Xeloda / Capecitabine - Your Top Tips, please?

[Barton]

Racer, you are doing amazingly well, considering all the awful stresses you are suffering. I hope the drainage of fluid happens soon for you, which will at least take one worry off your mind. I'm sure your Onc will come up with something - especially after what was said the other day about looking into another chemo for you.

Hugs, and thinking of you and wishing you the best. Barton.x

[racer]

Thank you everyone for your kind words and support. I had ct scan yesterday afternoon . Spoke to Consultant on duty who said she could give me results and said if they were bad that I wanted my hubby with me as on own . She said there is nothing new and expected . I asked about drainage of fluid and they will arrange an appointment for me. Just got to wait for Oncologist to look at results and decide what next.. hope there is a plan . Just have to stay positive xxxx

[Sandra59]

So sorry to hear your news racer, sending hugs and prayers to you. I hope you are well enough to enjoy the precious time you have with your family.

Love and prayers

Sandra

[Barton]

Hello racer, I am so sorry to read your news. You have been fighting to keep going, and have succeeded - maybe you can succeed again. They always say that the mind is a powerful tool, so it would not surprise me to learn in the next few weeks that you have managed to do all you wish (and last longer, too!). You are one determined, brave lady.

You have all my good wishes. Hugs. Barton.x

[Carolyn52]

Hello racer
I'm not a cape crusader so gatecrashing here but just wanted to send loads of cyber hugs and hope your oncologist can pull something out of his magic bag to help you.
Hugs xxxxx

[george]

Hi racer

so sorry to hear your news. You are such a strong lady who seems to have an amazing family and support network. I hope hospital continues to stabilise things for you so you can go home soon. You are in my thoughts. Sending you lots of cyber hugs

love George x 

[kirky_68]

Oh racer, so sorry to hear your news. In my thoughts

Paula

[racer]

Thanks Marli For your kind wordsI. I will try to fight this as long as I can. Cannot give up when I have the kids. At moment staying on the Cape - last dose tomorrow . Xxxx

[marli]

Racer, so sorry to hear your news although it seems inadequate. You are obviously devastated.

Hope they can help keep you comfortable and enable you to see your daughters prom. You seem to have a wonderful support group .

You seem to be an amazing lady , who has dealt with everything with with strength and humour.

Will be thinking of your with love.  Marli xxx

[racer]

Hello everyone and thanks for the Birthday wishes. Sorry I have not been on the forum and it is the toughest thing I need to tell you.
I managed to go away to Minehead but had to see my Onc on the Thursday. The previous appt my platelets had gone up to 125 and we were really pleased . I went last Thursday and they had dropped to 88 and he felt that the Cape was attacking the Breast cancer and suggested that I started Chemo last Friday and then just have one week off. I was surprised but thought I would give it a go . Sunday and Monday my co-ordination went I could not hold anything and had a painful groin . Forgot to say the week before Cape we saw a Chemo Nurse and both me and my mum said I looked pregnant. She just glanced and said I need to keep my feet up .
Then Monday morning I noticed a small period discharge but was still confused etc. I woke up on Tuesday morning that I had bled considerably overnight. So I am back in Hospital and was told that they thought the Breast cancer or another cancer was in my womb .'The Doc said I am at high risk of a catastrophic haemorrhage - sorry cannot spell. I said I don't want to know how long I have as long as they can buy me more time . My Daughter's prom is soon and things I need to sort . So I have been put on meds to stop bleeding. Apparently the womb can occur when you have tamoxifen and I was only on it 18!months. I don't want anyone to start panicking as it may be something else .
I was told the Cape at some point will start feeding the cancer and if so my liver will pack in and only have a few days . Just hoping that there is something so I can go home and start sorting finances and wishes. I have had friends offering help and support. They will help me with memory boxes.
Sorry to tell you my bad news and your illnesses may be different , and don't want to worry you all as you have been amazing support even whenI wanted to rant. I will try to post on here but I might be unwell.
Sending hugs and positive vibes to all of the Cape fighters .

Racer xxxx

[Moijan]

Hi Sandra, you could be right about the combination.....I had both but seperately not at the same time. I never had the d on Vinorelbine ever. But i did on Cape

I have given myself the big D when ive eaten a lot of chocs,  also a few weeks ago when I had too much fresh apple juice.

[Sandra59]

Thanks Barton, I now have a MacMillan Nurse and I will had a word with her about getting a card and any tips, she has provided me with lots of other things.

Moijan, I like chocolate but only have a occasional square as I am overweight so that wasn't the reason.  I think it was because I had started vinorelbine on day 1and 8 of the cape cycle and that was day 8, although the big 'D' wasn't one of the side effects of vinorelbine I think that combined with cape it was.

Hugs Sandra x

[Barton]

Sandra - I have just ordered a toilet card from MacMillan online. I Googled MacMillan toilet card and several links came up. I had to jump through hoops and sign up to the website to get one, though. If you are already a member of their wdbsite, though, you shouldn't have any problem.

Hugs. Barton.x

[Barton]

Oh you poor thing, Sandra! I know it won't help at bedtime, but someone on the Bones thread (I think) mentioned that McMillans does a "toilet card", which I think you can present in any place that doesn't actually have public loos (if I have understood correctly). I am trying to source one now, but my hospital doesn't seem to have a dedicated McMillan office or base (I could very well be wrong). If you are afraid to go out, it might be an idea to try to get hold of one of these.

Hugs. Barton.x

[Moijan]

Sandra, I totally agree...thats awful

a couple of things that did promote the big D for me were....too much applejuice( once drank a pint in one go) and chocolate...which does make the bowel move....so if you think you eat a lot of chocolate...experiment and see if cutting down helps xx

oh and paracetamol, slows the bowel down, sometimes Ive taken two for pain and found that-its well known

good luck with the D anyway xx

Moijan

[Sandra59]

Hi Barton

Yes, I had taken 2 Loperomide before going to bed as I had already had one lot of D, but it didn't work!!  It makes you worry about doing anything or going anywhere in case you get caught short.  

Hugs Sandra x

[Barton]

Hello Sandra, so sorry to hear about your emergency! Do you have any Loperamide? If so, I can recommend taking them just to be on the safe side. I know what you mean, though - I was sitting up reading in bed one morning, and sneezed! Not a good move! Had to chuck the pillow (luckily I was sitting up on the pillow!) and do an emergency wash of nightclothes! Not at 2am though!

Hugs. Barton.x

[Sandra59]

I had a big 'D' moment the other night and ended up having to change all the bedding at 2am, my poor husband didn't think much to being woken up that way.  Luckily we have twin mattresses on one base so I only had to change my side. The mattress has now got a cover on it to protect it and I will have to invest in some incontinence pants!!!  

[Moijan]

Thank you... it was hard and I've had to take time out.... but learnt a lot

Glad you can take them... enjoyed your meal, I went out with a long skirt tonight so my shoes weren't really noticeable.... if you've got nice trousers you could get away with sturdier shoes!

[marli]

Yes Moijan, I used them when I was going anywhere special and have checked that I can do the same this time. 

Wow, you did well to do Uni. with chemo. I really admire you. x

[Moijan]

Yes Marli, I suppose...if you are allowed to take diarrhoea meds...you could always take one prophyllactically, in case of a mishap....the 'melts' work quickly so you could take one earlier...but do check with the onc, if you sont already know...or with a pharmacist...

I will never forget the runs in the library.....hope noone noticed...i was at uni two days a week too, and that was a bit hary...took, thermom, melts, panadol, antisickness tabs, all in my handbag with wipes to cleamn myself if needed....a small pharmacy....yes.

good luck and hugsxx

Moijanxx

[marli]

Yes , I have Hotters memory foam sole casual shoes but still not good look for being dressed up. As we are getting a taxi from hotel to restaurant am going to try some embellished pumps with an expensive gel sole and hope that works. Getting caught short in public is distressing. I had severe diarrhoea for a year during my Herceptin and Perjeta treatment so at the moment this is manageable , take my emergency kit everywhere. Will take your advice re. dvt as that would be all I need. Marli xx

[kirky_68]

I know what you mean. I spend my life in my skechers but they don't really go with a frock. Though I believe they have started doing sandals. Not sure if they would be as comfy as the go walk 2s and 3s wich are amazing.

[marli]

It's the comfortable footwear I am finding a challenge. Going to a smart restaurant for hubbies birthday and not sure what I will wear. Slippers are not elegant !!!

[Moijan]

Yes Marli, I agree with Barton...I too had an awful first twocycles which really calmed down when onc reduced the dosr....its very common to be shoved on the highest dose for your weight and then need a reduction!

i had diarrhoea in the library..very embarrassin, vomied like a pregnant lady and got an early reduction...also got a svt from lying listlessly on my bed...both Cape and prochlorperazine list cltos as something to watch out for... So you need to keep active...and need comfortable footwear.

drink loads of water too.

love and hugs,

Moijan💚💚💚

[Barton]

Marli, good to know you are seeing your Onc soon. I am pretty sure your hand and foot symptoms are due to your raised dosage, but obviously I am not a doctor. If you are really distressed, I think you ought to contact your Oncs secretary asap.

I would suggest being careful with wearing flipflops - you don't want to end up with sores between your toes where the strap goes. A lot of ladies on the Forum recommend crocs as comfortable to wear. I don't have any myself, so can't personally recommend them.

Sorry I can't be of any further help.

Hugs. Barton.x

[marli]

Thank you all for your advice. I am seeing my onc on Wednesday and intend speaking to her then. I have only taken 6 anti-sickness tablets over the two rounds (6 weeks). and have the metaclopadin (spelling) because the others make me very constipated and she advised these would be better.

The "gaseous emissions" - WOW. I am quite an expert at that and unfortunately it does not smell pleasant. Remember that from first lot of chemo in 2009, caused much amusement of my BCC forum - there was a whole thread about it. the things we have to put up with.

Was wondering if it was normal for the feet and hands to go so fast (hands starting now). Going out for dinner on Saturday for hubby's birthday and am not sure what shoes to wear because I am living in slippers. Think it is going to be my old FitFlops - very elegant, not,

Thank you ladies I feel much better than yesterday , it is amazing what a little support does.  Marli x

[Barton]

Hello marli, so sorry to read you are having such a hard time. That dose seems very high to me - I suggest you follow Kirky's advice and speak to your Onc. You are obviously finding the additional dose a lot harder (and I'm not surprised!)

As to the extra "gaseous emissions", yes, I suffered from that for a while after starting, I think.  It has definitely settled down for quite some time now. Still get the big D, but have never had nausea on Cape. You need to speak to your Onc about that, too, although if he/she reduces your dose that may solve that problem - horrible, I know. Can you ring your Oncs secretary or something, and ask about reducing your dose now - hopefully your Onc would get back to you today.

Good luck, and hugs. Barton.x

[nicky08]

Hi Marli and sorry to hear you're suffering so much on Cape. It sounds like it was quite a hike in dosage this time around and coupled with the fact you've lost a stone no wonder you're feeling so rough. Definitely contact your onc, or his/her secretary who should be able to get a message to them. I felt awful on my first round of Cape (back in 2013) and got an immediate 20% reduction in the dose. I too lost a lot of weight so I think I was still probably on a full, 100% dose anyway as it's based on weight and height. I also found I didn't need anti sickness tablets, for me the nausea was all in my mind from struggling with it on FEC. However I do know it's worth checking out various anti sickness meds for those that do suffer with it - metaclopromide absolutely spaces me out whereas I tolerate domperidone very well. Hope you can get this sorted ASAP as there's nothing like the SEs getting you down and our oncs want to get the balance right between effectiveness of the drugs and the toleration of the SEs.

Nicky x

[Sandra59]

Hi Marli,

Sorry you are struggling with cape, speaks to your Onc about the side effects, I am on 500mg of Cape, twice a day, and have had no real problems.  I am now on my 6th cycle and have just been put on Vinorelbine as well which has had a few more side effect including  the big D.  I did find on the first few cycles of Cape that I had chronic wind, all noise but little smell, but still quite embarrassing!  That seems to have calmed down now.  I do use lots of cream on my hands and feet but apart from  them being a bit red and my index finger being sore and itchy I have had no real problems.  I stopped taking my anti sickness tablets most days with Cape as I found they made me even more tired and I only ever felt slightly sick.

I hope things improve for you as your body adjusts, but do talk to your Inc who may be able to hangs or reduce your medication.

Hugs

Sandra x

[kirky_68]

Hi Marli

Ooh you have been unlucky, pretty much the full house of the most common s/e. My highest dose was 5000mg per day and I felt dreadful too. My ONC knocked my dose straight back down no questions asked so I really recommend you get appt asap and tell ONC what's been happening.

For your feet, have you tried bamboo socks after you've put cream on to keep the moisture in? i found they stayed softer for longer.

Have you tried a few different tablets for the sickness? I ended up with metoclopramide after a bit of trial and error.

The big D, luckily I take oramorph for backache which has the opposite effect so few and far between.

The only thing I can say for both is to eat little and often so tummy is neither empty nor full.

Hope you get it sorted quickly.

Big hugs

Paula

[marli]

Have just finished taking pills for 2nd week of first round and have found it quite hard. Feet started to go downhill after 2 days and I am finding walking quite hard. Followed advice from ladies on here regarding creaming etc and putting feet up.

Also developed diarrhoea and was sick a couple of times. Took anti-sickness a few times but think they make me feel unwell. Digestion like a tumble dryer and making loads of gas.

Is this typical?  Onc did raise dose to 4300mg per day from 3300 so feel that it is a bit high. Have lost a stone since last weighed in clinic 2 months ago and wonder if this contributes.

First time in 8 years of treatment that I have felt like crying.  Need a little reassurance.

Hope you are feeling better racer and Barton.

Marli xx

[Barton]

Thanks, George, for your reassuring post! 

Happy birthday, racer. Hope you have a great day.

Hugs. Barton.x

[george]

Hi racer

Happy birthday. Hope you gave a good day. 🎂

George x

[george]

Hi Barton,
Hope you get your treatment plan sorted. Regarding SEs, my first treatment gave me awful SEs which made me think it was working effectively but it wasn't, quite the reverse, as TMs shot up so SEs not always reliable barometer of how effective chemo is. Also, think we just get used to some of the SEs. Anyway, good luck with whatever you decide.
Have a good week

George x

[Barton]

Hello Moijan, thanks for your message. Yes, trying not to jump the gun. But have noticed my body is reacting less each time to the Cape - which is good in one way, but I'm thinking also means the little C b****rs are also adapting. Keeping fingers crossed though.

Good luck with your treatment, and I hope your thumb improves soon.

Hugs. Barton.x

[Moijan]

Racer, yes, Barton is very wise....naturally hubby is worried tho, as you must be too....have you both each got counselling support, should you wish?  I have it from time to time....its a bumpy road....

Barton, funnily enough, my thumb is a bit sore and red this time...had my lymphoedema sleeve on during chemo, which may have kept the eribulin in the thumb area instead of letting it flush out.

i do hope your meds get sorted....you have had a good run on Cape, hopefully you can stay on it?

am awaiting my scans next month to see what the jury think re Eribulin xx

Moijan💚💚💚😎

[Moijan]

Racer, you are a real star...i have been reading "the Cancer Whisperer" she is a star too....and she has been where we are....might be worth a read....she too stuck out for the treatment she wanted and really pushed her oncol....this is a tough journey we are all on....but I agree with the others...you are  taking the lead on your treatment and are in charge Racer....good for you...you are an inspiration. Xx

thinking  of you, lots of love,

Moijan. 💚💚💚

[Barton]

Glad you got your daughter sorted out, racer. I should tell hubby to stop Googling - I found out something that I wished I hadn't after I did it a while ago.

My feet are fine, thanks - haven't had any trouble with them for a good few months now, thank goodness. It's my thumbs I am getting problems with at the moment, although during break they improve a lot. I'm currently on another break from Cape (since last Thursday), while I consider my options re treatment for some of my mets. Probably won't be back on Cape afterwards, but not sure yet. I would rather not go into details at the moment.

Hugs and good wishes. Barton.x

[racer]

Thank you for your kind words and encouragement Barton and George. Trying to think of other things such as my Daughter's Prom .Felt like a rubbish Mum as not been able to sort her hair as our usual one has let us down . I have managed to sort someone out at lunchtime .so that had helped .
My hubby keeps googling about my condition which does not help soft depressed yesterday
How are your feet Barton ? Hope you are getting.
Sorted .
Have a good weekend everyone . Cyber hugs to you all xxxxx

[Barton]

Hello racer, yes as Deni (George???) says, hope you manage to both enjoy your birthdays. I am glad they have managed to get you your scan in advance of your holiday - at least it's out of the way then and you can concentrate on enjoying yourselves.

So glad you are sick less often - it's miserable leaning over the loo, isn't it?

Sorry to read you were so tired last Monday. Good luck with the Cape. Keep taking the pills!

Hugs. Barton.x

[Deni]

Hi Racer

you sound like such a lovely person and so strong. Sorry to hear you are having problems with fluid retention, it sounds very uncomfortable. I hope you and your husband have lovely birthdays and manage to get away for a well deserved mini break. Good luck with oncologist on Thursday

George x 

[racer]

Thanks Marli and George . Hello everyone , hope you are all enjoying the weather. I saw Macmillan Doctor who advised that I have an ultra sound on abdomen to see what the fluid is. The ultra sound will be next week as we are desperate to go on holiday for a couple of days . It will be my Birthday on Tuesday and my hubby's on Thursday . So the test is arranged for Thursday afternoon after seeing Oncologist.
I feel like I am pregnant . My hubby measured me last. Night and I was 43 inches and my legs 16 inches each one. I felt so depressed as none of my lower garments fitted. However they might drain the fluid off and put me on some diuretics or a drain in permanently . So I have a range of sizes in clothing for when I am bigger or smaller.
I have not been sick as much as I was before. To. E honest I cannot recall much of Monday only tiredness.just have to keep fighting and hope I. An stay on Cape. I feel it is helping me with my illness and feel stronger .
Hope everyone is ok and have a lovely weekend xxx

[george]

Hi racer

Sorry to hear that you have been feeling so poorly. Sending you lots of positive vibes and cyber hugs. Hope things ease up for you a little. Keeping my fingers crossed.
Try to relax as much as you can and let others look after you.

Hugs

George x

[george]

Hi Barton/Marli, yes I can sympathise with the big D. I remember it well. I got a toilet card from my local hospice. I never had to use it but it made me feel more relaxed having one, especially if I was going to the theatre or somewhere I knew I would have to queue to use the toilet. The dose reduction also helped. Hope your foot problems ease up, Marli, know how painful they can be.
Take care all

Georgex

[Barton]

Hello marli, no, I don't have one of those - never heard of one before! That sounds like it could be extremely useful! Definitely going to ask for one of those. I do have one of the special keys (Carolyn told me about those), which I got after I got PIP and my Blue Badge. Luckily I haven't had to use it yet. It's huge, though, and weighs a ton!

Yes, keep off your feet as much as possible - an excellent excuse to get your partner (if you have one) to do all the work!

Hugs to all. Barton.x

[marli]

Oh racer, that sounds a bit scary. Hope you get it sorted quickly. Understand you not wanting to stop chemo. Because I had to wait 3 months I was desperate to start it. Good luck. Hugs Marli xx

[marli]

Barton - do you have a McMillan toilet card. It tells people you are receiving treatment for cancer and may need the loo urgently. Used mine for the first time on Saturday at Boot's opticians. You get them from the McMillan offices in hospital. My friend got mine for me.

Thanks for the advice about keeping off my feet.  Marli x

[Barton]

Hello marli, sorry to read about your feet! Nasty, I know! The best thing to do (apart from creaming) is keep off them as much as possible. I know that's not easy. Also sorry to read about you getting caught short with the big D! Also nasty! I nearly had the same problem on Saturday - luckily we were close to the cafe where we had had lunch, so went back in there! They were very kind and let me use their loo again.

Hope things ease off for you soon.

Hugs. Barton.x

[racer]

Thank you Moijan , marli and Barton for the support. My messaging might be not right. Marli hope you feel more comfortable . Sounds very painful . Keep fighting .
Started Cape on Friday and knew I would have a couple of days. My Mum sat with me when my hubby worked his last night because I was talking irrationally . He did not want me tone on my own. My Mum literally sat with me just occasional shout to my kids if they had their tea. Not what I was expecting really .

Yesterday I was quite unwell. I had no co-ordination and could not hold a cup or mobile phone .My hubby thought I was on my way out . My stomach has swelled quite a bit. So putting feet up as much as O could .He rang Douglas Macmillan and have appt with one of the Doctors to review my meds and blood tests. I just don't want to stop Chemo as it is having a good effect.
Positive vibes needed from everyone xxxxx