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Xeloda / Capecitabine - Your Top Tips, please?

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

Evening ladies

Thank you all for your help regarding scans and scan reports.

Moijan sorry to hear you have had to go to A&E again. Hope it was nothing to serious.

Linda

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

Hello everybody. Wishing everyone with scans coming up, or waiting for results, good luck. I, too, am supposed to be having a CT scan soon in order to get a baseline for the new chemo. The dye is called Contrast, and, I think, is iodine. You have to tell them if you have an allergy to iodine.

 

Thank you all, again, for your best wishes.

 

Hugs. Barton.x

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

Lorraine, I also have only ever had CT scans with dye. I don't know if I should ask for an MRI, at this stage I think they might say it would make no difference to the treatment anyway so there's no point. But it is worrying how different hospitals have different policies, isn't it?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good Morning Linda,

 

Can I share some experience regarding the scan report. This was happened in July last year, lymphoma nurse refered me back to GP bacause I had serve pain in my arm for long time and I have been taken strong pain killers. Then I had a CT scan and Pet scan(with dye,may be worng name) I was in Emergency by accident due to I nearly fell when I I had the biopsy. They insisted to keep me in hospital for one night. The doctor and oncologist came to see me. I was confused so I was brave enough to ask the scan report, the doctor said: 'we are not suppose to give you the report, but you asked so he printed 2 pages out of 9 pages. I hope this experience will help.

 

Thank you all your  brave ladies share  precious experiences here.

Good Luck with eneryone. 

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

Oops pressed wrong button and sent blank post lol!
Morning Everyone,
Barton - just want to say how sorry I am Cape has stopped working for you. The fact it did for a few years gives inspiration to me as a newbie. I wish you well with your new chemo and the hope side effects are manageable. Change is always a shock but we seem to find strengh to just get on and take whatever comes as what choice do we have. Thanks for all of your support and let us know how you get on. X
Miojan - good luck with your port. X
George - enjoy your hols.X
Tatyana - glad you are coping ok, as am I. X
Best wishes to everyone else. Xx
I have now read through all of this thread and found it very helpful. One thing I did wonder is about scans. I have only ever had CT scans with dye but see that some of you have MRIs. I did ask oncologist why and response was CT was best for me. Now I have liver mets I am not confident that is the case. Sometimes it seems it is all about cost and it does make you feel like secondry - second rate. Maybe I am just over thinking things. Different hospitals seem to have different ways.
Regards to all. Xx
Lorraine
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Re: Xeloda / Capecitabine - Your Top Tips, please?

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

Hi Lindy, 

 

i expect (hope ) something else might be offered, but my cells keep changing their dna...am now waiting for that  wonder drug which is targeted at us mets Ladies....the one which is supposed to remove something from our bodies, .....chemo brain today and had a visit to a+E,  thankfully not too long a visit this time.

 

love and 🤗 

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

Morning Moijan

Thank you for your advice regarding letters and scan reports. I will ask when I go to oncologist if O don't get them then I will write a formal letter.

I did not realise you have not got any choices left apart from taxol. Did oncologist say that to you? Must have come as abit of a shock. I always thought there was lots of different treatment.

Take care of yourself.

Linda

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

BARTON, very best wishes for your next chemo, whichever it is.   I hadn’t got a choice really, only taxol or not....but sometimes that’s the way of things.

 

keep us in the loop sweetie....there we are, BARTON, Nicky and I, we should start a new thread called 

 

‘new adventure down the chemo route!  Would be a new venture....I’ll see what comes upxxx

 

Moijan🤗🤗🤗🤗

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

Linda,

 

write formally, but politely and explain that you would like copies of all your gp letters as previously requested. If you write then they will have to give them to you. Otherwise, you could ask your gp to print them off...this is all your right, they must give them to you. And when you go, take an advocate who can act as a witness.

 

lindy, it may not feel like it, but you are in charge of your care...and you have as we all do...a right to copies of anything. The tumour markers are not always relevant, I’ll be getting mine..but onc has warned me they will rise at first. So not to worry. You can also have copies of your blood results. So ask away.

 

Mx

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

Thank you both - Nicky and George - for your very kind wishes. I promise to keep in touch, and hopefully post good news on a separate thread (which I might need to start as it doesn't seem to be a common chemo for secondaries) re Doxorubicin in case it helps someone else re se's etc.

Please have a really good holiday, George - I'm sure you will. Should hopefully be a bit warmer for you! Please do PM me and keep in touch.

Hugs. Barton.x

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

Hi Barton, sorry to hear you have to change treatments. I do hope that the fact it has worked for so long has given you some comfort. It is an anxious time when you have to change treatments, but it sounds like you have a good team who know what will work for you. Do keep us posted regarding how you are getting on as we will miss you from this site; your wise words, encouragement and support have been invaluable.
Nicky, hope you get a plan in place soon. The waiting can be so stressful.
Moijan, I had a portacath inserted 3 years ago and just go every month now to get it flushed. Best decision I made. Most of the time, I forget it is there and it has never caused me any discomfort at
all. I know a lot of hospitals don't use them due to the cost.
Tatyana, glad to hear you are managing well on Cape and side effects are minimal.
Off on hols Tuesday so have good weekend all.
Will PM you now and again Barton if that is okay to hear your news.

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

Hi Barton

Sorry to hear that Cape has stopped being effective for you.  It's a good chemo that does give many months, or years, of stability to so many ladies who are on it.  With your experience of the regime and the SEs I'm sure you will continue to pop in on thus thread, just as I have done some 3 years after finishing Cape.  It's always good to share what you know especially to newly diagnosed secondary ladies (and gents).

I hope the new chemo/s are kind to you and they sort out the little uggers. I have found it very unnerving when I change treatments as its a case of better the devil you know!  Take time to settle in and share any info you have, Vinorelbine has been mentioned as a chemo I would have but it's not something I'll be starting just yet - I think (still waiting for The Plan!)

Moijan - the port should give you so much less stress and pain once its in place, I know they can be used almost on the day they are fitted.  It is so much quicker for the nurses as well, they prefer them almost as much as us patients do as they no longer have to hunt-the-vein.  Just relax when it's done, they will probably give you a sedative unless you are having it done under GA (which isnt very common). A bit of bruising afterwards but it should be good to go.  A long time ago there were discussions about having numbing cream to apply before its used each time but I've never needed it and I don't think many of us do (correct me if I'm wrong, please).  You'll get used to the access procedure so you can keep a check on anyone doing anything differently especially regarding risk of infection.

Hi to everyone else on Cape, or other treatments, hope things are going well and SEs noit causing too many problems.

Nicky x

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

Hello Kate, Linda, Phoebe and Tatyana. Thank you all so much for your kind words. You have all been just as much support to each other and everyone - just a bit newer to the thread Smiley Very Happy. I'm sure you will all continue to be (as well as everyone else who posts on this thread and others).

 

I'm sorry to be leaving you, but, as I said, I will look in on you - help when I can, and to make sure you are all behaving yourselves Smiley LOL

 

Hugs and best wishes. Barton.x

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

Morning Barton

So sorry to hear cap has stopped working for you. You were such a good support when I first started on cap. Yet again your oncologist seems to be on the ball. They have taken notice when tumour markers has risen.

I am seeing on oncologist on 5 March I have quite a few questions to ask them. Example don't get any copies of letters or scan reports. Why nobody took any action when all last year my rumour markers were rising at alarming rate. Told at time they were only a guideline and scans were more important.

Good luck with your new treatment.

If I ever have to hve chemo again I would definitely have portacath fitted as veins are shot.


Take care.

Linda

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

Barton, sorry to hear you've been hit by another of those curved balls. You'd think you'd get used to them, but you never do. I hope the new drug will be doable and that it will work well for you.
Thanks for your amazing support and encouragement on the Cape thread, it's been invaluable for me as a cape novice. I've just finished my first two weeks and have had hardly any SEs so far, I'm feeling a bit lacking in energy Today but it's hard to know how much of that is an SE and how much is the cumulative effect of the emotional strain. But on the whole I'm feeling pretty good, and that is at least partly thanks to all the kindness and practical advice that I've found here. Thanks Barton and the rest of the gang!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton
This really is a roller coaster of a journey we are on. I can totally relate to your experience of trying to prepare for the next step only to find the plan has changed! I think that is what I find most difficult when I attend clinic ....they invariably throw a curved ball at you and you have to emotionally 'regroup' at speed!
Its good to hear there's another treatment options for you but tough, as you say, anticipating how it will be.
I do hope everything goes well and the side effects are manageable. Do let us know how you get on well will be thinking of you
Phoebe x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Very sorry to read you’re having to change your treatment Barton. Hope the new one works well for you, and is kind to you. Best wishes, Kxx

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

Thank you Moijan and Bon for your best wishes. A bit nerve-wracking, getting used to a whole new set of se's, but it has to be done.

Moijan, don't worry about the Portacath - it's a doddle. The worst thing is getting the local injections before they start - they sting quite a bit.

Hugs to all. Barton x.

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

Oh Barton, so sorry to hear that Cape is no longer working for you. You have been an inspiration to so many over the past 3 years and have helped so much. All the best on your new chemo.

love Bon xx

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

Oh, Barton, so sorry it has stopped working for youxx must be quite a shock after all that timexx

 

goodluck on the new drug I too am having a portocath fitted, on my next week off. Let usknow how it goes,

everyone tells me that their port insertion was the best thing they ever did. Met a lady today having her first chemo the day after her port insertion...she said it hadn’t hurt at allxx

 

love and hugs,

 

Moijan🤗

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

Just a short note to let everyone know that I saw my Onc this afternoon and was told my run on Cape is over after 3.5years. My TM's have been rising quite steeply recently and I have been told it has stopped working (had worked that out for myself Smiley Happy). I had been researching Vinorelbine, as last time I saw Onc (different one), I was told it would probably be Vin. However, I was told today I would be having weekly IV doses of Doxorubicin for 6 weeks, then probably Vin)- but no idea how often. I am having a portacath fitted next Tuesday, then first dose of Doxo the following week.

 

Anyway, I wish all of you long and successful runs on Cape, and I'll keep an eye on the thread, and help if I can.

 

Hugs and best wishes. Barton.x

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

Evening Moijan

Your oncologist seems to have everything in hand. Hope your hand settles down.

I have been alot better since dose was reduced. Thank you for asking.

Back at oncologist for my 2 monthly appointment on 5 March. Will be asking then when my next CT scan is. Had last one on 4 December. Mine don't to seem to be as regular as yours.

Take care.

Linda

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

Thank you BARTON, sat with fingers in bag of frozen peas...but a bit more unpleasant than cold cap, so was being rather inconsistent.

 

lovely nurses. As always...having port inserted on my week offX

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

Hello Lindyloo xx

 

have three monthly whole body mris now so one due in about 8 weeks.

 

how are you, tho?

 

moijan

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

Afternoon Moijan

Hope you receive an appointment through soon for a MRI also hope you are feeling better now.

Linda

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

My onc was lovely....and has agreed not to increase my does until my mri

xx

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

Sorry to hear you are suffering, Moijan. Hope you get some answers and relief. Re the port - I had one in 2011 for my original chemo, and it was fantastically easy. In my opinion, much better than a PICC, although I have never had one of those (they sound like a nuisance to me!).

 

Hope everyone else is doing OK.

 

Hugs to all. Barton.x

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

Have an appt with onc tomorrow....but saw nurse spec today about a port.

 

my onc knows about the sore fingers and he will shortly know about all the other bits and peices on my growing list XX

 

Mxx

 

hope you are ok?

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

Morning Moijan

Sorry to hear you are not feeling too well. Hope.tiu start to feel better soon. Have you rang chemo unit to let them know how you feel.

Take care of yourself.

Linda

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

Actually, for some reason am feeling less well today...sore fingers feet and nauseous.

 

moijanxx

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

Morning Moijan

Thank you for your reply regarding memory loss. That's was good attending university same time as on cap. Don't think I could.

Least you know how many treatments you are going to have so you count down to end. Pleased you are not feeling too bad at moment on it.

Had a good weekend thank you hope you have.

Linda

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

Well, actually Lindy, don’t think I did Have memory probs, as was at university the whole time, but did get a bit low in mood and kept getting cellulitis. I found I was pretty sensitive as well.

 

my treatment, well at leat 5 morecycles and maybe 2 after that.

 

hope you are having a great weekendxxx

 

Moijan😎

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

Interesting responses on Denosamub timings. Annoyingly having checked again oncologist has decided to keep me on four weekly injections for now which now means more visits to GP for blood test beforehand and then hospital one week for chemo tabs and again the following week for injection. The joys!
Thanks for comments and best wishes all. Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Kate stable at the moment!
All the best to you too x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Phoebe, my primary has never been found, last time I said this it was suggested to me that I didn’t have cancer, if only! So will say they are 99.999% sure it’s breast due to my lymph node biopsy, and I have mets in my upper spine, talking to my Onc they don’t seem to do TM’s but I wondered if that was for certain types/stages of cancer and what the reasons are for doing/not doing them? Liver function tests make sense but don’t know if that eliminates reason to do TM’s too or not. Hope your liver function results are good, Best, Kxx

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

I was wondering about that too Kate as TMs have never been mentioned to me; they tend to look at my liver function tests instead.

Phoebe x

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

Does anyone know if there’s a protocol to follow re tumour markers? Only I believe some Onc’s don’t do them, don’t think mine does, so wondered why? Thanks

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

Evening Barton

Thank you for your reply regarding tumour markers. Hope when you go next week to get bloods done they have not risen too much. What I find strange hospitals carry out the tumour marker test but when they do rise they are not acted it upon. I have questioned the oncologist many times over last year when mine started to rise. Reply is always the same unless they go up dramatically they do not investigate further.

Have a good weekend everyone.

Linda

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

Evening Nicky

Thank you for your reply regarding memory loss. I did realise it is Fec in tablet form. Now it all makes sense. Had same problem back in 2009 whilst on it hair loss constant watery eyes and runny nose. I am certainly going to mention all the side effects I am having when I see oncologist.

Hope MRI results are OK. Enjoy time off chemo.. I found I felt much more normal when I had break between combo and going on cap.

Hope treatment gets sorted soon.

Linda

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

Hi Linda, Barton and anyone else with chemo brain!

If I remember correctly (ha ha, is that possible as a fellow sufferer?) capecitabine is changed into the chemo drug 5FU when it enters the blood, after being ingested. 5FU is the ‘F’ element in FEC and is known to cause memory problems, or at least studies have shown that it does. It’s not surprising if, like me, you have had both FEC and capecitabine that your memory is not as sharp. Obviously we are also aging so there will be an element of this as well especially if you are in your 50s, 60’s or 70’s. Having said that I think my memory is better than my husband’s who has the attention span of a goldfish and no excuses. I have always told my daughters, even when I was in my 30s and 40s, to write things down as they would inevitably tell me something that I was meant to remember just when I was in the middle of doing something else as I would forget things - but that comes of being a multi-tasking female.

Linda,  no set plan yet for treatment, MRI is still not reported but I did have a second opinion this week so we will see what comes from that. Although it’s probably doing me no good at all it is nice to be off chemo as I had been on one sort or another for the last few years. I’m still taking the exemestane and enjoying a bit of time away from hospitals and blood tests to be honest!

Nicky x

Ps edited this reply once I re read it and realised it didn’t make complete sense. Can’t believe it that there were that many typos or autocorrections

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

Hi Lozzer, just to add to what Nicky and Lindy have said...when I had problems with my jaw after some dental work I had to have done, I had to stop Denosumab for a while. My Onc explained to me that it stays in your system a long time and had said to me previously not to worry if I missed a month. Think it is often prescribed to fit in with other treatment, and probably like to give it on a regular cycle wether that’s 4 or 6 weekly.Kxx

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

Hello Tatyana, glad to hear you are feeling ok after your first cycle - long may it continue!

 

Re the Denosumab discussion - I have my jab 6weekly as it fits in with the Cape cycles. I wasn't actually offered 4 weekly, but as it would mean extra visits to the hosp, wouldn't want that anyway.

 

Lindy, re Tm's - mine originally stayed around the mid twenties when I first started Cape, then they stayed steady for a while around the mid 30's, but have been creeping up a lot recently. The last time they were done (5 weeks ago - due to be done again on Tuesdays blood test for Onc visit on Thursday), they were 166. That is the highest they have ever been. Like George, my TM's are quite a good indication of how things are going (it isn't for a lot of people).

 

You also ask about memory problems on Cape. I have noticed my memory is a lot worse the last few years. I think it is more a combination of my previous IV chemos (FEC-T) in 2011, Cape and getting older. I find the problem being rather annoying when everyone else says I am wrong about stuff when I know I am remebering correctly and they are wrong (not everyones memory is perfect, although I have one particular friend who thinks hers is Smiley LOL) - they just assume it is me who is mistaken!

 

George - enjoy your Hol - I expect you are beginning to get excited now.

 

Hugs to all. Barton.x

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

Hi George, don’t know if you’re familiar with Manchester but can recommend Mackie Mayor in the northern quarter if you haven’t already decided where you’re going for the rest of your weekend. It’s different food stalls under one roof in one of the old Smithfield market buildings, there’s all types of food and if there’s a group of you can order from different places and eat togther, like motorway services but it, and the food, are nothing like that!!! They do a good roast on Sundays too!

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

Hi all

Good to catch up with all your news and great to hear SEs do not seem too bad. I am on cycle 8 now, reduced dose, but seem to be getting along okay. I have even started a jogging programme. ( don't think I will be running any marathons any time soon).
Lorraine, I have Denosumab every 4 weeks, but onc said I could have it every 6 weeks if I wanted. I keep to 4 weeks as it fits in with my monthly portacath flush.
Yes, Lyndy, the countdown begins: only 10 days until my hols😊In Manchester this weekend to meet up with some friends. We are going to Jamie Oliver's restaurant this evening.

Have good weekend all

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

Hi Lorraine, glad cape is being kind to you so far. I've just finished my first week of tablets and haven't really had any side effects so far, so fingers crossed! I have been quite tired but that's probably more to do with the general emotional stress of the new situation and also rushing around madly seeing friends and doing fun things!
It's a lovely morning here and we've just been for a walk on the downs. Stunning.
Have a good weekend everyone!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Nicky

Do you know what treatment you are going to be put on now?

Linda

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

Morning Lorraine

Just reiterate what Nicky as said I used to be on 4 weekly Denosbab but when treatment changed in October it waa changed to 6 weekly. What was said at the time that it would make any difference it just means it saves having to go to hospital.
Linda

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

Thanks Nicky. Would prefer six weekly as fits in with other treatment. Good to know you can have it six weekly. X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lorraine

I started off on Denosumab every 4 weeks as that was, at the time, the standard dosing cycle (this was 4-5 years ago) but this was moved to 6 weekly when I was on IV chemo as it made sense to coincide the times I was at the hospital. Maybe they will give you Denosumab 4 weekly for a few cycles and move you to 6 weekly, you can always ask. There’s certainly nothing unusual about either of those cycles, it’s just what fits in with their policy and what you want to do.

Nicky x