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Xeloda / Capecitabine - Your Top Tips, please?

Community Champion

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

London xx

Good to go for reg walks, just take it steady till you know how Cape will affect you xx

Mx
Community Champion

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

Hi Babsy

There was a virus going the rounds, sore nose, runny nose, cough etc... I had it and my immunity is up xx

Am really interested in the mushroomsxx do they taste ok?
Mx
Member

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

Sorry Moijan, havent been on for a while. Musherooms still having their effect. Had blood test today so will be interested in results as I've managed to pick up some kind of nasty virus. Started last Wednesday and I'm convinced I picked it up after oxygen therapy, perhaps the mask hadn't been properly cleaned. Haven't needed a blood transfusion either and my haemoglobin levels were low at my last test. Fingers crossed.  

Member

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

Thanks! We are getting another dog soon so I need to get this sorted! Sianx
Community Champion

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

Well done for going for a walk. Why not soak your feet in warm salt water for a while, then massage in some cream  - udderley smooth or anything mild, then put them up for the evening...if they arent red...they will surely settle downx

 

hugs, Mojanxx

Member

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

Just over a week on my first cycle and I thought I was doing well, a bit more tired than usual but okay. I went for my normal walk in the park today and my feet are now really (really) sore. Came from
Nowhere! Any suggestions as to anything that can be done. The skin is smooth, soft and normal colour. Dreading the thought that the only treatment will be a dose reduction next time round. Any thoughts?
Community Champion

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

Hello friends,

 

have nothing sensible to say today, and as you know im a bit of a prankster! So reining myself in xxxx

 

have a great weekendxx

Mx

Member

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

Hello Helen, lovely to hear from you! Also, wonderful news that you are doing so well on Cape, especially after those dire warnings from your medical "professionals"!

 

Glad it went well, George!

 

I have hospital this afternoon to pick up my next lot of pills (as long as blood ok). No clinic this time but see Onc again in 3 weeks for following cycle. I should, hopefully, have a CT scan soon (promised for after this next cycle) to see how the Christmas break has affected things.

 

Hugs and best wishes to all.

Barton.x

Member

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

Hi all cape crusaders.. I'm lurking a bit Barton so thought I'd say Hello!

George - ops are tough and you sound like you are really handling things well, rest rest rest!

Racer - crikey you've had a time of it. Last year when I was dx with mets I was really ill, we decided to get married and the onc told me to bring it forward and my gp told me stay on the oramorph after I had bad leg pain telling me I was riddled with cancer.
A year on, they are all amazed at how well I am. I am sooo much better, currently on Cape - my 3rd chemo and doing good. I wanted to say his because being in the right mental place is so important.. believing you're up for the fight and getting back on the Cape is a mental victory and this can only have a positive impact on your health. Wishing you love and continued determination! Helen x
Member

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

Thanks, Barton. It wasn't too painful. Good to get staples out. Just getting anxious as no follow up appointments have come through as yet. Will call next week if I don't hear anything. Hope you are doing well.

Hi to all other Cape Crusaders

George x
Member

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

Hello George, hope the staple removal went OK? Glad your pain is manageable, after what must have been a major op, by just taking Paracetomol!

 

Racer - hope you are doing OK. Just wanted to let you know we are all thinking of you. Post when you can, but don't worry if it's too much at the moment.

 

Hope everyone else (lurkers and all!) are doing OK. Hope that doesn't sound pushy - don't mean it to! If you can't or don't want to post, please don't think you have to. I just want you to know that we all think of the quiet ones too! Smiley LOL

 

Hugs to all. Barton.x

Member

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

Hi Moijan

Not too painful at the moment, just take a couple of paracetamol now and again. Mind you, I am not doing much. I didn't get to see a physio-would have been helpful. Hope your treatment is going well

George x
Member

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

Hello George, doing more or less ok, thanks. Have made a decision about work, but don't really want to say yet. Will let you know as soon as I can.

 

Hugs and good luck for tomorrow.

 

Hugs. Barton.x

Community Champion

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

Oh George...I quite agree with Barton....and as you know I had a hepatectomy, so my scar is very wide. One thing tho, do take it easy and do as the physio recommends...I think I may have a small hernia on my scar line....is it all very painful? I recall it being quite painful myself.

 

take care,

 

Moijanx

Member

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

Thanks, Barton. Will let you know how I get on with staple removal tomorrow. Only 28 of them 😉How are you? How is work going?
Hope everyone else doing well. At least we should have some sunshine this weekend.

George x
Member

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

Great to hear from you, george- I have been wondering how you are. I'm glad your op went well. Well done for resting! After something like that you really need to. Staples coming out shouldn't be too painful (says she who has never had them!).

 

Keep us up to date with how things are going.

 

Hugs. Barton.x

 

Ps - keep up the resting!

Member

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

Hi Barton and everyone else,

I haven't been on this thread for a while so just been trying to catch up with all messages. Good news seems to be that Cape is working.
Racer, so pleased to hear that you are out of hospital, feeling more positive and are being so well looked after by your husband - you sound like quite a team. Sending lots of positive vibes.
I have been taking it easy after having a liver resection 2 weeks ago. All seems to be going well, but I do get tired very easily. Staples coming out tomorrow. Yikes!!
Hugs

George x
Community Champion

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

And how are you too, Babsy?

 

magic mushrooms doing their thing?

hugs,

 

Moijanxx

Member

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

I agree, good to hear from you Racer, and I love your attitude. ❤

Member

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

Oh racer, so good to hear from you! I had been wondering how you were! You sound really positive. So glad you are taking control of things - good for you! You and your husband sound like a good team. Yes, eat what you fancy, rest when you need to. Get out and about when you can.

 

Wishing you all the best. Hugs. Barton.x

 

Ps- never apologise for "rambling", we are glad to hear from you.

Community Champion

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

Hi Racer,
Great to hear how well things are going! And actually , you sound as if you are in charge of your life, which is just what we should all be doing.... deciding what we want and going for it...... well done xxx

Usually a blood infusion will give you a bit more energy xx
Have pmd ux

moijanxx
Member

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

Hi everyone hope you are all having a good weekend. Just thought I would update you all . I saw Oncologistbon Thursday and my platelets were 48 . However HB dropped below 8 so had a blood transfusion on Friday which will lower platelets.
My Hubby was impressed with me as I was quite assertive regarding the cape . So had a week off and restarted cape yesterday . The good news is that the Oncologist does not need to see me for two weeks.
I have had lots of visits from professionals and one of them said I looked better than she thought I would be. Told them all that I am fighting this and not going to give in. I am having the odd rough day but trying to go out . I am struggling with my appetite and having to say I need smaller meals as I feel it is too much. Just resting when I feel tired .
I feel positive at the moment as I have read some threads which has given me hope. Trying to drink plenty of water and my Hubby sorts my meds out so we are making a good team . Sorry I am rambling on lol .
Take care everyone and big hugs xxx
Member

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

Thanks Nicky. Always good to get feedback from people who have had it. So far it actually seems more in your face as a treatment than the 2 IV chemos I've had before. But once I get used to it it will be a comfort to know I'm unlikely to lose my hair again. Sianx
Community Champion

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

Hi Sian, I agree with Barton. I was on Cape for 18 months in 2013 and had to juggle a few times with the timing of taking the tablets. A small snack eg piece of toast in the morning I'm sure would be fine. You don't have to rigidly take them 12 hours apart either, just make sure you leave at least 8 hours between the doses. If I was out for a meal in the evening (when it was difficult to control timings) I would wait until I had eaten some or all of the meal and then take the tablets, this might have been some 2 hours or so later than usual but as long as I left enough time between that dose and the morning one it never caused a problem. Equally some mornings, especially at the weekend, I didn't want to get up early to have that dose so would delay it an hour or so until I was ready! Make it work for you and then they won't govern your day to day routine.

Nicky x

Member

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

Phew! Thanks Barton!
Member

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

Hello Sian, in answer to your query, I would say yes, that should be possible. I have done it myself occasionally. It's not something I would do regularly, but I am under the impression that taking the pills at regular 12 hour intervals is important. I know you don't need much in your stomach to take the pills with - I think it is so your digestion gets going and the pills don't just sit and irritate the stomach lining.

 

Well done for starting Cape.

 

Hugs. Barton.x

Member

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

I started my first cycle of capecitabine today. So far so good. In normal circumstances while I'm at home I can see it will be straightforward to have the tablets at the same time each day, something the onc. nurse stressed I should do. But I'm hoping to still be able to go on trips where keeping to the same times may be difficult. Is it possible say to have the tablets after having a bit of food but then have the proper meal afterwards? I just want to give myself the best chance of being okay on it. Thanks all! Sian
Member

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

Hi Moijan, the name of the service is Cancer Options, consultancy, research and Coaching. 

Member

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

Thanks, Moijan - it does tend to get a little confusing with separate threads on the same subject! I never know which one to reply to!

 

Hello Angela, glad you have found us, thanks to Moijan! Congratulations on completion of your 4th cycle of Cape. Sorry you are getting nausea, and having to take anti-sickness pills. That must be a real nuisance. Sorry also that you are coughing and wheezing - hopefully your scan and results can put your mind at rest. It's a worrying time though - we all know that one! I feel for you. Please do keep in touch and let us all know how you get on.

 

Hugs. Barton.x

 

 

Member

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

Sorry I keep.starting new threads by mistake,that's me and technology not good combination 😀anyway just started 4 round on cape been better since changed my metoclopramide for cyclizine and reduced my dose slightly from 2800mg to 1500mg twice a day I was like a zombie!! Got scan in 2 weeks bit worried as I have a cough and wheezing so worried bc has spread beyond chest wall.to lungs, seeing oncologist on 5th April after scan,constantly at back of my mind what if!!! Always think the worst eh.but did enjoy that one day if warm weather even though I was at hispital most of afternoon for my check up Oh well.hugs to all xxx
Community Champion

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

Hi Barton, the lovely lady you advised about threads has begun a new Cape thread, by mistake...have just pasted in the link for this thread, as she will likely get better support on here

 

hugs, Moijanxx

Community Champion

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

Babsy...was looking, bu cant see...did you paste a lnk to the integrative oncol?

 

best wishesxxc

Moijanxx

Member

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

Well the integrative oncology service states that it helps chemotherapy do its job more effectively, helps treatment related fatigue, helps rid the body of toxins, helps the transport of nutrients to the cells and alters the bodies ph levels producing an alkalising effect on the tissues. So multi factors.  I also jump on a rebounder in five minute sessions for five minutes at least twice a day. 

Community Champion

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

Babsy,

 

can you elaborate about the hyperbaric oxygen please? I know its good for lymphoedema, why are you on it tho?

 

hugs, Mojanxx

Highlighted
Member

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

Hi Jacquie, not in the first week but then I started following the programme of supplements that I had been given in full. Currently I take Lypo-Spherical Vitamin C in the morning in a green juice mix with organic orange juice. I've also just started hyperbaric oxygen therapy this week so will be interested in the effects of that. After two sessions do feel a little more energetic, so fingers crossed . 

Member

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

Babsy - do you take the vitamin C as well as the Mico Sol?
Never thought a birthday wish list would get so medical!
Many thanks Jacquie
Member

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

Hey Racer, glad to hear that you are home. Did you see my post about the medicinal musherooms that I took to boost my platelets? There is this big study with stage IV bc patients in Spain and they have had tremendous results with them. After four days mine were boosted from 0.94 to 127 and another week after that to 154. I listed a picture of them on earlier. You can buy them from the Spanish company on label for about £57 for a month's supply. They were recommended to me by an integrative oncology service and even my normal oncologist wanted to have the name of them after seeing the results. Hugs xxx 

Community Champion

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

You are right, of course xx. Its a real shame that she doesnt get overheard by someone senior to her.

 

 

the very worst thing you could do, is to be 'So, Very Extra Sweet' to her and thank her whenever you can......

when shes being a b*t**  you could say, with a really warm smile on your face ' oh, thats so nice of you'

 

0r you could try another tack  ' are you ok?' 'i thought you were looking really anxious this morning.'

my guess is she  must have some awful problems that she deals with........, by picking on you! 

Member

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

Thanks, Moijan. Yes, I do know that, but I really don't want the hassle! I couldn't stand up to a tribunal (or whatever) and I really can't bear the thought of using time that way. I know she is very careful about what she actually says (as opposed to implies), and who she says things in front of. I only hope that if she ever ends up seriously ill (and I don't wish it on her!), she remembers, and no-one treats her like this. I know our HR lady has knocked her back a couple of times a while ago (which is why she is careful about what she says).

 

I am lucky in that I now have PIP to fall back on. I feel sorry for my friend there who still has to endure her!

 

Thanks again, Moijan, for the moral support.

 

Hugs. Barton.x

Member

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

Hello racer, so glad you have managed to get home, and that things are looking up a bit. Well done for sticking to your guns! You deserve to be allowed to stay on Cape if you wish! Sorry to hear about the breakthrough pain, but I hope you are getting on top of that again now you have your prescription meds.

 

I think it is bad the way the doctor spoke to you though - you should never be made to feel like that.

 

I bet your kids were really glad to see you home, I expect they just didn't want to overwhelm you when you first got home.

 

Hugs and best wishes,

Barton.x

Community Champion

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

Racer! well done xx

You cartainly have a strong fighting spirit and you should be proud of yourself xx

Focus upon your goals and upon living each moment to the full. We - All of us, only have the present moment, that's all there is.

Am praying you enjoy very many more 'present moments' with your family.
Keep us up to date with how the cape goes.

Much love, Moijan
Community Champion

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

Barton... as a seasoned bc lady I know you will know this.... but remember as cancer patients we have some protection in law... what the lady is doing, is actually 'constructive dismissal' which can be taken to a tribunal and if upheld, you would likely be awarded compensation!

I know that would be stressful but you could speak to hr in confidence . That lady is surely a 'dogs mother 'xx don't let her do it to youxx

Moijanxx
Member

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

Hi everyone , I got home at about 7.30 tonight . Glad to be at home. Kids are sort of happy that I am at home. They have all gone separate ways never mind lol.
Discharge from Hospital were delayed due to problems with pharmacy.
Just really tired as had to have break thru pain relief as prescription chart was at pharmacy. Nurses were not happy as I was in quite a lot of pain .
The Doc said I had to stop cape tabs and also antibiotics as no signs of infection. Also the spikes in temp due to the disease and platelets were 48 on Monday but dropped to 38. I felt that the Doc was talking to me she had written me off. I told The Doc that I am only 48 and still have fight in me . That I wanted the treatment and know it won't cure me. It buy me some time.
Anyway I am restarting cape again today and feel I am doing something positive . Trying not to stress mmm think that will be a while with the kids.
Anyway hope everyone is ok and send love / hugs to you cape crusaders .
Xxx
Member

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

Yes, she is. She is driving me to resignation almost single-handedly. Thanks for the clingfilm "image", Moijan! Unfortunately it wouldn't work - I'm liable to catch out the wrong person - it's a large, open plan office with loads of people working there, but would LOVE to see that (need a hidden camera!).

 

All the best. Barton.x

Community Champion

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

Actually Barton,

 

the " harpy" lady sounds a bit of a pain in the "bleep". Lol

 

you know what id try, if I could get away with it anonymously?  Work out what time she usually pops into the ladies..,,,nip in slightly earlier and slip a peice of cling film over the toilet bowl,( under the seat.)

works a treat!  ( apparently, its a  very insightful experience)

 

Mx

 

 

Community Champion

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

Lovely to see you Barton....the mirror thingy was a joke lol xxx

 

anybody seen the chocolate lady? Saw this and immediately thought of her....image.jpeg

Member

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

Hello Moijan, sorry you get them too! Haven't tried the mirror thing, and I'm afraid I can't try drinking from the other side of the cup in the office! Water/lemonade/coffee all over the desk! I have to keep working, as the Harpy has a full view of me at my desk and I got them probably over a dozen times today and yesterday. Thank goodness I only do two and a half days a week at work, and I'm going to give up completely soon.

 

Love the horse!

 

Hugs. Barton.x

 

Community Champion

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

Hi there Barton,i have had hiccoughs quite a bit, but not related to cape....

 

i usually try to look at myself in the mirror...have you tried that? A  Good shock can help!

 

or try to drink a cup of water from the wrong side of the cup!

 

do you like my new avatar? Its Withasmiles horse.....showing a lovely smile!

 

Moijanxx😍

Member

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

OK, Cape Crusaders, is anyone else suffering from hiccups? I keep on getting them lately, and once they start one day, they keep coming and going all day! Extremely irritating! I have read the se's on the Cape leaflet, and it is one of the slightly rarer se's. We have a particularly mean boss at work, and I have been told my hiccups "have been noticed"! You what! It's not as if I enjoy getting them!

 

Sorry - rant over. Had to get that off my chest.

 

Hugs, Barton.x

 

PS- I hope everyones se's are as mild as hiccups!

Member

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

Hello Marie, I'm sorry I didn't reply to your separate post, but as we had messaged privately about this, I was assuming you wanted someone elses opinion. You are clearly very worried about her rising tm's, but it looks to me as if her Onc isn't bothered yet. Many Oncs don't even ask for them as they say they are unreliable as an indicator. Please try not to worry unnecessarily - at her Onc meeting for the scan results, ask him/her then if they intend to do anything about the results, or what they think they mean. Ou will then get the information "from the horses mouth" as it were!

 

Wishing you and your Mum good luck and best wishes.

 

Hugs. Barton.x