Xeloda / Capecitabine - Your Top Tips, please?

[Sandra59]

Hi everyone, hope you are all keeping well, I hope your daughters prom went well last night Lollymum.

I saw my GP yesterday and she sent me to A&E in case I had blood clots, I didn't want to go but reluctantly agreed.  They were unable to get blood out of my poor veins so I ended up having to have a femeral stab to get blood, it still feels sore.  The d diamond blood test came back positive so I had to have a chest CT which eventually came back negative. After 7 hours I managed to escape, so it will be back to the GP get again next week!

Enjoy your weekend everyone, sending hugs

Sandra

[LollyMum]

Hi everyone,

Barton and Angela60, thank you so much for your replies.  I'd no idea you could be on a chemo for three years - that's such an encouragement!

Sandra, how did the heart racing resolve? Did you manage to get some sense from someone and some help? I bet it's really frightening. 

I took my first dose of Cape Wednesday evening. I'm on 3,600 mg a day as my side effects from pac were so bad they're starting me off gently.  By the next morning my stomach was huge and so uncomfortable. It remained swollen all day and I was also nauseous on and off all day.  Is the swelling normal? Neither hubby or I remember them mentioning is.  Anyway, today it's better. still bigger than usual - I'm walking like I'm 3rd trimester pregnant - but I've not had any nausea which is a bonus. I've asked my bcn about drinking dandilion tea to see if that will help.  

I've just been and collected my daughter from the hairdressers, so been a good mum. She's got her prom tonight. She looks so beautiful.  I'll never see her on her wedding day - but I'll get today. #silverlining. 

I'm thinking of not taking the anti-sick pills before supper tonight - I can't imagine taking them for 14 days, so wondering what the thinking is.  

I find taking the tablets difficult - so every time I have to take them I'm lighting  a massive candle and focusing on the still flame. It's calming somehow. 

I do hope everyone has a comfortable, peaceful, happy weekend. 

[Sandra59]

 Hi everyone, I hope everyone is coping well with treatment.  Angela 60, I am pleased your Onc has offered you a reduction in vin, hopefully it will reduce your side effects.  Angelah61, I hope your bloods are soon ok so that you can continue cape.

I saw the Macmillan Nurse on Wednesday and had a long chat with her about my side effects from vin and cape which have got a lot worse since the introduction of vin.  She said she would speak to my Onc about a dose reduction.  She has just rung me to say that my Onc had decided to change my chemo completely, I have no idea yet of what to, so not to start taking my next lot of chemo on Monday.  I now have to wait for an appointment to see him!  I'm a bit worried as I was referred to max fax for a dental assessment before sarting bone strengthening treatment, they want to remove a broken crown but my appointment isn't until 28/7.  I am worried that my Onc will not want to start any new treatment until after that.  

When I saw the Macmillan Nurse I mentioned that I had I had been twice to the  GP in the last few weeks as I had felt unwell and my heart seemed to be racing at times.  The first time my  temperature was up and I was told to let the hospital know, which I did.  The second time the locum I saw didn't seem to know how any of the equipment worked and told me that my heart rate and BP were fine.  When the Macmillan Nurse checked them they were both very high and she told me to go back to my GP, so I have an appointment this afternoon.  I now have my own BP monitor so that I can check it myself, my BP was up to 220 over 126 after the phone call about my chemo so if the cancer doesn't kill me my BP will!

Sorry I have rambled on a bit, I am getting a bit stressed, I hope everyone has a nice relaxing weekend.

Hugs x

Sandra

[angelah61]

Hi. Just got back from onc appointment & thought I'd update you on how it went.

My tumour markers have stayed steady (not up but not down either). Platelets, red & white cells & nutraphils all too low so have had to repeat bloods. If they are no better then chemo will be delayed for a week. At least we are going to carry on with 100% Cape for the time being with added help for the indigestion, nausea & big D! Hopefully things will improve over the next few weeks & we won't have to resort to other treatments. Thank you all for you comments & support. x x

[Barton]

Sorry to read you had such a rough day yesterday, Angela - it is tiring walking around between hospital departments - I don't think they realise quite how tiring it can be for someone on treatment. Can't be helped, I suppose. I hope all goes well for you over the next few weeks. Keep in touch and let us know how you get on.

Hugs. Barton.x

[angela60]

Hi lollymum and everyone else going through tough times.i spent 5 hours at hospital yesterday awful day non stop rain,waiting to see oncologist was an hours delay will see mac nurse in 3 weeks as he's on holiday or something then 3 weeks later will see him and have ct scan to see if vinorelbine is working.after seeing oncologist then wait for pharmacist for prescription fir cape and vinorelbine then take that to chemist in main building then go for blood test I was shattered all that walking!! Once has reduced my dose of vinorelbine slightly as I list bit of weight from loss of appetite. Start 8'th cycle of Cape and 2nd of vinorelbine. Vin caused bad stomach last time so wait and see..trapped wind also a problem put in omeprazole, it's a wonder I don't rattle well actually I think I do the noises my stomach makes.hugs everyone xx

[Barton]

Hello Lollymum, welcome but sorry you have had to join us. It sounds luke you have been through the mill a bit with your previous chemo. I do hope this one treats you better. It is supposed to be a "gentler" chemo (if any chemo can be said to be gentle!), but, after all is said and done, it is still chemo.

You have started off well by readong previous posts - I would say go back as far as you can to read the tips and tricks - I found it extremely useful, partly just knowing the things that I might expect. However, we are all very friendly and will try to answer any questions you might have.

I have been on Cape (off and on) for nearly 3 years now. I found one of the most important things to know was that if se's build up you can take breaks from Cape. I have had several over the 3 years. I have been lucky and not suffered too badly from some of the nastier se's - just mainly rather sore fingers, but, as the effects are cumulative, I didn't suffer too badly for the first 7 cycles. I haven't suffered at all from nausea (a few people on this thread have), but I do get the big D most cycles. Taking the "magic pills" (Loperamide) sorts that out though.

I can't emphasise enough though that you need to be honest with your Onc re se's, etc. I was given a dose reduction (from 4000mg per day to 3600mg per day, both doses split into two times per day) after my first 7 cycles in order to help my sore fingers. It helped a lot. Your Onc should be willing to work with you on this hopefully.

Sorry for long ramble! Please ask us all any questions you may have. A lot of people congregate on the Bones thread on the other section of the Secondaries area of the forum, whether they have bone mets or not. You will find everyone friendly and welcoming, and you may even have a laugh occasionally!

Hugs. Barton.x

[angelah61]

Hi LollyMum.

As you will see from all the posts in this thread, most of us have had very few side effects from Cape. Usually the se come from a combo of cape & vinoralbine. I find the hardest part is forcing myself to eat so I can take the tablets even when I have no appetite! Stay strong & hopefully you'll find it quite easy. x

Angela

[LollyMum]

Hi, 

I hoping I can join this thread and get some top tips too. 

I'm due to take my very first dose of Capecitabine this evening after supper.  I'm absolutely dreading it wondering if I'm going to be incapacitated by the se.   I thought having tablets at home would be easier than weekly hospital visits but now the reality is here, I'm so nervous. 

I was diagnosed with secondary mets to the liver in February, and put onto weekly paclitaxel. 18 doses. Should have been my last one today, but in fact I only managed seven out of the 18. I have had every side effect going - and more besides. I won't bore you, but my bloods were rarely right to have the chemo. So now this has to work - or what then?  

I'm most nervous of being sick - I think. Has anyone found it really awful, and do you have any top tips?

The paclitaxel I managed to get up every day and be around - but some days I was mostly on the sofa it has to be said.  

I'm mum to Lolly, who is just 18.  So I've managed to get her through A levels (last one tomorrow), and prom (like Racer) this Friday is all sorted, as I bought her outfit the weekend after I was diagnosed, as I had hypercalcemia and read that I might only have a few weeks (don't google!). 

would love to "meet" some people on the same chemo.  

[Moijan]

Hello ladies,

sorry for the late post....Racer, so glad you are feeling more comfortable......hope you ar now home?

love and best wishes, Moijan💚💚💚

[Sandra59]

Hi Angela,  I am feeling exactly the same as you on the combination of vin and cape, the first cycle wasn't too bad apart from tiredness and the big D, but this second cycle has been awful. Cape was so easy compared to this,  I am just coming to the end of my 2 weeks of treatment and all I want to do is sleep, by the time I have got myself up in the morning I am worn out,  my temperature has been up and down but only up to 37.9 so I haven't rung the hospital.  I have been drinking lots of water but have no appetite, when I do eat I find that after a couple of mouths full I have had enough and feel bloated.  My husband got me a carton of chocolate milk yesterday and I found that was ok to sip at.  Like you I find that I am getting lots of indigestion and indigestion tablets don't seem to help much I have been on omeprezol for years as I suffer from acid reflux. 

I am not due to see the oncologist this  cycle only the nurse but I often find that she is better than the onc  and has more time to talk.  Let's hope that we both get some advice on how to cope with these symptoms when we have our appointments this week.

Sending lots of hugs

Sandra

[Barton]

Hello Angela, so sorry you are feeling so crap. One chemo on it's own is bad enough, but two together must be truly awful. Sorry you are getting upset insides, and are having insomnia too - that just tops it off!

Re trapped wind - would your Onc prescribe you something like Omeprazole or Lanzoprazole? Both are very good anti-indigestion tablets (I am on Omeprazole, and I know when I have forgotten one!). I think Lanzoprazole is the stronger of the two, but not sure. Worth asking your Onc or GP.

Hope you feel beter soon.

Hugs and good wishes. Barton.x

[angela60]

Hi everyone haven't posted lately, feeling really tired started first 2doses of vinorelbine last week. Day 1 take capecitabine as usual fir 2 weeks, day 1 and day 8 I take vinorelbine capsules the first went ok no problem then my taste was affected not eating much took 2nd vinorelbine and bad stomach and diarrhoea that night. Spent all day Friday in bed feeling awful.a week later still no appetite no energy worst I've felt in ages. Also can't sleep had awful trapped wind still awake 2 in the morning. See oncologist Wednesday and start cycle again not looking forward to it had no problems at all on cape but now with the other added I think what next, anyway hope everyone having lovely weekend xx

[Barton]

Hello Sandra, Babsy and all, sorry to read about treatment problems, se's, etc. Hope you are doing OK today - at least it's cooler!

Hugs and good wishes. Barton.x

[Barton]

Hello racer, lovely to hear from you! So glad you are feeling better now you have been drained. That is an awful lot of liquid to be dragging around with you - it must have been so tiring (apart from anything else). Good luck, and let us know when you get home.

Hugs. Barton.x

[Moijan]

Hi Angela,

I guess you could try 'Heathers Hair' explore them online...they send you real hair peices on a headband, Ive been waering mine under a scarf, but you could get a longer one and wear it under your hat! Have a lookat the website...they only ask for £5 postage....I tend to donate an extra £10 as they are a very good service run by non paid volunteers.

you will need a trim from your hairdresser tho to tailor the look you want.

love and hugs,

Moijanxx

[marli]

Good to hear that you are feeling more comfortable. Hope that you are home soon. Positive thoughts and lots of hugs.  Marli. x

[racer]

Hi everyone especially Barton and Moijan , I wanted to say hello everyone . Drain was put in last Friday and nearly lost 4 litres of fluid and felt. Better.. It came out yesterday . Hopefully will be. Home soon . Hope everyone is ok and have a good. Weekend .
Sending hugs to everyone xxxc
Racer xxxx

[angelah61]

Thanks Sandra.

The big D seems to be a recurring theme with everyone who's taking Vinorelbine (not looking forward to that!). Maybe it won't come to that. My Onc also thought about going back to the Totaxitel that I had during primary treatment but as I had such awful side effects (lost all my finger & toe nail & all the skin on my hands & feet plus the normal hair loss & nausea) she is holding back on that until we absolutely have to resort to that. We'll see what next weeks bloods turn up! x

[angelah61]

Thanks Babsy.

I wish I could do that (if it becomes necessary). I look awful in hats! Even my daughter agrees as we've tried on loads. I have my outfit all sorted so this is just a spanner I wasn't expecting. It may not be a problem but as I said in a previous reply, I'm the sort of person who needs to plan in advance. x

[Sandra59]

Hi Angela, 

I have been on 100% cape since January with few side effects apart from tiredness, after 5 cycles  of Cape my scan showed slight reduction of the metastatic lymphadenopathy in my neck and mediastinum, but progression in my 5th and 6th ribs, the lesions In my pelvis were stable.  My Onc was unsure whether to change my treatment completely to taxtorere which I had during my primary treatment in 2004 on a drug trial, it wasn't routinely available as a primary treatment in England then, or to combine vinorelbine with the cape.  As my veins are shot and I would need a line putting in and then have to have blood thinning injections each day, because the line I had before caused blood clots, my Onc decided to try the vinorelbine.

I am just coming to the end of my 2nd cycle and have found the new regime tougher than cape it's own, the tiredness has increased and I was hit with the big D about 7 hours after taking vin, I have also had a bit of a temperature, luckily it has only reached 37.9 so I have avoided hospital and having to stop treatment.

I hope everything goes well with you and the right decisions on treatment are made.

Sending hugs

Sandra x

[Babsy]

Hi Angela, I was bald when my daughter got married in Santorini. I wore my wig and a beautiful M&S hat.  It was boiling and I just couldn't keep wig on, so I whipped it off and just wore my hat for the rest of day. It covered the fact that I was bald. Could always try and find a hat and a couple of pin on hair pieces that disguise the fact that you be bald/ balding. 

[angelah61]

Thanks Paula. I guess I'm sort of jumping the gun a bit as need to see what next weeks blood results show. But I've always been the sort of person who needs to plan ahead & with the wedding so close I'm stressing! I'll let you know what next week brings. x

[angelah61]

Thanks Moijan. I tried the cold cap with my FEC-T treatment & found it didn't work for me. I'm just hoping that the blood results next week are favourable. I still have my wig from first time round but feel it looks like a wig & really don't want to spoil my daughters wedding photos! x

[kirky_68]

Hi Angela, I am on a very similar journey (BC 2013, MX, FEC-T, rads then mets in lungs liver bones and several nodes since Nov 2015). I am still on 60% dose of Cape though, my ONC only goes by scans and doesn't do markers as says many things can affect them so please don't lose hope yet that it's still working.

I lost my hair with FEC and was one of the very unfortunate ones in that it didn't really grow back -just fuzz on about 50% of my head so know exactly what you mean about fascinators! I usually wear a cap though have a couple of wigs if I'm getting dressed up.

Sorry I can't offer advice on Vino v Taxol. It will be my choice too if/when the time comes. I know several ladies in my SBC group who've had Taxol but noone who's had vino. They all say easier than FEC but very tired and they did lose their hair with it. Vino says more nausea likely but only poss mild alopecia plus it's avaiable as a capsule rather than iv. My veins are knackered so i'd lean towards that personally.

I hope you don't need to change treatments but if you do, good luck and hope whatever you decide works for you.

Hugs

Paula

[Moijan]

Hi there
I was put on vinorelbibe after almost 2 yrs
On Cape, didn't lose hair. If you go on Taxol, ask for the cold cap... but order a cute wig at the outset in case. I'm on Eribulin and stopped cold cap and lost hair... but now growing back whilst still on it! Best wishes, hugsx
moijan

[angelah61]

Hi. I've never used a forum before so am a little unsure of what to do.

I wanted some advice about Capecitabine & what other treatments are available when Cape stops working.

I'll fill you in on my BC journey so far - Primary BC Nov 2012, lumpectomy, 2013 - mastectomy, FEC-T (6 cycles), 21 doses radio & Tamoxifen. All seemed ok until May 2016 when I started having lower back pain followed by rib & hip pain. Secondary BC diagnosed July 2016 with bone, liver & lung mets. Started on Cape Sept 2016 on an 80% dosage without too many side effects (tiredness & palmer/planter syndrome). All seemed to be going well until about 8 weeks ago when tumour markers started to rise again. Scans show stable disease so oncologist is thinking chemo not working so well. We have increased dosage to 100% & now waiting for next blood test to confirm if its still working or not.

I have been given leaflets on Vinorelbine & Paclitaxel (Taxol) which I think is the oncologists next move but, as my daughter gets married in 9 weeks time, I'm worried about hair loss (a facinator doesn't look good on a bald head!) & not feeling well. How did anyone get on with either of these after Cape stopped working? 

Thanks.

[Babsy]

The blinds have to be screwed onto something solid. John had to cut one down but he found that easy. They just pull up and down by a little finger hoop at the bottom of the blind. Believe if John can do it anyone can ha ha .

[Moijan]

Babsy, thank you for the tipre cordless blinds..do they stick on? Oh isnt into diy and if they stick on, that sounds reallgoodxxx ps..did pm you a while back.

Mx

[Babsy]

We're lucky that we live in a bungalow so try and have all windows open to create a through draught. We also have a outside blind over the patio doors which means that the sun doesn't pour into the house and make it unbearable. Also have ceiling fans in four of our rooms and they're on all of the time. We recently bought some cordless window blinds from Ikea (£15 each) which are pleated so they trap the heat in these and also make it easier to watch tv,  they're really good. Thanks for the tips about floor fans, they vary so much in quality. 

[Moijan]

Just wanted to share about fans...found two very excellent ones yesterday in Robery Dyas! Have tried them both and they are so good I thought is share.. One was a 4 " Usb connection fan...all metal and I found this almost as good as th bigger one and can cart it everywhere! 5.99

190066 The other was A 14" floor fan. 39.99 and its brilliant in my bedroom at night. These made a big difference since yesterday as my house is boiling.

M

[Barton]

George, we haven't heard from you lately - I do hope you are OK, and that it just means you are getting on with enjoying yourself! Would love to hear from you if possible, just to check on you!

Hugs. Barton.x

[Barton]

Racer and Babsy, I just want you to know we are all wishing you both well, and pain free days (and nights,mof course).  Please let us know how you are getting on if you feel able.

Hugs, and much love. Barton.x

[Barton]

Marli, sorry to hear you are stuggling with your feet and hands. It's a real problem, isn't it? Moijan is right re creams, etc, but I expect you are already doing that - you might have to try a different one or two (how about the ones Moijan has mentioned?) to find the one that suits you best.  I can only really add that if you can stay off your feet as much as possible that will help. I know it's not easy - but I hope you have a partner or helper who will do the running around for you (there are certain things you will have to do for yourself of course!).

Thinking of you. Hugs. Barton.x

[Moijan]

Racer hope the drainage went well. Important to keep drinking water to. Flush out any unexcreted toxins.

this weather isnt very kind to us ladies expecially.

babsy, I sympathise...im struggling to keep cool

love, M

[Moijan]

Hi Marli,

yes, do ring chemo ward for advice asap. Can soak your feet in abowl of salty cool water and. Pat dry. The gently massage orpat on some eveeno cream(from Boots) we know that.' udderly smooth'cream is excellent but have to order that on line...aveeno is good enough.Put your feer up and let them air. Drink lots of water...

hope that helps....but do ring the chemo ward, they may. Have other good suggestions and will find a doctor if they need to, to talk to you.

Mxx

[marli]

Looking for some advice please.  Finished first round and was not too bad fatigue being the main problem. Second round brought the foot problems. Felt like walking on hot gravel. Onc told me that if it was the same on the 3rd round I should ring them and prob stop taking pills. 

3rd round - am 12days in and feet are a mess. Previous sores have started to peel, like old blisters. They are still sore but not as painful. Left hand is also sore due to coming down stairs gripping banister due to knee problems.

Do you think I should ring the chemo ward for advice? How do other people deal with feet and hand problems..  Any advice will be welcome.

Hope racer and babsy are doing well.  Marlixxx

/

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[Carolyn52]

Hiya babsy
Shouldn't moan about the heat and summer but its a struggle isn't it ..especially at night !
Hope you are comfy and pain free ..
Sending hugs xxxx

[Babsy]

Hi the heat isn't good, but I'm sitting in the front of the house which is  much cooler in the evening. Having quite bad pain back on Cape but just trying to keep myself topped up with painkillers. Hope everybody else is coping with the heat. 

[Moijan]

Hi Racer and Babsy, hope the heat isnt too much for you both just now xx

Love Moijanxx

[helen44]

Thinking of you both Racer & Babsy xxx

[Moijan]

Hi Racer and Babsyxx

hope you got the drainage sorted Racer,mdoes it feel any better

babsy, hows it going with you?

M💚💚💚

[Moijan]

Hi Racer and Babsy,

sorry....have not been on here a lot as have been dealing with painful issues, not related to bc. Anyway, had missed your posts Racer...sorry.

yes, I too think you are amazing. Some very breif thoughts...yes had heard about tamox causing the womb to grow extra thick linings and ? Cancerous, but when I was on it, they kept doing ultrasounds because I had spotting....I was on it around two years.

Re Hubby; your memory boxes, other needs etc. Hubby obviously loves you very much and wants you to keep fighting,,,if you feel up to doing memory boxes...they are a really good project to have and however long or short our lives are going to be...they will be worthwhile and you can keep adding to them, eg as you recall stuff you can place an extra post it note or scrap of paper in the box with notes on and they will 

add all to the other treasures you put in the boxes.....they will also be a very good 'aide memoir'e' for you yourself if you  get woolly in a few years time!

a friend of mine said last Sunday that he'd been put in contact with his local hospice and they were wonderful

gave him such a boost and hes getting lots of support, massages and other therapies, pain relief etc....and his wife is also getting support...have you been in touch with your local hospice staff? I met mine at the end of last year...wonderful people...often much more sensible/sensitive  than some doctors/gps/onc teams xx

re the chemo feeding the cancer...havent heard of that.....so sorry cant offer any experience re that.

however, the human mind is truly powerful...our very best tool in the tool box, and people often do better than they think.....so yes, think about what you really want and focus totally on that, alongside your hubby as he is your best ally xxx

lots of love, Moijanx💖💖💖

and I am looking forward to your next post xx

[racer]

Aah thanks Babsy , Barton and George I am going to do the letters whilst I can just so if needed they have something when feeling down .
So sorry Babsy that you are having a tough time . I am trying to embrace each day as I cannot do anything else.
I am having fluid drained off my stomach tomorrow so hopefully I won't feel so bloated . They will decide if I need anything permanent . Glad I asked . I will post when I have had procedure .
Sending love to everyone
Xxxxc

[Barton]

Racer and Babsy, sorry you are both suffering from bad news and se's etc. etc. You are both wonderful ladies, and so strong for your families. I can't imagine having to do memory boxes for children (I don't have any, and am so glad now). It must be the hardest thing in the world. Racer, I hope your husband has now come to understand your need to do this for the benefit of the children.

I wish you both all the best, and willing strength to you. Hugs. Barton.x

[Babsy]

Hi Racer, when I was a headteacher it was quite openly known that I had had breast cancer so mums often came into see me when they got a bc diagnosis to have a chat. I got close to some of them including those who subsequently passed. All I know is that they all created lasting memories with their children and made memory boxes. Keeping in touch with the families afterwards I know that these boxes, although hard to create meant an awful lot to the children. I have just had some bad news myself and although I will, like you , continue to fight, I will be writing letters and creating memory boxes, especially for my young grandchildren who probably won't remember me directly. Sending you much love xx 

[george]

Hi racer

Just wanted to say it sounds as if you have everything in place for your daughter's prom. I am sure she will look beautiful.
Regarding memory boxes and letters, it is a personal thing, but I have made my own box and written some letters. For me, it was not about giving up, just setting things in order. I think we have to do what feels right for us at the time-just a thought.
I hope your onc has been able to sort a new plan.
Sending cyber hugs

George x

[racer]

Thanks everyone . I had an emotional day yesterday but felt unwell this morning. I feel stronger today and I am using a walking frame which means that I am walking quicker. My hubby is stressing me out at mo. Think he is finding it hard which is upsetting me as I want to do memory boxes, letters etc. He thinks I should not do it as I am giving up and is in denial. I cannot be in several places at once as I need to concentrate on fighting this .

Funny face my Daighter's prom is on 28th, June. Luckily I had got her dress. And shoes in October last October as I had been told I was having Chemo . Sorted her hair about a week ago with help of a friend who we probably not seen for a few years. Suddenly realise who are your friends.
I just have to sort make -up etc but may get my Mum to assist.. I am looking forward to seeing my Daughter on her prom and hope she has a lovely time.
Sending positive vibes too. Thank you .
Racer xxxc

[Babsy]

Racer, continue to stay as strong as you can. My heart goes out to you and your family - don't worry about upsetting us, we are all sending you cyber hugs and the very best of wishes xxxx 

[funnyface]

Racer, I'm sorry that you had crappy results, but glad the CT didn't show anything additional. I hope they get themselves in gear and get you set up for drainage. I have no experience with this, but do know you are supposed to feel better. When is the prom? Does your daughter have her gown? Very exciting! FF