january was clear of cancer. I have no back pain to indicate anything . For the moment onc will monitor for any changes. Has anyone else had this where lesions show up

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

Morning Tatyana

Pleased your hair is growing well. I have long hair which upto now has not been affected by cap hopefully it stays that way. I have asked oncologist about having my eyebrows micro bladed which is similar to tattooing. Reply it will be fine to have them done so long as my neutrifils are OK. At the moment I just draw them on.

Have a good weekend.

Linda

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

Linda, my head hair is growing back, having lost it last year on fec-t. I think it's growing quite well despite the Cap. Eyebrows and lashes did come back but are looking quite thin now, I think they've given up now that I'm on cape, I'm sure it is also making other types of hair quite thin! Still, I'm very happy to have head hair!
The hand skin thing has started earlier this cycle so I'm slathering on the Udderly cream!
We all seem to get different SEs, don't we?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana

I had my first scan after starting cap after 3 treatments. Liike you I feel it is not working on bone mets as I have more pain in bones especially my hips. Did not have any before starting Cap. Although I have looked up on line regarding getting bone pain. It said 5% of people experience bone pain and joint pain. Was not mentioned to me by oncologist as one of the side effects. Probably because it is not listed as a common side effect. Same as hair loss. Lost most of my eyebrows. Pleased hair on head is still fine. Mentioned it to oncologist reply was I must be more sensitive to treatment. Have you lost any of yours?

Not long till your CT scan. Hope it is OK.

Linda

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

Hi Linda,
Yes it will be my first scan on cape, it'll be the end of cycle 3. I personally don't think it's working because my neck and shoulders are getting more and more painful. But I'll have to wait and see!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lozzer

Sorry to hear you have had such an unsettling time. I have not experienced the symptoms you describe, but I have taken a few breaks from Cape- a long break then 5 days in December due to flu/virus and 5 days in early March due to a holiday. I am sure your team will sort things out for you.
Tatanya and Lyndy, good luck with scan results. I haven't had a scan since December so think I am due one too.
Have a good week all

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

Hi Lorraine

So sorry to hear you are having a bad time if it at moment.

Unfortunately I am not much help wirh problems you are having.

Hope everything gets sorted soon so you can go back on treatment.

Linda

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

Evening tayanna

Seems like have got a very good hospital and oncologist. Don't know why it takes so long at my hospital. Have asked many times reply is it takes longer as they look at previous scans. Can't tell me it takes 5 weeks to look at scan on screen to see if there is any change. Load of rubbish.

Hopefully once summer arrives I will have more energy. Before treatment was changed in October I was able to walk at least 5 miles 2 or 3 times a week as well as fitting in going swimming twice a well. Never mind I suppose so long as treatment is going OK.

Will that be your first scan after starting cap?

Linda

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

Hi to all,

Been a bit of a week. Was just coming to the end of my third cycle of Cap and again ended up with a puffy foot and taking a big breath made me cough. Was referred by GP to hospital to check for clot. Thankfully no clot found but instead am now being referred for an echogram this Thursday to check my heart! In the meantime my treatment has been put on hold.
Has anyone else had a similar experience?
Thought it was bad enough this weekend was my CT to check if treatment was working. Now have two things to stress about.
Best wishes to you all.
Lorraine x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Sorry predictive text again should say Bartons sore fingers ..
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello nicky
As u all know I'm not a cape lady ( yet) but this cream was highly talked about on the other site and I thought it worth a mention as I have seen poor Bartons soon fingers overy the years. ..
Sometimes it's the simple products that work but I wish your daughter the best with her new job and she already has some brownie points to share with them now about its other uses .

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

Hi ladies - I'm gate crashing as well (although I always catch up with this thread as I was on Cape for quite a while back in 2013/14). Interesting about the Child's Farm cream - I'll have to let my daughter know about its other uses as she is going to be working for them soon!  She can let them know that it's as good for us BC ladies as it is for babies skin.

Hope everyone isnt suffering too much with SEs - and scanxiety.

Nicky x

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

Hi George and Linda,

 

I've got a scan scheduled for 6 April and I get the results on 11 April.  (Last time, I got the results the day after the scan, but I think that was only because my oncologist's secretary is Wonderwoman and made a few phone calls!  I can't see any reason why people should have to wait more than a week for results, but it does seem to vary from one hospital to the next.

 

Linda, I'm with you on energy levels. I'm 63 but I feel like I've aged 10 years in the past year. I do try and go for a walk most days, usually  just 25-30 minutes is enough. Yesterday we went to the Cotswold Wildlife Park and I was walking for a couple of hours in total (slowly and with tea breaks!), it was OK, but last night I was absolutely cream-crackered and I still have no energy today. I honestly think it's the cancer and/or the drugs, it's not our age! Cancer makes you do a year's worth of aging in a month, if you ask me.

 

I hope everyone is enjoying the lovely spring sunshine that we've got here today. The garden is a delight -- yes it was worth the effort of planting all those daffodils over the last couple of years!

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

Hi George

Had CT scan last Wednesday. Quite often takes up to 5 weeks for results. Which is ridiculous really. I am sure it is alot quicker if you are an in patient as they would not like to take up beds.

Yes the weather is good today. It is good that you managed a jog. Wish I had the energy. Don't know whether it is just my age 65 or the cancer I just not got much energy. You are probably alot younger than me. I used to such a keep fit person until the cancer.

I would ask if you are due a scan.

Linda

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

Hi Lyndy

Thanks for birthday wishes, looking forward to it and have lots of nice treats planned. 😊
I didn't realise you were waiting for scan results, always an anxious time. I so wish we could get them on the day or that we had a barcode that the onc could scan to see how we were getting on (in my dreams, I know). Anyway, hope you do nit have to wait too long and good luck for results.
Have a good week all. Lovely and sunny here again, even managed a jog around the park.

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

Evening George

Thank you for your reply regarding dry eyes. I will have a look at the chemist. I would rather not bother going to see GP.

I will be pleased when I have got scan results then I can relax.

Enjoy your birthday on Wednesday.

Linda

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

Hi Lyndy

I think I bought the Celluvisc. You get about 30 goals in a box and they are great for dry/sore eyes. Sure you could get them from your GP.

It has been a lovely, sunny day here .

Carolyn, thanks for the tip. The skin on my fingertips is peeling so they are a bit sore. I can live with it though. Hope things have settled for you.

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

Hi George

Pleased you. enjoyed Macbeth and meal.

Regarding eye drops did your doctor or chemo unit prescribe them for you? Or did you just buy them yourself.

My skin on hands are OK but my palms are more sensitive if water is really hot. For feet I have been using CCS foot cream if they get dry. Bottom of feet fine but a few weeks ago heals started to crack skin.

Weather has gone abit cloudy now. Suppose be going to get more snow on Thursday.

Linda

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

Hello ladies. .gatecrashing but I'm on a Facebook bc page and a lady there has found some amazing cream for her hands and feet ..it's Childs Farm baby moisture bought from Boots . It looks like a pump action pot ...says it's cured her raw feet and hands .
Within 3 or 4 days. Doesn't look like it's too expensive if its baby stuff ..so maybe worth a try if you are struggling.
Hugs ☺☺
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana

Your cookery course seems great; it sounds like you really enjoyed it and had nice food at the end of it all. Win, win😊
Hope SEs continue to be mild for you.

Enjoy the rest of the weekend

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

Hi Lyndy

Yes, I am on the same dose as you which I do find manageable. Skin on fingers is peeling so slapping on lots of cream.
I use Celluvisc for my eyes when they become sore.

Macbeth was excellent and had a lovely meal afterwards.

Nice sunny day here. Hope all other Capers are doing well😊

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

George, I hope Macbeth was wonderful, it should be, with Christopher Eccleston!

Yesterday I went on an all-day cookery course, an Xmas prezzy from hubby. I'd thought I might not make it, with one thing and another, but I got there and had a brilliant day! Thank heavens for cape, because on fec-t anything foodie would be completely wasted, but now I have my taste buds back!! Also hubby appreciated it because he got to eat a posh pud!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George

Thank you for your reply regarding how many treatments we have had. I must have just finished my 9th cycle. Time seems to have flown by.

Think you are on the same dose as me 1500mg twice a day. Side effects seem to have settled done apart from eyebrows and eyelashes are still sparce and constant watery eyes and runny nose. Will have to give the treatment you suggested a try to see whether it helps.

Enjoy play and birthday next week.

Linda

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

Hi Lyndy

Good to hear from you. I think I will be starting cycle 10 on Sunday so I am keeping my fingers crossed that Cape continues to work for as long as possible, especially as I seem to have finally managed to sort a dose that is manageable and enables me to have a good quality of life.
Macbeth with the delightful Christopher Eccleston is tomorrow, the anniversary of my diagnosis. It is my birthday next Wednesday which I am also getting excited about and the clocks go forward on Saturday-the end of this Game of Thrones winter is coming to an end, finally 😊
Have a good weekend all

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

Morning George

Really pleased cap is still working. Like you my tumour markers seem to be a good indication if treatment Is working. How many treatment have you had. I have lost track how many I have had after it was delayed for a extra week over Xmas. I know you are one treatment ahead of me.

Hope you enjoyed Macbeth.

Have a good weekend

Linda

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

Hello Tatyana, sorry I didn't reply earlier - I got an email to say there had been a reply from you, but when I looked your message wasn't showing! Then all of a sudden it appeared under George's reply, which I could see. All very strange!

 

 

Anyway, glad to hear you are doing well on Cape but sorry to hear about all your other ups and downs.

 

 

Good luck to everyone.  Hugs. Barton.x

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

Hi Barton,
Sounds like you have had a busy time. Hope things have settled down for you now. How are you finding your new chemo?
Hi Lyndy, saw onc yesterday and he said he will check TMs at next appointment and then make a judgement about a scan. Last blood results, 3 weeks ago, showed TMs were falling but I did have a short break from my treatment for my holiday so we will see. Speaking of which, I had a good break and am feeling really well at the moment. Hands and feet are dry and slight dodgy stomach, but nothing major. On Saturday it will be 3 years since my diagnosis. Off to Stratford upon Avon to see Christopher Eccleston in Macbeth😁

Have a good week all

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

Hi everyone, just checking in!

 

Barton, glad to hear your chemo is back on track, let's hope you can stay out of hospital for a while!  And Linda, nice to hear from you. I love the idea of the "cap crusader"!

 

I've just finished my second cycle, still hardly any SEs. I did have some very dry skin on my hands and the skin felt tight, I don't think I'd even have noticed, only it was in the exact same place where I had severe hand-and-foot on docetaxel, so I knew the signs. Lots of udderly cream, a little bit of flaky skin but nothing worrying. did have a trip to A&E mid-cycle with a cough and temperature, ended up with IV antibiotics, but blood results were good, no neutropenia, so they sent me home with oral antibiotics. Felt better after a couple of days. Honestly, it was hay fever, it always attacks me suddenly at this time of year and it's just like having the flu. But as my Dad was in hospital with the flu at that time, and I'd been visiting him... But I didn't have flu and I didn't have an infection. Hooray!

 

Saw the oncologist today, and as my SEs are minimal, he's keeping me on max dose for another cycle, then we'll do a CT scan to see if it's working. Scary! But for now, I'm doing fine.

 

Love and hugs to everyone.

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

Hello all. Just dropping in to wish you all the best. I hope any se's are mild or non-existant.

I hadn't meant to desert you all, but I have had a busy time with quite a lot of hospital visits. Nothing too serious - 2 bags of fluid over 2 days because of high calcium levels, then 2 bags of blood for anaemia, and then a CT scan. No chemo for me last week, but they gave it to me yesterday, so hopefully things are back on track.

 

 

George, I have been wondering how you are, too.

 

Hugs and best wishes to everyone.

 

Barton.x

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

Afternoon all cap crusaders

Just wondering how everyone is getting on with this treatment.

George

Have you had your CT scan as you had your last one same date as me 4 Dec? As far as I can remember you are one treatment ahead of me.

Hope everyone is doing OK.

Linda


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

Moijan - sounds awful. Am glad you caught it in time xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

No, it was a complete surprise and afterwards, I read up about the antiemetic I’d been given to take. Chlorperperazine, that lists side effects as possible dvt, as does Cape.

 

So I’d been using the antiemetic a lot at the high dose I’d been given.....I’d also been lying around on my bed more as my first cycle was pretty awful, and the dvt happened quite quickly at the time, just after that first cycle. Got a swollen ankle on the one which never was normally swollen, showed the onc, who dismissed it as both ankles were swollen. 

 

Two days later my leg swelled from ankle to knee....saw gp who got me an immediate appt at the hospital, where ultrasound showed three clots, two behiind upper calf, one higher up in leg.

 

was lucky to have been picked up as was driving to and from uni, sitting at a pc for long periods, and really it could have been a lot worse if. Clot had travelled.

 

hugs,

 

Moijanxx

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

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

Miojan, never had spoot face when I was younger luckily. Have some strange smelling cream to apply! Did you have any other symptoms for dvt alart from puffy feet and were both feet puffy?

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

So glad not a dvt. Does having a spotty face make you feel young again? Lol

 

sorry, very bad taste xx

M

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

Moijan - i spoke to Chemo Nurse when collecting my third lot of tablets who didnt seem overly concerned about my puffy feet or the rash I now have on my face. Went to Drs yesterday as feet were worse and after examinaton was told is water retention so gave me Furosemide for a week snd cream for my face. She did not think was DVT.
Not a good look spotty face and puffy feet.
Hello to all you other ladies out there. Hope you are doing well. Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Lozzer, I got a dvt on Cape, was sitting at a pc too much at uni....anyway started with a puffy ankle and onc dismissed it....a week later whole leg below knee was swollen...gp sent me for ultrasound and had three dvts...do not ignore the puffiness just in case...get it checked out.

 

Moijanxx

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

Well done Lindy, hope you are getting them in futurexx

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

Miojan - funny you should say that! My hands the last few days have been drier than they were and my toe feels sore I have actually tonight been looking up side effects and was in two minds about continuing with B6 I also have a puffy ankle. Was not sure if was B6 or Cape as am also now off steroids. Am back on Thursday to get tabs for third cycle so will ask nurses. Consultant was quite quick to put me on B6 as hands werent that bad when I showed him!
Regards, Lorraine
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening Moijan

A while ago I mentioned about letters to GP and scan results. Spoke to oncologist today about them and she actually showed me the last report and the last letter which was sent to GP. Felt happier once seeing things in writing.

She also mentioned I am now due next CT scan. Comes around quick.

Hope you are feeling alot better now.

Hope all the other cap ladies are doing OK.

Linda

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

LozzerI ASKED FOR B6, BUT MY ONC SAID THEY USED TO PRESCRIBE IT, BUT FOUND THAT IT WORSENED PERIPHERAL NEUROPATHY1 sorry for caps this iPad drives me crazy

 

Moijan🤗

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

Good luck Barton with the start of your new treatment.
Tatyana glad you are doing ok and good luck with your second cycle. I am just ahead of you and have finished second cycle and starting free week and like you am lucky as mostly just tired. Hands dry so oncologist has given ne B6 tabs. Think I have read on thread that others have had B6.
Weather here is bad have never seen so much snow here in Carlisle! Stay safe everyone and keep warm. Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Tatyana, thanks for your good wishes. So glad you are not suffering se's. Good luck for your 2nd cycle. No, not been out in it at all - staying indoors with the heaters on! I hope everyone else is keeping warm and safe. Wrap up well if you have to go out, but stay in if you don't.

Hugs. Barton.x

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

Hi Barton, just popping in to wish you good luck with your new chemo!
And hi everyone. I've now started my second cycle of cape, my blood results after round one were excellent and I wasn't bothered by SEs except some tiredness, so I'm continuing with the full dose. I'm pleased about that! I do have tender swollen glands in the neck but the oncologist examined me carefully and didn't think it was anything to worry about. I'll take that!
Ct scan after round three. But I'm not going to worry about that yet!
Hope everyone who has snow is managing to keep warm and that nobody's travel plans have been disrupted. It looks pretty here and isn't deep yet, but boy is it cold!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi, BARTON, GOOD STUFF, WELL DONE...AM LOOKING FORWARD TO BEING POST PORT INSERTIONi would have had Chemo the nex6 day, having slept with the needle in...if I too hadn’t opted for my week offxx

 

do keep in touch

 

Mx

 

 

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

Hello Linda, thanks for thinking of me. No, not started treatment yet but had portacath inserted yesterday. Rather sore at the moment, but nothing that a couple of paracetomols can't handle - just for a nights sleep - don't need them today. My Onc wanted the port insertion to settle a bit before starting the chemo, so I have a weeks grace - 1st one next Tuesday and weekly for 5 more after that. Will be reviewed after that and might go on to IV Vinorelbine.

Hope you and everyone else is doing ok.

Hugs. Barton x

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

Morning Moijan

Hope you are feeling alot better now.

Linda

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

Morning Barton

Just wondering whether you have started your treatment yet? If you have hope it is going well.

Linda

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

 

 

 

“Of all the places, I  would love to be....🎻🎼

the very last....would be iA+E” tra, la,   (or almost the very last)

 

Mx