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Xeloda / Capecitabine - Your Top Tips, please?

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

Babsy, any word on the mushrooms?

 

keep well!

 

hugs,

 

Moijan😍

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

Hi there Racer
So sorry you are going through it xx
Rest assured the physicians will know what to do....., bloods are very crucial in their decision making. I keep reminding myself, ( myself,!) that oncs are very specialised physicians, not just cancer specialists...... I go to mine with all sorts of queries ( you'd be surprised) and as you know the treatment for pneumonia is often the same as for a chest infection xxx

Try to keep your spirits up as high as your sense of humour! Which is refreshing.........


I have said before, the word palliative feels scary, but these ladies are pretty good with pain control ( perhaps I'll ask one about my knees!) and if we are not in pain, we are better able to focus upon being strong against all the stuff we have to deal with XX

Much love and hugs.... keep in touch xx
moijanxx💖

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

Hi everyone , still in Hospital. Feeling better than I did. Changed antibiotic on Friday . Still on some oxygen and had to have platelet transfusion yesterday. I have had one Doc say pneumonia and another chest infection. They are trying to get on top of bloods. I don't think they know what to do and just treating symptoms as they happen. Just tired.
Palliative nurse has seen me and changing pain relief .
Hopefully I will be home soon . Family are missing me and I am missing home too. Keep you posted .
Hope everyone is ok and tests/appts go well. Xxxc

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

Hello Helen, I'm not a breakfast person, and generally hate eating first thing in the morning, so I tend to keep it minimal. I change between a yoghurt, or a choc chip muffin, and have tried digestive biscuits (about 3), Cheddars, Jacobs Cream Crackers - anything really. It's a chore for me to find something to eat to take the pills with. Oh, one I quite like is the Rachael's cream rice puddings from Sainsburys. I get the impression there isn't really a minimum - I think it just needs something to get your stomach working so they just don't sit there.

 

Hope that helps.

 

Hugs. Barton.x

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

Well someone says that they were advised that a sandwich is fine. I should think that a bowl of cereal or a couple of pieces of toast is enough. That's the kind of thing that I eat and have been ok. 

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

What does everyone eat for breakfast?! 

We know we have to take the cape within 30 mins of eating but I really struggle with wanting anything to eat in the mornings. Has anyone every been advised on what is enough?

 

A piece of toast? A bowl of Alpen? A piece of fruit?

Does that do the job do you think? Just one of those I mean, not all 3! 

Helen xxx

 

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

It's not my normal oncology team who have given me the additional advice but a private service which was paid for me by a charity.  I'll let you know how I get on and pass on any advice, even though it is addressed at my personal needs. My regular oncologist wanted to know the name of the mushrooms so if I can spread the work within the NHS that's got to be a good thing. 

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

Oh racer, you poor thing! You are having a tough time. In a way I'm glad you are still in hospital, because they are obviously looking after you well. I hope you feel better soon. As Moijan says, I expect ypur Onc is staying away to give you a chance to get over the pneumonia - it wouldn't be fair to load you down with too much right now.

 

George - I hope your pre-op goes OK today. And, I'm sure you will, but I hope you have a wonderful time in Portugal and come home well rested.

 

Hugs to all. Barton.x

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

Hello Racer, you are having a tough time xx

 

Are they giving you physio?  Do drink buckets of water.....to flush out the bugs and the antibiotics can dehydrate us xx

 

sorry you are getting rib pain...yes the nerves around there serve several systems so maybe it is the pneumonia.......And id agree with you...the onc likely thinks ' lets deal with the pneumonia first' as that can floor you, as you are finding out xx

 

keep us posted...we are here xx

 

Moijan💝💝💝

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

Hi racer

 

Glad things seem to be settling for you, but it certainly sounds like you have had a challenging week. You are right to want to remain in hospital, not somewhere any of us want to be, but at least you know you are being well looked after. Perhaps the delay in seeing your onc is for the best. I can only cope with one thing at a time and, at least when you see him, you should be feeling better and ready for the next treatment (it never ends, does it?) Anyway, hope you get a good night's sleep tonight and at least you have escaped storm Doris (not much consolation, I  know)

 

Welcome Babsy, good to hear that your team are looking after you and successfully  trying new treatments which have sorted your bloods. I was on Cape for 6 months and am having a little break now

 

Barton, I have  been on 3 hormone treatments: Tamoxifen, Arimidex and Exemestene. Think onc going to put me back on Tamoxifen as the other two seemed to stop working for me. Lots of trial and error as you know.

 

Right, I am signing off for a few days as me and hubby are taking a mini break to Portugal: Saturday until Thursday. I have a few days grace then it will be my op, depending on availability of HDU bed (I wish I hadn't watched Hospital on BBC2 as I have convinced myself they won't have a bed for me ) Oh well, going for pre-op tomorrow. The fun just doesn't stop.  

 

Hope storm Doris has clamed down in your areas. Have a good weekend all 🙂

 

George x

 

 

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

Aah thanks everyone. I had to have two more units of blood last night. I have had ultra sound on legs and ct scan to check for blood clots. Good news no evidence of clots. But I have Pneumonia in lower left lung and fluid. May have to have fluid drained if it had increased. Monitoring bloods and may need further transfusion .
Good half term but at least I know what we are dealing with and have been on antibiotics since Monday night.
Still feel slightly out of breath when mobilising short distances but hopefully on right track to get stronger.
We have said no point going home until it is fixed.

Just feel let down that my Onc has not seen me and moved review to next Thursday. Perhaps there was nothing else they can do at mo and being treated for main problem at mo.
I had a rough night and needed Oramorph a couple of times. I was restless with neck and rib. The rib discomfort obviously due to the pneumonia .

Anyway hope everyone is ok and not been blown around too much by Storm Doris. Sending hugs to everyone xxxxx

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

Hello Babsy glad you are more or less ok on Cape, apart from your blood count, but glad that has improved for you. I'm glad your medical team is looking after you so well - they seem to be on the ball. Let us know how you get on, won't you?

 

Hugs. Barton.x

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

Hi everyone, I usually post on bone mets forum but have just finished round 4 of Cape. Was extremely tired during round 1 but had an easy ride on cycles 2/3, but cycle 4 wiped me of my feet. As my bone marrow is compromised I have the added problem with blood counts. Cape is working, alongside other stuff and my lymph nodes are back to normal so I'm pleased with that. I was fortunate to have a consultation with an integrative oncology service who when looking at my medical notes made some more suggestions of what to run alongside Cape. One of the things I've taken is a medicinal mushroom extract from Agaricus Blazei. Within four days my platelets went from 0.94 to 127. Apparently they've had great success in Spanish hospitals with it having brilliant and quick results with blood platelet levels. I was told to take 2 a days. 

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

Hello George, yes, I have had hormone treatment in the past. I was on Anastrazole after my original IV chemo and rads, and stayed on that until the Secondaries were diagnosed. Then was on Cape. It worked so well after 10 cycles, that they took me off that and I was on Exemestane for a few months, before bone mets diagnosed. I have been told that I am only very weakly hormone receptive now, so not quite sure where that leaves me.

 

Have you had hormone therapy?

 

Hugs. Barton.x

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

Oh Dear Helen and Barton, 

 

this alcohol risk seems to come up every so often....like everyone else, I enjoy a drink, especially when Im out in company.

 

however, we should remnd ourselves of the risks.....sad tho it is, alcohol is a risk factor for bc...and Breast Cancer Care have put out bulletins such as this one..

 

http://www.breastcancer.org/risk/factors/alcohol

 

My own understanding s that alcohol is full of sugar, which bc cells love to bits. That alcohol can make tamoxifen ineffective and can increase oestrogen levels.......

 

i will still have the odd drink...but we cant hide our heads in the sand!

 

Moijan😈

 

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

Hi Barton

 

My my onc is also reluctant to give too many scans so understandable he is waiting until after your third cycle of Cape. Enjoy your remaining free week I am  sure your bloods will benefit from the break. Can you have a hormone treatment? 

Hi Helen, glad Cape is working for you. I had a dose reduction after cycle 6 which helped enormously although side effects were not that bad, but it is all relative I suppose. Regarding alcohol, I was never told not to drink it was just that I lost my sense of taste so wine tasted like vinegar, not very nice. Fortunately, taste buds are back to normal and I am enjoying the odd glass or two of wine:-) 

Have a good week all

 

George 

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

Hello Helen, glad you are doing well on Cape. I'm glad your hands are OK, but shame about your feet. I have had peripheral nueropathy since 2011 when I had my original IV chemo. The Cape definitely doesn't help either. Yes, the effects are cumulative, aren't they?

 

No idea why you can't have alcohol - it's never been a problem for me as I don't drink (just don't like it!). Is it worth asking your Onc at your next visit?

 

Hugs and best wishes to all. Barton.x

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

Hello george, re your query - I had either 8 or 9 weeks off over Christmas, then one Cape cycle, then the second one since restarting was cancelled, so I recovered quite quickly after the one cycle. Onc next Thursday, and, hopefully, my blood will be OK, so should restart next week. I was told I couldn't have another CT scan until I had done 3 cycles back on Cape, so that has been delayed too. To drink, I have bought some Soda water to try, but haven't tried it yet.

 

Wow - Portugal! I hope you have a wonderful time.

 

Hugs. Barton.x

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

Hi all, racer you are having a tough time! We have to manage and get on don't we! It's hard for our loved ones who just want to help and get us better.

I'm lucky that Cape is suiting me apart from the fatigue which is getting worse each clue - just finished no.5 - mind whizzes thru wondering if it's worth it but YES I tell myself, it is worth it.

Luckily no peeling hand sir feet so far but feet really tingle and hurt when in them too long due to peripheral neuropathy, I think that's my Achilles heel, so to speak!

Ref drinking alcohol.. I have alcohol most weekends.. several g and t and glass or wine. Can someone remind me why we shouldn't?! Is it cos it reduces effect of chemo or cos might make us sick?

Best wishes Cape crusaders.. let's keep our spirits up 😁 Helen xxx

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

How long has your Cape break been, Barton? I have been chemo free for 5 weeks now and, I agree, while you  are on chemo you do learn to adapt/live with side effects but, once you come off it, you realise how rubbish it actually is. However, I am not moaning as it has done its job for me for nearly 2 years now. Long may it continue for all of us. I am making the most of my 'free' time as I know I will feel poorly  after op, but it will be worth it (fingers crossed). Off to Portugal on Saturday, until Thursday although doubt I will get insurance so will make sure I don't take part in any adventure sports (as if!!). 

Let us know how you get on when you see your onc, Barton. Sure uggers will have been behaving. Hope you have found a drink that you enjoy

 

Hugs 

 

George x 

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

Great to hear from you, George! So glad you are feeling well on your Cape break - I'm with you there. You don't really realise how cr*P you feel until you start feeling better. I definitely have more energy now, but of course worried about what the little *uggers are doing in there! Probably having a field-day!

 

Glad you said when your op is - I keep forgetting! Please do keep in touch and let us know how you are doing.

 

Racer - take it easy as much as you can (probably very difficult with young children). Glad you managed to enjoy your night in the posh hotel, even though you couldn't enjoy a special breakfast. Hope they let you out of hospital soon, but not before you are comfortable again.

 

Hugs to all. Barton.x

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

Hi racer

 

sorry to hear you  have been having such a rough time with your bloods. Hopefully, thinks will settle down soon and they will finalise a plan. I know it must be very frustrating. Pleased to hear you got to stay in a posh hotel; important to treat ourselves while we can. 

Barton, hope you get things sorted too so you can restart Cape again. Regarding drinks, I tend to drink fizzy water with a slice of lemon as I find it very refreshing.(I have to admit, I am partial to a glass of red wine now I am on a chemo break. Needs must ). Looks like op going ahead 2 weeks today, depending on availability of HDU bed. Yikes. Making the most of being chemo free, feels good to get my body back if only for a short time.

Hope all goes well with treatments. 

 

George

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

Aah thanks Barton . Just hoping they can fix these problems and I can get on some regular treatment. Think there will be a few questions on Thursday my Hubby wants to complain .I just don't want to waste my energy and get stressed.
We did manage to stay in posh hotel . My youngest was too excited so was a bit of handful but it was nice. I like my cooked breakfast but could not face it especially with having such a dry mouth. Just NHS are under slit of pressure and never stop working. They are looking after me. My Hubby is getting annoyed as my Consultant not been to me but I said Doctors on the Ward here are treating my symptoms and won't answer questions about treatment plan.
I am sure there will be a plan . I am giving them a headache at least in right place . Don't want you worrying as you are going thru iit as well. On the plus side I have my own room that is ensuite ok not posh but it is private .I am not googling about my symptoms just staying focused . I will keep you updated .

Xxxxxx

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

Good to hear from you, racer, but so sorry you have been feeling so unwell. Another night in hospital - you poor thing. I hope they are looking after you properly. Sorry you had to wait so long for a bed.

 

Such a shame about your 2 days in Somerset - I bet you were looking forward to those. I hope you managed to get your night in the posh hotel, as you don't say.

 

Glad I'm not the only one struggling with what to drink. I can drink milk, as long as it is either really cold or really hot - can't drink it in the inbetween temperatures though (I know, I'm really odd!). I like hot chocolate, but of course that has way too much sugar, so have to limit myself to one every few days. Oh well, back to the water. Actually, I don't drink that "straight" - I add a tiny bit of lemonade, which flavours it a bit without adding too much sugar or artificial sweeteners. That is quite refreshing.

 

I do hope you are put of hospital soon, and that they sort your blood out for you - my problems are nothing compared to yours.

 

Hugs and good luck. Barton.x

 

 

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

Hi Barton It has been quiet on thread whether people are away. I know what you mean about drinks I ran out of ideas. Seem to go thru phases on different drinks. It is mainly soft fuzzy drinks, ginger ale, had pineapple juice but was worried about the acid with my teeth, statrted to drink ice cold milk which has helped . Just get fed up with water. I think it is mainly the taste in your mouth and does not always quench your thirst . Sorry about your med it is so frustrating . At least we can support each other. Come on stamp those feet not too hard lol x
I have been quiet as I have not been well. I had a stiff neck for over 10 days and still need some help getting out of bed. I felt that stoned on Thursday as I was advised to double my Oramorph and also taking paracetamol and mst tablets which has helped some. Review last week not to start Cape but gave me a a small dose of vincristine to nudge platelet rate .
We had booked a night away in a posh hotel for the night on Sunday and then we were going to have a couple of nights in Somerset. Just wanted some sea air and let the kids go on the beach. My hubby thought I was short of breath on Sat/Sun but thought I would be ok. Got up yesterday and I was so out of breath just walking across the bedroom. Luckily we were only 45 mins away from our local Hospital but Ocology unit had no beds and had to go to a and e. Got a bed 13.5 hours later on Oncology . That is another story but the ado for and Consultant on a and e were brilliant I had chest x ray and ct scan to rule out a blood clot. Checked my neck and back which Onc did not do on Thursday .Think I need tests on my heart due to fast heart rate. They said HB had dropped so two units of blood transfused overnight and may need a further two. Just think Oncology are struggling with me and wonder if I need to go to another Oncology unit. Feel rally fed up as had to cancel Somerset but I might have been more unwell .
So staying in Hospital another night whilst they decide how to treat me. Trying not to worry but hubby is stressing me out as he is so worried .
I am just awkward lol always have been. Just have to face each hurdle. Sending hugs and positive vibes to you Barton and hope everyone is ok xxxx

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

Hope you are OK, racer. You have been silent for nearly a week.

 

This thread has been very quiet recently.

 

I'm still off Cape at the moment due to the high Creatinine in my blood at the last test. See Onc next Thursday. Have been drinking like mad (no, not alcohol!) to try to help, but to be honest, get so sick of coffee and water. It's difficult to think of different things to drink that doesn't have sugar in it (don't take sugar in coffee or tea). Anything that flavours water has sugar (or worse, those artificial sweeteners) in it. Have thought of lemon, but the acid attacks your teeth! Tried tonic water (for night cramps really), and liked it, but when I researched what can cause high Creatinine levels, quinine came up! I'm feeling like I just can't win! Can anyone suggest anything?

 

Hugs, Barton.x

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

Thank s Barton . Will try and get extra pillows. Using hot water bottles as well which eases it a bit. Keep Hoping I will be able to put some positive news on. Just keep on falling asleep when I have had painkillers . Hugs to you xxxx

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

Oh racer, so sorry to hear you are suffering so much! Re sleeping in your bed - have you tried sleeping sitting up, propped up by a load of pillows? That is what I have to do when my back is really bad - it really helps. It might take a night or two to get used to, but I found it so much easier for getting in and out of bed for the loo, etc.

 

I hope you manage to sort out your bloods, etc, for the chemo next week. I know how frustrating it is being in a kind of limbo, with nothing happening. Your mind goes to all sorts of dark places. Try to stay calm, and think positive thoughts.

 

Hugs. Barton.x

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

Thanks Barton yes it was frightening with the blood. I have been for oncology review today . Platelets are 20 and is concerned about them . He said it was not y platelets but the transfusion . So I had vincristine to nudge my platelets. He sad bloods were not very good and it is difficult t manage . Had a really bad week with pain in my neck and left leg /hip.. I slept on settee for 3 nights. Tried my bed last night which I slept but Could not get out of bed this morning so Hubby helped.I had to double my oramorph so felt very hungover. Onc didn't examine me. He said could be the bone marrow as capectabine as I had full dosage which has depleted platelets. So no Chemo this week and look at a reduced rate next week possibly . My ankles are very swollen too but due to anaemia . I thought I might have had a scan or x ray on my neck but Oncologist did not seem too worried. We are so frustrated at the moment as not able to do anything..Hubby is worn out due to lack of sleep . We feel perhaps certain information is being kept back ?
Hopefully going to try to go away for a couple of nights locally so kids can have a swim and I can rest.. Alsobchange of scenery . so fingers crossed everyone xxx

Hugs to everyone and hope everyone is ok xxx

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

Oh racer, I'm so sorry to read about your hospital visit, and bringing up blood - that must have been very frightening. I hope they have sorted you out now, though.

 

I hope you feel better soon. Good luck with the antibiotics - hopefully they will head off any infection.

 

Hugs. Barton.x

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

Hi Moijan thank you . My oh has ordered me a special pillow for between my legs to see if it helps. Anything is worth a try .
Waiting for Occupational Therapist to do home visit so hoping they have some ideas. Think painkillers are kicking in now. Just can't do anything which impacts on the family especially the kids as they get bored. So use to me running around.
Oh well another week and kids are off the following week so trying to arrange a few things .
Hugs to you all xx

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

Hi Racer,

 

poor thing! Glad they sorted you with antibios tho.

 

does it help to sleep with a pillow between your knees? I find that helpful. My chiro told me to do that and havent had sciatice since. But your pains poss have a different cause.

 

 

Sorry you have bern having a rotten time, love, Moijan🛌💊.    🎀

 

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

Hi everyone hope you all having a good weekend. I had a trip to the Hospital yesterday as I had brought a small amount of blood up. Had blood tests and my platelets ate 19 but decided to give me another unit of platelets. Also think I am brewing an infection so on antibiotics for a week.
Cannot fault the care and they are being cautious. Review on Thursday.
Just want nice weather as in pain with my hips and have slept in a funny position and my neck is aching. So full of painkillers and hot water bottles, I don't feel like doing much at the moment. Hopefully will feel better tomorrow.
Big hugs to everyone xxx

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

Hi ladies, especially all those struggling at the moment. I keep an eye on this thread, having been on Cape/Xeloda in 2013 to offer any advice. I saw that Bousy is now coming off Cape, I'm sorry it hasn't worked for you but there are other treatments available. You mentioned eribulin and couldn't find a current thread. There is one, but it's hidden in the Living with Secondary BC section rather than this treatments section. Also, as it has been mispelt  (Erubulin) it wouldn't come up on any searches. I've bumped it up for you, hopefully you will find some useful info there.

Nicky X 

Ps also found this other thread in the Treatments section which I've now bumped up as well x

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

Hi all, sorry to hear you are having a challenging time at the moment. It is worrying to have to change treatments/take a break. I am on a Cape break at the moment as I wait to hear whether I am eligible for an op. Phoned hospital today for scan results, but nurse said they hadn't been read and, even if they had, she wouldn't give them to me so more waiting.
Racer, stamp you feet and put your pjs on- sure delivery man will have seen far worse.
Bousy, sorry to hear your news. I have had chemos fail on me and it is a blow. Fingers crossed for your new treatment. I am sure there is a thread on eribulin as I have read posts from women who are currently on it.
Barton, hope your creatinin levels drop.

Best wishes and cyber hugs to all

George x



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

Hello Bousy - you are, of course, welcome to stay with us as well! I'm not trying to get rid of you! We are all always here for you as well. Please do keep in touch.

 

Thanks for your good wishes.

 

Hugs. Barton.x

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

Thanks Barton. Hope everything goes well for you. Have looked for threads but none current. Will keep on bone mets thread. 

 

Liz x

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

Aah thanks Barton I will do. Hope you go on ok. I will stamp my feet for you x
Thinking of you too Liz xx
Had transfusion so need to behave self . Mind you the Nurse said that my temp was going high grrrr! It always happens when my oh is on nights. He has had to tell them he can't go in just in case I am unwell.
Just want put my pjs on but groceries are being delivered so dont want to scare the driver !
Hugs to everyone xxxx

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

Hello racer, sorry to read you are still having problems with your bloods. I'm with you today - I had Onc appointment this afternoon, only to be told that my Createnin level has shot up (is usually always fairly high, but has gone up to 162 this time). I had to stay for a bag of IV fluids, and Cape has been held off for 3 weeks. I will also have to have an Ultra Sound on my kidneys before then.

 

Good luck for the Cape next week - hope your platelets improve. I expect the transfusion will make you feel better too.

 

You stamp your feet if you need to!

 

Hugs. Barton.x

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

Hello Bousy, so sorry to read that Cape hasn't worked for you. Wishing you good luck with your new treatment. Sorry, I can't help with advice on Eribulin as I haven't had it, but I'm sure someone will be along shortly to help. There is probably a thread to read for advice, etc.

 

Hugs and best wishes.

Barton.x

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

Hi Everyone, 

Been to see oncologist today to see if cape is working for me after 5 cycles.

Not good news I'm afraid. TM has gone up again. The tumour on my liver has grown from 21mm to 39 mm. The one on my lung only grown 1mm. Bones are quite stable with denosumab.

 

So I'm off cape and trying Faslodex hormone injections for 3 months to see if that works followed by another CT scan. If that doesn't work then going on Eribulin. Anyone any advice on eribulin?

 

Thought I would be on docataxel but they think that could have caused my perforated bowel last March.

 

Really hope this works.

 

Liz x

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

Hi everyone, been for review at Hospital today . My HB is ok from blood transfusion but my platelets have dropped to 12. I knew the platelets were not going to be good but trying not to worry. So I have got to have a platelet transfusion later. Cannot start Cape this week so that will be two weeks not on med.
I feel a bit down about it as feel my options are becoming less. Just hoping that either the Cape works or there is some medicine out there that can stabilise me. Feel like stamping my feet . That might help me feel better.
Has anyone else been the same ?
Big hugs everyone xxx

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

I agree, Moijan, chronic is much better to hear than palliative or some of the other adjectives that are used to describe us. Words are so important. I also like the slogan 'secondary, not second rate'.
Good to hear you are doing so well on Cape, Sandra; it does seem to be an effective chemo.

Have a good week all 😊

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

Hello Sandra, so glad to hear you are feeling so much better on Cape! You have had such a good result so quickly! I hope you continue to improve. I'm also glad you feel so well on the Cape, but please be prepared (lots of hand and foot moisturisers) for the possibilty of sore hands and feet. Everyone is different, so hopefully you will be OK.

 

Hugs. Barton.x

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

Hi Sandra,

 

well done...an excellent positive approach...was wondering about your onc, they all have their own way of dealing with cancer patients and of course.......we...with metastases, find the word palliative hard to deal with as it is avery scary wordxxx

 

 I was chatting to an onc nurse at a different centre recently and she referred to us( metastatic ladies ) as palliative during our conversation...I mentioned. that my hospital refer to our stage of illness as

'chronic cancer', which, of course, it is...and for me, I find it so helpful to think of it that way....xx 

 

Sandra, doctors dont always use the best words.....But you have every right to all the information about your care, and if you feel you need to change......then you have a right to make that choice xxx 

 

Enjoy the fact that the Cape seems to be working, Long may it continue xx

hugs, Moijanxx💚💚💚

 

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

Thanks everyone. Have a good weekend xxx

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

Hi, I started my first course of cap 11 days ago, and apart from feeling a bit nauseous I feel great, in fact better than I have done for a few months.  The lymph nodes in  my neck have all gone down, although i can still feel them, and I no longer feel like somebody is trying to strangle me! My breathing has improoved and i was able to join in the singing at Church last week, somthing that i had struggled to do when i was there a few weeks ago. I am amazed at how quickly the cap has worked especially as my oncologists, who is still not giving us much information, asked me if i would prefer to be passed on to the palliative care team rather than start chemo.  I am due to see him again on the 15th, which is a bit longer in between chemo than the week, and if he still doesn't provide us with the information we have asked for I am going to ask to change onc.

 

I hope everyone else who is on cap is getting on ok an i hope you have a good weekend.

 

Hugs Sandra

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

Yes Racer, well done...have a good weekend.......and eat/drink frequent smaller meals, if not that hungery xxx

 

Moijanxx💖😎💖

 

 

 

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

Hi racer

Good news that you feel you are getting in to a routine and, you are right, these things take time. Our bodies are dealing with the illness and very strong medication; it all takes its toll. Hopefully, after the transfusion and a week off Cape things will settle for you. I am off Cape at the moment and do feel better for it. Your 'buddy' sounds like an excellent idea, one which will give you some extra time to do nice things with your children. Have a good weekend 😊

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

Thanks Moijan and everyone. Been for review . As expected my platelets have dropped from 39 to 24 which is still not good but not as bad. They are concerned about my HB as that has dropped further. So blood transfusion tomorrow and stop cape for a week with a view to start for a week again.Oncologist thinks the Meds are doing something but small and agreed with us that we need to give it some time rather than keep moving treatments. Oncologist said usually see some results after a month. He seemed slightly happier but we know the transfusion will deplete some of the platelets by next week. So not stressing as I know these things can take time.
I have had people stopping me and saying I look well. My hubby said I look pale /yellowy . But I feel ok at mo just slightly out of breath when moving and blurred vision when looking in the distance I told Oncologistband wants me to get eye test first rather than refer me to a Specialist straightaway as it might just be glasses I need.
So review again next week . Start getting into a routine.
Just going to concentrate on other things if I can . My Daughter needs a dress so I am hoping to take her to a retail park so I haven't got to walk too far and my son has got something on at my local Church as he is in the air cadets. So that should distract me .
Hope everyone is ok and hugs xxxx