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Xeloda / Capecitabine - Your Top Tips, please?

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

Oh my goodness, I hadn't realised the thread has progressed so much since I last posted! I usually get an email when someone posts on this thread, but I don't seem to have had any for a few days - I hope my settings haven't changed!

 

Traz - well done on your fifth cycle. Please try and stay positive (hard, I know). Many ladies have had a long time on Cape - I believe one lady who used to post on the Forum had 9 years on Cape. I myself have had 3 years so far. All the indications at the moment (just had a CT scan on Tuesday, so will know more when I get the results of that) are that it is still working.

 

Linda, Jane and George, I hope you are all doing OK.

 


Hugs, and I hope everyone else is OK.

 

Barton.x

 

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

Really encouraged that Cap has had some positive results for you.  I'm on my 5 cycle and have my first scan on Monday, I've been feeling very negative but after reading your post on I'm feeling a lot more positive. Thank you.

 

I know how you feel after the dog walk, my feet burn and I've found that sitting with a frozen gel pack under them helps a lot.

🍀🦋

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

Hi Jane

As you say we are at their mercy. I agree it is a long time to wait between scans. I sometimes think about going privately for a bone scan as not had one since 2014. It is worrying.
Linda

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

Evening Jane

When I was at chemo unit today they give me the next 3 appointments mine also falls on 26 December. I questioned it and was informed they have not decided what days they were working yet but would not be working Boxing day. Least we won't be taking cap over Christmas.
Hope next course goes well for everyone.

Linda

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

Hi Linda
That happened to me last Christmas! Onc told me to get them done too soon and pharmacy refused to do the chemo ! That reminds me I have to ask about Christmas this year as i think my day is Boxing Day if I’ve worked it out right, not good as I’ll be down South then ! I have always had ct scans roughly 5 monthly usually they seem to leave it if I have fluid build up. Don’t really want them too often but I do feel they could do ultrasound more regularly to monitor fluid.
I have asked for that but was refused, we are really at their mercy.
🐝Jane🤗 xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Afternoon Cap ladies

Just been to collect my next course of Cap tablets. When I was there I took a look at all my blood results all within the normal range. I did not get copy of the results. It was abit hectic. Had to have bloods done again as I had my bloods done last Thurs and seemingly it should been Friday as chemo unit could not print off prescription. Did not mention it last time I was there so yet again it was hunt the vein. Third time lucky. Got tumour markers done yet again I had to ask. It is a bad job as us the patient has to keep them right.
Linda

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

Morning Moijan

Regarding Mris I have not had one since November 2009 before starting chemo. I had mastectomy of one breast and I did of an MRI of the other. I did mention at the time lobular cancer is more likely to appear in my other breast and I should be having MRI as appose to mammogram as it does not show up on them. I was informed they did not carry out MRI regularly. I do worry if I get any twitches that it has gone there. Weird all hospitals don't have the same standards.

I am going to ask see blood results this afternoon.
Linda

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

Morning All
Thanks for all the advice . I think he probably does TM s but doesn’t tell me , I used to check my bloods as I could see them on printout when having IV Eribulin. They were always very stable and Onc usually says bloods are excellent, so wasn’t too worried. I think I’ll ask for a print out now though. For me increase of fluid in my tummy is a good indicator but I feel it was possibly left a bit long before changing chemo. On the positive side my hair is growing! After 2 years of baby fine ultra short it looks like I may have to start the morning blow drying performance again !!! Big hugs Jane xx🤗🐝
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Janieb

Gosh, your hospital stay sounds awful. 3 days was a long time to go without food. I hope things are sorted now, sounds as if they are.
Regarding bloods print out, I think hospitals are different in terms of procedure. When I was at a previous hospital, I had to go in the day before my appointment and results were computerised for my onc who would tell me if I asked. At my current hospital, I have my bloods done an hour before my onc app and they give me a print out of my full blood count if I ask. Much prefer the latter procedure. TMs go straight to onc a few days later and, as I mentioned before, he tells me what they are but ignores them with other patients as they are not always reliable and can cause a lot of anxiety. My onc always goes on scans for an accurate picture of what is going on. I tend to have a scan about every 4-5 months.
Have a good week all.

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

Hi Janieb,

I was sorry to hear about the hospital stay- I too dread them! Re tms- you do have the right to ask for a printout of your blood results ..... in fact any of your results at all.

There does seem to be a wide variation in wether tms are seen as valuable or not by the onc. My onc uses them in tandem with mri results to monitor ? Progression or not.

I too have lobular and when on cape I had 12 weekly mris, when on Eribulin I had 9 weekly mris= after each three cycles.

Mris are good for monitoring lobular cancer... they can tell how active the bc
Cells are by the amount of water around them.

I must admit Re scans, I rely on verbal feedback as to the results, however I do have copies of my gp letters which you can ask for( again-your right to have these if you want)
I hope this is helpful Xx

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

Evening Janieb

Sorry you have had spend time in hospital. You would think you would have been kept in isolation with you being on chemo as we are told to avoid contact with people that have cough colds etc.

Regarding your question about tumour markers. I had lobular breast cancer and from diagnosis I have always had tumour markers done. In fact for over 4 years they used only them to see whether treatment was working.

Like you I am due to start 2 course of Cap tablets hopefully it goes as smoothly as first course.

Linda




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

Hello Janie, sorry you have had such a nasty time lately. The cold and the drainage sound nasty.

 

I'm sure you know about moisturising your hands and feet, but it sounds like you should perhaps be moisturising your face and anything else that feels dry.

 

Re the blood test results - I don't get a printout of the results, but my Onc shares them with me when I visit, and they are written in what, is our hospital, is called a "blue book" even though it's white! Who knows why?! This is then handed to the pharmacist who dispenses my pills, then handed back to me. I do keep an eye on them, and as they are all in one place, they are easy to compare.

 

Good luck with your second cycle.

 

Hugs. Barton.x

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

Good morning all ,
I’m due to start round 2 of Cape on Tuesday. I’ve had no se but dry skin on my face but that might be due to a cold I got from 3 days in hospital. I had to get ascites fluid drained but the only way it can be done quickly is as an in patient . Ended up with a cold and dehydrated as they made me fast 3 days just in case of a chance of an ultrasound scan . They kept me in an extra night to monitor me because they thought there might be infection but then no nurse came near me all night ! My husband would have been taking my temp every couple of hours if I’d been at home. I Was on a ward with someone with horrendous cough! Paced the corridor and hid under the covers all night ! Not sure how to do it but have to avoid that situation again ! I know Paracentesis procédure can be done as an outpatient. My Onc doesn’t use TMs not sure if it’s because of my type of cancer (lobular bc with peritoneal mets so no sizeable tumours ) I might have to do research on that . Who would you get blood test print out from GP or at onc clinic ?
Big hugs 🤗
Janie xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning all

Gosh, Barton you are a trooper-34 lots of Cape. So pleased it is working well for you though, long may it continue.
London, sorry to hear about your feet, sounds painful. However, good news scan showed Cape has reduced liver mets, must have been a real relief for you. My onc says the same as yours. We have to balance taking the chemo with having a good quality of life. The little breaks from chemo are something to look forward to and really help to motivate me even though I had an operation during my last break!
Hi Moijan, hope your treatment is working well for you too. What are you on now?
Lyndy, I have 2 blood forms and, if my onc forgets to include CA15.3, then I write it in. Mine are super sensitive and do change over the three weeks. If you do get mouth ulcers, try Gelclair; it is very effective and gentle on the mouth. Easy to say, but I wouldn't worry too much about getting new SEs during your second cycle. I am certainly no expert, but main ones seem to be sore hands and feet ( mine have not been too bad) and big D.
Have a good weekend all despite storm Brian 🙄

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

Evening London

Poor you. I did realise side effects would start so soon on starting Cap. Your oncologist has got it right at the end of the day we need a good quality of life as there no point . Even with reduced dose and breaks from treatment it is still giving good results which is the important thing.

I am dreading starting the next course of tablets in case I get more side effects.

Wonder what the lowest dose we can be on.

Enjoy break from treatment.

Linda

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

Linda, the first week was fine no side effects at all then I walked the dog in the park as normal one lunchtime and half way round the park my feet felt as if they were on fire and I got back home to see large blisters on both balls of feet! Then the mouth sores started! Next cycle I had a small dose reduction then on the third one had another dose reduction. Now it is not great but it is manageable! I asked my onc if there was any correlation between sore feet and it working well and she said no! But it has been working well a scan after 4 cycles showed things had reduced by half and again the latest scan showed further reduction so I can't be too ungrateful! I still walk the dog twice a day (mostly!) I have invested in larger shoes with lots of cushioned insoles! That helps a lot! I also do as much of normal life on the breaks but have found mostly that the side effects are worse a few days after I finish the tablets. Because of the sore feet I've mostly had two week breaks between cycles. My onc allowed me a three week break so I could go and ride my horse and have a week's holiday with the family! And I'm having a three week break again to go and ride my horse! She says we must balance treatment with enjoying ourselves too!

I still hate taking the tablets on the first days of the cycle but it does get better and apart from the sore hands and feet now I don't have any other side effects!

Good luck with it, hope it works as well for you!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Afternoon London

So sorry to hear you are having trouble wirh sore feet. We rely on our feet to get around.

I am only going to be starting my second course of tablets on Monday so early days for me.

Just wondering did you start to suffering from sore feet straight away after starting treatment?

To everyone have a good weekend.

Linda

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

Afternoon Maria Louise

Thank you for your reply..

Yes I have had a bone density about 5 years ago now. It is when they scan just your spine. Reason behind it is hormone therapy can affect your bones .
Be fore starting Cap I had no problems with my mouth but they still give me Corsadyl. I was suppose to use it 4 times a day but only used it twice a day. Read it can affect your enamel on your teeth. Don't want to start having dental problems as well now.

Regarding sheet I received from chemo nurse was a printed pink sheet just listing what bloods to take and what bottles they should use. It was not a tick box system, wish it was as I would have just ticked it. Mind I was tempted to write it on.

I did not realise the test is more expensive that is probably why they don't like to do it.

I have not had mine checked since June although by mistake in August they checked .CA 125 which is for my ovaries.

Moijan must be nice to have a rest from chemo as you have been on it for a long time

Linda

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

Hello London, well done on completing your 8th cycle. It sounds like you are really suffering - so sorry to hear that. I have stuck with the 2 weeks on, 1 week off cycle (my Onc was not impressed when I mentioned the 1 week on,1 week off cycle that seems to be quite common in America (going by the Forum I read from there). That is not to say that your Onc wouldn't agree to it. I'm not sure that  that would make any difference to your se's though. Would your Onc consider a further dose reduction? I have had two over the 3 years. If not, as you have had such good results so far, would your Onc consider a slightly longer break for you? Whatever happens, I think you need to have a serious conversation with him/her, and fully explain your worries. I know that that is not easy.

 

Good luck, London. Hugs. Barton.x

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

Hello all, I've just finished the 8th cycle of capecitabine and a recent scan shows it is is still working well with reduction to (extensive) liver mets and stable bones mets. The dose was quickly reduced to 3000mg as initially I had a very sore mouth and then my hands and feet were very sore too, but this is now mostly manageable. My onc wants to keep me on this chemo. Mostly I had longer than a weeks break between cycles to give my feet more time to heal and this last time I took a week on tablets then had a week off then finished them (yesterday!) but my feet if anything are more sore than before! I now have a three week break befor I see the onc again!

Can I please receive advice on what tablet and break regime worked best for long term cape users!

Thank you! Sian
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Linda, I have had the same thing happen - the hospital forgetting to mark the TM box (or in our case, write it on the bottom). In the past I have asked my friendly GP nurse to write it on and she has. I have also had the hospital ignore the instruction too - I was told that they don't like doing it as often as 3 weeks apart as it is an expensive test. Also, I think they consider that things won't have changed in 3 weeks anyway.

If you consider you haven't had one for a long time, I would do Moijans trick of ticking the box yourself.

Hugs. Barton.x

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

Hello Maria Louise. You ask about having a bone density scan. Yes, I have had a couple of those over the years (my hospital says they do them every 5 years for those considered at risk). I think they call it a DEXA scan for some reason. It's very easy - just lie still for about 5-10 minutes I think it was. They can tell if you are at risk of bone thinnning, either from Osteoporosis or another cause (cancer or some medications). Nothing to worry about. It's not a noisy machine like an MRI, just like a normal XRay machone (in our hospital, anyway).

Hugs and good luck. Barton.x

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

Oh and Lindyloo - re the corsadyl - my hygienist commented my teeth were stained from it- told my onc- who suggested I dilute it 50% with water. But if you were using it for sore mouth, you could try Sodium bicarbonate 1teasp dissolved in a glass of water- I even used to carry it round in a water bottle - one trick to try is to rinse your mouth out with it after every time you eat or drink anything - really helped me
M👩🏼
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks George Xx
Lindyloo- you will be too late now, I always check the box for the tm is ticked, before I have bloods-but they give me the form when I book in at opd- I have been known to just tick it myself, as my onc once said to ‘remind the chemo nurses to make sure the tm box IS ticked’ as they used to write the week 2 blood form. The phlebotomists won’t tick it for me as they haven’t the clout .

Now I’m not on chemo, the opd staff always write the form - tm box was ticked this week
But I will keep checking as my onc is using my tms to monitor the drugs efficacy, along with whole body MRI s from now on.

Best of luck with itxx
moijan
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Linda

 

i would say that it is almost certainly the corsodyl.  I used it once and thought I would never taste food again.  

 

I had had a mammogram 2 weeks ago, first one after my lumpectomy last year, I received an appointment to see my breast surgeon  who also said I need to have a bone density scan.  Have you ever had one of those ?

 

xx

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

Evening Barton,George,
Thank you both for getting back to me regarding my burning mouth syndrome. I am wondering whether it is the Corsodyl which I was prescribed by the chemo unit. I have stopped using it for the last couple of days and my mouth has felt alot better. Will mention it when I pick tablets up on Monday.

George good to hear your tumour markers are going down long may it continue.

Went to hospital today to get my bloods done. Noticed on sheet chemo unit yet again forgot to put CA153. Wonder if I ask on Monday it would be too late and the lab would have thrown my blood out.

Do you ladies still get mammograms? I have not had one since 2012. My breast cancer was lobular which is difficult to spot anyway.

Moijan
Good luck with your new treatment.

Have a good weekend everyone.

Linda










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

Hello George, yes, my Onc goes partly on TM's for me, too. They have proved fairly reliable so far. I went to the hospital today for my next lot of pills (Cycle 34, all told). My TM's have also gone down!  Yay! By 9 points this time, but still quite a lot higher than when I first started Cape. My Onc goes by the trend, too.

 

Hugs and best wishes to all. Barton.x

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

Thanks Moijan, my TMs are still relatively high but onc goes on trends. He says he doesn't rely on TMs for all his patients but mine have been super reliable in indicating when a treatment is or isn't working. Great when they go down or stay the same, not so good when they go up as they were doing from May to September.
Starting cycle 3 of Cape today so keeping fingers crossed for some stability. Also, starting a Mindfulness course tomorrow so hoping for some tips to keep stress levels more constant.
Hope SEs are not too bad on your treatment.
Have a good weekend all😊
George x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George,

was just reflecting today, from my own printout, that my liver function tests are still pretty high......have been for a looong time now. Have just started Fulvestrant and noted a very rare side effect(as one does!) as being Liver failure....ho hum.

 

glad to see yours are falling tho.

 

much love and best wishes,

 

moijan 💁

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

Thanks, Barton. Stress levels were off the scale this morning. It was such a relief that TMs are going down, not massively but every little bit helps 😊Hope you are having a good week
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh george, that is excellent news! So plsd for you!
Hugs. Barton.x

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

Hi Barton and Lyndyloo

Good to hear from you both. Glad that SEs are not too bad. Hope you are enjoying your week off and treating yourself. I too have a dry mouth, but without the burning sensation. I just drink a lot of water, use an artificial saliva spray and take pastilles called Salivix.
Regarding bloods, I always get mine done at the hospital before I see the onc as my hospital gives me a print out. I do have to wait a few days for TM results. Speaking of which, saw onc today and TMs have started to fall which is such a relief, makes it all worth it.
Hope all Cape Crusaders are doing well.

Hugs

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

Hello Linda, congratulations on finishing your first cycle! No, not had a burning mouth, I'm afraid (well, not afraid as it sounds horrid), but it means I have no suggestions to help you.

 

I generally go to my GP's surgery for blood test, but it has to be at least 2 days before. If I have been late booking and unable to get a gp appointment I go to the hospital. They have a blood department where you just queue up and wait your turn - no appointment necessary. But that has to be the day before usually. Your hospital could vary.

 

Glad you haven't gone off your food - I never have, either.

 

Hugs. Barton.x

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

Afternoon Barton & George

I am now also on my first week off cycle one.

Fortunately I have not suffered badly from the big D but what I did find on a couple of days I went more than usual. Appetite has been just the same as normal which is good. Think hubby would start to worry if I suddenly went off my food.

One thing I have found for the last few days is a very dry burning mouth syndrome. The chemo unit did give me some mouthwash to use but it has not helped at all. Have either of you had a simular problem to suggest what can help.

Just wondering regarding having bloods done before next chemo visit will I ask at GP surgery or do I go to the hospital to get them done.

What had been doing is getting them done at chemo unit when I was on E/E as they used to just check the blood on a machine before sending it off to the lab.

Hope all the other cap ladies are doing OK.

Linda


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

Hello George, lovely to hear from you. No need to apologise to me for mentioning the big D! Suffering myself at the moment, too! Smiley LOL - oh, the joys!

 

Hope everyone else is well and coping. Keep in touch.

 

Hugs to all. Barton.x

 

 

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

Hi all

 

just catching up with all your news. I am on week off after just finishing second cycle. Main side effect for me is, as always, the big D (sorry Barton). I am on a reduced dose -3,000 mg a day so I suspect I must have a very sensitive stomach😳Hands and feet have not been too bad. I use Flexitol on my feet with 25%urea which seems to help. 

Seeing onc on Tuesday when I should have some idea whether Cape is working as he will have my TM results, first ones since August as I have been too scared to ask so fingers crossed. 

The weather has been glorious here this weekend which is always a bonus😊 Enjoy the rest of the weekend everyone.

 

George X 

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

Hi oggy

I think a muga scan is similar to an echocardiogram, both of which check the heart function to make sure you can have Herceptin.  Herceptin is known to have an effect on the heart, hence the regular scans.  It doesnt mean it's long term damage, just can cause some problems in some women whilst on Herceptin.  I have had plenty of echo's done but don't know the exact differnce between to two types of scan.  I am now also judged (from a recent liver biopsy) to be weakly HER2+ but I don't respond that well to Herceptin, and other HER2 inhibitors, so it's been decided there's no point adding them to the mix any more.  I am strongly ER and PR positive though and do seem to respond well to treatments that target those receptors.

Nicky x

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

Thanks again for the encouragement. I'll press on & try being a bit more patient perhaps! Philippa x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you, I'll look into the memory foam soles. Sounds like a good idea- so encouraging. Philippa x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Philippa, you can't do better than follow Marli's good advice. I can't improve on it! The only thing I can really add, is to stay off your feet as much as possible until your feet feel better. Not easy for you by the sounds of all your activities! Wow! I am seriously impressed.

 

I have found that se's vary quite a lot over the cycles - especially if you have a short break from the Cape. The only problem being, that sometimes you lose that lottery and they end up more painful! I'm currently now suffering an itchy rash on the lower bit of my right thumb. So annoying! I keep forgetting to moisturise, though, so probably my fault. The previous lot of cycles, I was very lucky and had very few se's.  Luck of the draw.

 

Hugs and best wishes. Barton.x

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

Hello Oggy, glad you had a lovely week in Kent. It's always good to be able to relax and enjoy yourself.

 

Congratulations on completing your2nd cycle and starting your third. I hope everything goes well for you.

 

No, never heard of a muga scan! Glad they are giving you Herceptin - I think people do very well on it, generally.

 

Hope you managed to get to the meeting today.

 

You are fully entitled to a rant, Oggy! I know exactly what you mean - people not in the same situation all seem to think we'll get over it soon!

 

Hugs and best wishes. Barton.x

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

HI Phillapa. Regarding the sore feet, by the end of my second round my feet were so bad that the skin came off from the toe to the heel in leathery, strips. Onc gave me an extra week off to recover. Since then I have creamed them at least twice a day with Aveeno. But the major difference is wearing shoes with memory foam soles from Hotter. You can also buy the soles from  Hotter for £10. My feet are now perfect after over 3 months. Hope you can sort your feet out.  Marli x

 

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

Hi I am half way though my 4th cycle of Capecitabine.I had very sore feet during the first cycle but thought it was self inflicted as I was walking in sandals & not paying enough attention to my feet & had even used a ped egg on the hard skin! I soon realised that was a definite NO!NO!

I stopped half way through the 2nd cycle as I was literally hobbling around on my husband's arm. My dose was reduced by 15%.

3rd cycle was  ok but still very red, sore feet but using copious amounts of the prescrbed Diprobase x2 daily. Now half way through the 4th cycle & after a busy w/end, with quite a bit of walking, but not an excessive amount, I have had to rest with feet up for 2 days. Advice from my chemo nurses is to continue on the Cape unless feet really flare up/crack! They said it might plateau after this cycle.

It's just as well I'm not working...I gave up my teaching last October as I found it too stressful  returning after a year off after  going through all the op, chemo, radiotherapy. In the summer I felt fighting fit despite

knowing the BC was already in my bones. I cycled in the Pink Ribbon cycle event (absolutely brilliant- just getting bikes from Manchester to Londan was amazing on the train) in June having worked hard on getting fit & back to normality. In July I learnt BC was in my liver so had to start on Cape.

Now I feel confined to quarters; going to the gym, swimming, cycling seems to be on hold while my feet are a problem.

Is there any advise so I can get out & about again?

Thanks!

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

Hi all not been on for a while as had a lovely week away in kent during my week off. I have just picked up my 3rd cycle of cape. CT scan for baseline shows advancement of cancer since first scan in may prior to biopsy, but they expected that as no treatment had started . The next scan is the one they will use to measure success of cape. That will be in two more cycles. HER2 came back as borderline so they are going to start me on Herceptin anyway. I have to have a "muga" scan of my heart first so will probably not start that until next cycle. Anyone heard of this scan? new one on me. Planning on finally getting to the secondary breast cancer meet up today. Still feeling ok just get frustrated sometimes at some peoples denial about this whole thing ...they just blank off and say unhelpful things like you will beat this,stay positive. Well I am positive and I am determined that the treatment will manage this cancer,but I wont "beat it" ...sorry rant over. Anyway will keep trying to post at least weekly. Really like to hear other peoples experiences it helps a lot

 

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

Hello Janie, glad to hear you are being waited on - all is as it should be Smiley LOL! Glad the times are working out for you.

 


Hugs to all. Barton.x

 

 

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

Hi Barton and All,
Thanks for the advice . I got breakfast in bed today - well in the bath to be more correct! 7.30 am and pm works ok for me.🐝Janie x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Janie, welcome, but sorry you have had to join us. Yes, space out the doses - I was told 12 hours apart. On the whole, I have managed to stick to that, but ocassionally it's impossible. The odd time differences won't hurt. A lot of people seem to work out their own schedule, but I usually work on the "if it aint broke, don't fix it" line of thought. It has worked for me for about 3 years now.

 

Any questions, we will all try and help, but I can recommend reading back over this thread for some excellent advice from some wonderful ladies.

 

Hugs and good luck. Barton.x

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

Hi Everyone,
I just started Cape last night and so glad I read the thread . I hadn't realised that I should space doses evenly so I'm hoping I'll get breakfast in bed tomorrow!! Feeling ok so far and hoping my hair may thicken up after Paclitaxel and Eribulin for last 2 years. It's so useful to read everyone's advice . I'm off to moisturise hands and feet . Night all Janie x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

So glad the weather improved when they came out of the church! That was lucky.

 

Sorry, can't help with when se's kick in - a.I can't remember, and b.everyone is different.

 

Good luck though. You might be lucky and not have any!

 

Hugs. Barton.x

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

Hi Barton

Weather was bit dodgy on the morn ing but it got out sunny when the bride and groom were coming out of church. We were really lucky.

Well first day over with on cap. No problems upto now but it is early days. When do the sides effects normally kick in..

Forum has been a bit quiet over weekend. Everyone must have been having a good time.
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Hope everyone is ok.

Linda