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Xeloda / Capecitabine - Your Top Tips, please?

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

Hi Everyone - Happy Friday!
I have just started Cycle two and cycle one seemed to go ok apart from a bit of nausea and stomach cramps at beginning of my free week. I do have a question for anyone who like me is on Cap and Denosamub. On my previous treatment I had Denosamub every four weeks. On starting Cap was told I would have Denosamub every six weeks. When collected chemo tabs yesterday was told I have Denosamub still at four weeks. Just wondering how this goes for anyone else who on Denosamub?
George - Thanks for your response and I hope you have a fab time in Portugal. I love the idea of "CAN". X
Nicky08 - Sorry to hear you are starting new treatment and I hope you cope well on that. Glad youhad a nice break in Portugal. X
We used to love our holidays in Cyprus, Italy and Tenerife but have not been abroad for a while now. Have had some nice breaks last year in the UK though.
Tatyana - Hope you are coping well on cycle one and are not suffering too many side effects. X
Best wishes to everyone.
Lorraine xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening Moijan

Thank you for your reply regarding tumour markers. Never thought they can be affected by stress. Hope your treatment is going well. Have they said how many chemo you are going to get?

I don't know whether you found whilst on Cap tablets it affected your memory at all it certainly has with me. Some days it is hard to remember the simplest thing. Pleased I am now retired because I don't think I would be any good at work.

Have a good weekend.

Linda

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

Evening George

Thank you so much for your kind words. If I remember correctly you are one dose ahead of me. I am not back to see oncologist until 5 March I will certainly ask about when I am going to get next scan.

Bet you are getting excited about holiday. Weather has got to be better than it is here.

Linda

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

Hi Lindy, not sure what mine are just now, however, looking back to 2016, when I had a bereavement,mine made a definite rise to over 1000 and the rise and fall drew a picture of the amount of stress I was under...amazing how they responded, so currently try, try,try to keep my stress under control, but it’s not easy.

 

Moijanx

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

Hi Lyndy

It is good news that your tumour markers have halved since October, that is a big drop. My oncologist says he goes on trends rather than numbers so, in my case, when the markers were falling, he felt it was okay to assume the treatment was working. My TMs went up to over 1, 000 when I was on the E+E combo, but they remained at about 500 all the time I was on Taxol. They have been falling while I have been on Cape. However, I do want to stress that my onc does not go on TMs for all his patients but, as I have said before, mine seem super sensitive/reliable. Think I will be having a scan soon which, in my opinion, will give me the best indication of how things are.
Hope this helps. Easy for me to say, but try not to worry too much about TMs life is stressful enough with all the hospital appointments, etc.

Have a good weekend

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

Hi all you cap ladies

Went to chemo unit today to collect cap tablets. Neutrifils were fine asked about tumour markers. Got a shock before oncologist changed treatment from e/e combo they had risen to a 1000. In January they had gone down to 560 which in my opinion are still really high. When got diagnosed back in 2009 with breast cancer and bone mets tumour markers were just over 200. After treatment they went down to 15 stayed that way for over 4 years.

George I know you get yours checked regularly as yours are very sensitive to whether treatment is working or not.

If you don't mind me asking do you know what yours are now?

Linda

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

Morning George

I have put on one stone since October. Normally I do eat quite abit anyway. Even when I go on holiday abroad fully inclusive I usually put on about 3lbs over a fortnight that is why I am sure it's the tablets. It is normally hubby which puts on weight easily not me.

Have a good weekend. It will not be long for you to go on holiday. Enjoy

Linda

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

Hi Lyndy

I have put weight on since being on Cape, but expect that is down to the fact I am eating too much😉
Hope SEs are better now you are on a reduced dose.

Have a good week.

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

Hi cap ladies

Has anyone had a problem with weight gain whilst on Cap. Weight seems to be going up at about 3 pound a day. Went on Google seemingly 5% of people can have weight gain I seem to be getting all the rare side effects. Bummer. Will mention it when I go to chemo unit tomorrow.

Hope everyone is doing OK

Linda

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

Hi Nicky

Thanks for your detailed reply. Like you, since I was diagnosed with sbc, I only travel in Europe. I have been naughty the last few times and just travelled with my EHIC card ( am not advocating this, by the way, just hate being ripped off by extortionate insurance companies). Will check out Eurotunnel.

Thanks again.

Have a good week 🤗
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George

I currently have an annual policy (Europe) with Eurotunnel however as my condition is not stable as such at the moment I'm not sure it would have covered me if I'd had a problem whilst away. I do have a general travel insurance policy through my bank which I can fall back on for issues such as delayed luggage/lost luggage and any other health problem (not linked to my SBC) plus I carry the EHIC which would cover me for emergency health problems. Whenever I have been in this position, several times before when I'm waiting for treatments to change and/or know of slight progression, I've stuck to mainland Europe knowing I can get back home should it be needed.  We (hubby and I) also book flights etc that we can cancel at the last minute (using avios) and hotels that also are cancellable.  This has taken the pressure off us (about making holiday bookings that we may not be able to get the money back for should we have to cancel at the last minute) as well as giving us the chance to look, and book, ahead and hope that we can go on the holiday.  Eurotunnel are incredibly cheap and don't penalise you for having a pre exisiting condition.  You can make you own decision about whether you are happy that you meet their travel criteria by downloading their T's & C's which are on their website.  You can get single trip insurance or annual if you meet the criteria (which I think you do btw).

Happy hols (in a few weeks) and Seville is lovely, if you go on that tour.

Nicky x

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

Hi Nicky,

Forgot to ask, who did you get your travel insurance with? Hope you don't mind me asking.

Have a good week all

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

Thanks, Lyndy. Hope your eyes are feeling a bit better. I was joking with my oncologist last week that, if I ever go on Mastermind, my speciality subject will be chemo and its side effects. Think over the years I have had most, including the bizarre ones. 😉On the plus side, I have usually found a remedy and have my medical 'bag of tricks'

Have good day.

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

Hi Nicky

Welcome to the Pollyanna club😂😉Glad you had a good time in Lisbon. I think a change of scenery should be prescribed on the NHS ( doubt that will happen). We are going to Vilamoura and hoping to take a coach from Faro to Seville for a few days. Got 2 weeks to finalise our plans but, especially with this disease, often do things last minute.
Sorry you have had another change to your treatment plan; it is all very unsettling. However, it sounds like you have an excellent team who are looking after you. I hope all goes to plan for you. Keep us posted.

Have a good week all

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

Hi Janie, just wondered if you have, or are still planning to speak with Chris Woollams? I too can recommend doing so. From what you’ve said you know about his books, magazine etc, but as you were asking about the ‘Daily Dozen’ list and interested in nutrition, are you aware of Michael Greger? If not his book ‘How Not To Die’ (the book is an easy read, unlike the title!) and website ‘nutritionfacts.org are also excellent and cover all illnesses, not just cancer. I have a spare copy if you are interested, and don’t have it, as I bought one and then was given one as a gift, more than happy to mail it to you if so. Best, Kxx

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

Hi George/Pollyanna 😉

What a great way of looking at things. I also abide by similar ‘rules’ and have just come back from 4 nights in Portugal! We went to Lisbon and had a fab time, away from all this cr@p, especially as I’m due to have another treatment change and know from this week on it will be several hospital/oncology appointments for some time until things are decided. I’m having a deja vu moment as this happened pretty much at precisely the same time last year. We’ll see what the outcome is but I also get thrown a few curve balls so I’m not second guessing this time.

Hope everyone is coping well on Cape, it really is a very doable chemo and far less intrusive than most treatments, especially other chemos.

Nicky x

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

Hi George

Enjoy holiday in Portugal. thanks for info regarding problem with eyes.

Linda

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

Hi Tatyana and Barton

Thanks for your good wishes, looking forward to a bit of warmth and sunshine. We are going for 6 days which will be nice. Might have to take Cape tablets with me as there is a little overlap between week off and starting cycle 9 or I might get a few extra days off. Will see what onc says.
Pleased you are feeling encouraged, Tatyana. At the risk of sounding like a 'Pollyanna', I tell myself the first three letters of this awful disease spell CAN so I always ask myself whether I can do something or not. If the answer is yes, I get on with it. At times, the answer is no, or medical team advise against it; however, despite being on my fourth line of treatment in 3 years, I do feel I am living with the disease at the moment so I tend to make the most of things. Sure cancer will throw me another curve ball, as mine tends to do, so keen to get on with things. Anyway, monologue over😂
Enjoy the rest of the weekend all.

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

Hello George - I hope you have a wonderful holiday in Portugal!

 

Hugs to all. Barton.x

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

Hi George, great to hear you are off to Portugal soon. Have a fab time!
For newbies like me, it's wonderful to hear about you guys getting on with your lives and doing fun things. Keep it coming!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lozzer and Tatyana, good to hear you are coping well with Cape; it is a manageable chemo once you get into a routine. I had a scan after 3 months and scan results were positive: one liver lesion had disappeared and the other one had shrunk. However, like you, I was very anxious whilst waiting for scan results and had convinced myself it wouldn't work. I too had tried Exemestane which didn't work for me; however, as with most things, it is trial and error trying to find the 'right' treatment. I have now started cycle 8 and my TMs continue to fall so I intend to make the most of the time I have on Cape while it is still working. We are off to Portugal in 2 weeks. 😊
Lyndy, my eyes are sometimes sore so I use celluvisc eye drops to soothe my eyes and alleviate any discomfort.

Have a good weekend all🤗

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

Now, I was only off it three weeks....however Barton has had a few chemo breaks without bc getting resistant...we are all different....however, I my bc seems sneakier than some...so not really looking for breaks....just do long as it works.....have not been Ned yet!

 

much love

 

Moijanxx

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

Hi Moijan

Pleased taxol is going OK. You mention cap only failed when you had break. Were you off it long before you were told treatment had failed. Can't remember how long you were on it. For some reason my memory seems to be abit effected by this treatment. I used have a good memory before all these treatments. Pleased I don't work now think I would find it difficult to do. I did work all the time when on e/e combo.

Have a good weekend.

Linda

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

No, I didn’t, which isnt surprising as my eyes are pretty dry.

 

taxol is a unique journey Linda-thank you for asking....it’s currently do able, but I reminisce fondly about my life on Capexxx

 

tho, I had a rough start with it. It only failed whe I had a chemo break...

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

Hi everyone

I have just finished cycle 6 of cap been OK. Like Moijan I am definitely more short tempered on week off tablets.

Moijan did you have constant watery eyes and runny nose which is very annoying. If you did what advise can you give me.

Moijan hope your new treatment is going OK.

Linda




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

Hello everyone...I just recalled recently that I used to get a bit ratty during week three on Cape, and also on Eribulin....just thought I’d mention that..,we are all different, but it might be helpful to know.

 

have a great weekend. We had a smattering of snow on wed in the southeast, but hopefully we sent it far far away.xx

 

Moijanxx🤗🦋💖

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

Hi Lorraine, belated happy birthday, glad you enjoyed it and were spoilt, that's what birthdays are for!
I start my first cycle of cape today so it's great to hear you are doing well so far. I hope it will turn out to be ok even after you have finally come off the steroids!
You're so right about the waiting. I'm on the same plan as you, see how it goes and then do a scan after 3 or 4 cycles. Fingers crossed that it does a good job for us both!
All the best to you and the other lovely people who provide so much encouragement and advice, it really helps!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks everyone for your birthday wishes I had lovely day and was spoilt rotten. Just finished first Cap cycle and am on free week which I am looking forward to not having a set regime for taking tablets. Seem fine so far just fatigue. Still think symptoms may be masked by steroids which am now being gradually weaned off. Saw oncologist ths week and then again in three weeks.. He said would have scan between cycles 3 and 4 to see if Cap is working. That is the hardest part the waiting and hoping. I was on Emamastane for 3 months but that did not work for me at all and mets in liver had progressed. Time will tell just need to suck it and see😀. Am still slowly working my way through threads but all I read helps me so much.
Wishing all of you lovely ladies a happy and pain free weekend. Xx Lorraine
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Pan, I drink kefir every day, although I’m only on Letrozole I did have a problem with an open wound in my mouth and never encountered any problems whatsoever, infact it was when I started taking kefir that my problem eased and I never got another infection in my mouth. I don’t buy it though, I make my own which is really simple and easy to do. I’ve read a lot about it, and attended a study day at Together Against Cancer where I was shown how to make it, and have never read or been told that it shouldn’t be taken with Chemo but would advise you do a quick google search, lots of info from various cancer websites will come up, or as Barton said contact someone from your health care team. Also a website victoriahealth.com has a pharmacist who writes about all sorts of health issues and he has written several articles about immune health and pre/probiotics and I haven’t seen anything there about not taking with chemo. I’ve spoken to him several times about various supplements I take and trust me he is very thorough. Hope this helps, Kxx

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

Hello Lozzer, hope you have had a lovely day today!

 

Sorry, Pan - haven't meant to ignore you. To be honest though, my only answer can be that I have no idea! All I can tell you is that I eat live yoghurt and as far as I can tell, have suffered no ill effects.. I know that's not much help, but I can only suggest you speak to your medical team. Then make up your own mind.

 

Hugs to all. Barton.x

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

Lozzer Hope the birthday is exquisite 

 

love Moijanx

 

im unsure about the kefir/yoghurts and mouth cuts situ....I have been drinking kefir whilst on chemo.xx

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

Happy birthday, Lozzer, enjoy. 🎂🎂😊
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Happy birthday Lozzer
Hope you find you can reduce the steroids comfortably. They were initially helpful to me but it was good to come off them
P x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Kefir and yogurt are full of bacteria which are good once they get into the intestines. How do you get the bacteria into your intestine? You drink it. So the bacteria goes down your throat.
Question. Can the bacteria in kefir and yogurt get into cuts in the mouth or upper digestive tract on its way downstairs? On chemotherapy?
Pan

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

Thanks Phoebe4 and Moijan and hello to everyone.

Nearly at end of cycle 1 week 2 and am feeling ok. Just get a bit tired. Saw oncologist today who said steroids are to blame for not sleeping great. He has suggested reducing them over next three weeks and then stop which will be good. Just hope pain doesn't return in liver area. Also said scan in March to check if working. On the upside it is my birthday tomorrow. Some people hate birthdays I cherish every one!
Best wishes to you all. Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Do check with onc, but I heard kefir was a little safer due to a larger variety of helpful bacteria...but check with onc, mine is happy,for me to take kefir but the hosp pharmacists aren’t! Lots of different views on this

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

I wonder if it's wise to take kefir or live yogurt when on Capecitabine. These things are full of bacteria. Any comments please?

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

Will do, have to be a little bit later this am tho, will pm it to you...yes I think it’s a bit of a lot to get in as meant to be grazing! But small things one at a timexx

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

That’s really interesting Moijan - I love mushrooms too, I eat a lot of them but will try to have them more often now. That daily dozen is great to put on the fridge door , especially for my daughter! I’m not sure about 3 portions of beans for me though !! Hope you don’t mind me asking but would you mind taking another pic of it so I can print it out ? I tried but it’s a bit squinty and I couldn’t read the top ! I’m definitely going to speak to Chris there’s really nothing to lose except if he says I should do something too complicated as I already spend a lot of time cooking and just keeping myself as fit as possible! Thanks
Janiexxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Definitely a good option, he gave me loads of stuff to think about and I’m slipping things into my diet when I can, obviously the rainbow stuff, but he said a cup and a half of ordinary button mushrooms daily, which put me over the moon...I love mushrooms....loads of guidance in the daily snail the other day which repeats just what Chris has been saying for years......actually these snippets do summarise a lot of what he told me...but there was a load more just for me.as we are all different.xx And some things can affect the drugs we are on, so good to check with the onc first...I think some things can affect the antioestrogens mds, like tamoxifen, letro, and of course my delicious taxol! but actually a mixed diet shouldn’t be a problem 

 

 

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

Lozzer, So have I too, I did manage a bit better last night on half a lorazepam tablet! Yes the steroids are quite disruptive.  Hop you get a better night tonight...to be honest I do have extra naps when sleep is grim....also more important to eat plenty, carbs help.....bananas , I’m told can help too.

 

Moijanx

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

Hi Moijan
Did you have a personnal prescription chat with Chris ? I have been following his advice as well as others and wondered whether I should go for it . Would you recommend ?
Janiex
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lozzer
I couldn't sleep at all on dexomethazone. Managed to wean off it and I'm sleeping much better xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Miojan, thank you for your reply. Have now started my second week on Cap and so far seem fine. Did stop anti-sickness tablet and no problems. Only thing am finding is getting a good night's sleep. Not sure that might be more the steroids I am on for my liver. Seeing oncologist on Tuesday for follow up so will see what he says.

Wishing everyone a lovely weekend.xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you for the tips Janie, Chris told me I could have a small slice of unpasteurised cheese, but I’m guessing after tax finishes....he’s really helpful isn’t he..had a three hour chat with him a few weeks back.

 

ive been eating kefir as my bloods were fine, but now on Cipro for a week..blasted uti...hate Cipro.

have you seen m+s nourish bowls? I love the avocado and egg one.....can’t find out if any milk in it...it’s not listed, but you cant always be sure.xx

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

Hi Tatiana
I have also eaten all those things that they tell you not to eat ! When I was on Paclitaxel the chemo nurse was horrified when I told her I was making a hot shellfish platter for a special dinner !i wasn’t given specific info when starting Cape so assume they aren’t so worried about infection/bacteria.
I am a chef but also studied human nutrition and have a great interest in food as medicine .
I follow a meat and dairy free Mediterranean diet (Chris Woolams) and i am sure it has kept me in better health. I still eat fish and occasionally have a little unpasteurised goats cheese( it’s good for the gut bacteria )
I think if you have always eaten certain foods you would probably be okay to carry on when on chemo . But it’s perhaps not the time to start eating raw oysters etc !
Hope you are all doing ok
Jane x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Cycle 7 🙄
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all

Won't repeat excellent advice, just to say I generally eat what I want to on Cape. I tend to avoid hot/ spicy food but only because I don't want to risk 'an episode'🙄I also avoid grapefruit as I don't like it.
Just completed cycle of Cape, seeing onc on Tuesday when I will get results of last two blood tests so fingers crossed. Feeling fine at the moment and have re-started couch to 5k. Doubt I will make it to the end, but giving it a go😊
Have a good weekend all

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

Mohan should have been Moijan, sorry! Predictive text, grrr!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Mohan, Linda and Barton, thanks! I think I'll just eat whatever I feel like, except grapefruit which everyone seems to agree is best avoided. My hubby has to avoid it anyway as he's on statins and it's a thing-- it increases the effects! So it's been an occasional treat for me but we don't tend to have it in the house.
I do think your body tells you what it needs, to some extent. Except when I was on docetaxel it seemed to be telling me not to eat anything, as it all tasted horrible! Glad that's in the past.

Funny old voyage of discovery, this, innit?!