Xeloda / Capecitabine - Your Top Tips, please?

[Katherine2701]

Hi Hilsy, thanks for your response. I'm not on the lapatinib concoction so can't help you at all with that. Thank you so much for your recommendation of mirtazapine. I'm going to contact Ellenor tomorrow as I am not feeling confident about going on without some kind of anti depressant to act as a crutch for me. So sorry I can't help with your queries more Hilsy. Hugs to you for all your help though xxx

[2catlady]

Hi,thanks ladies,god it's a scary battle,they are so clever,I just wish they were on our side and not attacking us. Little #s
Xxxxx

[bertie1]

Moneck that's a good way of explaining it ,my onc explained to me that if cancer cells are small they don't show up on a scan and they are called micro metastese and these then become resistant to whatever treatment your on and start to grow again,so she says you have to try and keep ahead of them and as soon as they start playing up you have to continually change treatments as this tricks the cancer cells and starts to kill them off.Hope this makes sense ladies.
Kaye xx

[Bevlaar]

Thats a great way of explaining it Moneck. I just hope that my seeds stay well buried for a long long time!
Thanks! xxx

[Moneck]

To 2catlady & Bevlaar a friend / nurse who works on the chemo ward told me sometime ago that she explains how chemo works to older children/teenagers as being like weedkiller. You spray it on & it kills the weeds but does not kill off any tiny weed seeds in the soil that have not germinated. Hope this helps.

Monica

[Bevlaar]

Have a lovely holiday smartie...just what the doctor ordered! My pulse rate is always just under 100 around 96 or 97 resting! And my sats are 97. Yet I'm not anaemic. I have asked occasionally but they say I'm not...so does that mean the high pulse and breathlessness is not all down to low red blood count?
Mrs blue. .Thanks for the link.
Had my CT scan this afternoon. ..have asked if i can have result at clinic tomorrow otherwise will have to wait till next tues!
Love and hugz to all.....bev xxx

[2catlady]

Lol mrs blue xx thanks that's interesting now it makes sense .xxx
Oh smartie have a fab time in America,a holiday will do you world of good and I hope bloods recover ,but I'm sure they will with holiday.
Thanks ladies for info,hugs,Helen xxxx

[Smartie]

Hi all Cape ladies. Just a quick note on red blood cells. All chemo can affect them including Cape although not normally as much as IV chemo. A low red cell count means you are anaemic and this can cause breathlessness, a high pulse rate and make you feel very tired. If it goes very low you will probably get a blood transfusion to perk you up. On Cape mine are hovering around the 95/97 mark, they did dip down to 86 a few months ago and I had a transfusion which helped.
Am now on a break from Cape for 6 weeks so hoping bloods will improve before I start again, and a holiday will help, off to America tomorrow!
Incidentally my toe nails have been affected too especially the big toes, thought I had a fungal infection but turned out to just be the Cape, hoping they too will improve during the time off.
Good luck to all.
Smartie x

[Barton]

Thanks for that mrsblue, that's very interesting. Best wishes, Barton.x

[mrsblue]

"Neuts" are neutrophils - not those things with tails that swim in ponds (lol - they are neWts)

Info from CRUK site here

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/what-is-cancer/body/the-immune-syste...

[2catlady]

Bev,I get a red chemo record book and they write results done,red,white,platelets and neuts(haven't a clue what neuts are ?)that's how I know my red blood is just slightly lower than normal. I think it's 115 for women and I'm 113. So I reckon they take a hammering on cap cycles.
Hugs,Helen xxx

[bertie1]

Morning ladies my Onc is the same she usually says yes your bloods are fine but she always tells me the results of my TM so I'm ok with that as I'm sure if they weren't fine she would say.I have problems with my kidneys from time to time so they keep a check on some sort of level with that and if the level goes up they usually tell me to see GP so he can monitor it as well .

Kaye xx

[Bevlaar]

Thanks for the info Barton....will ask about a card when i see Onc at clinic tomorrow...or at least about my red blood cells. After I've had my bloods done and then go in to see him he looks at the computer and just says "all your bloods are fine". Should i be asking for individual results? xxxx

[Barton]

Hello Helen and Bev, I had an Onc.appointment last week and I asked him about the possibility of having a chemo break in the future (hoping for a breast reduction op on the remaining one sometime in the future), but was worried that the cancer would then act like bacteria that becomes resistant to antibiotics. He said that yes, it could do, but certainly not at the speed that bacteria become resistant. So, presumably, the cancer does become resistant to the chemo, but over a much greater (hopefully) time period. Hope this makes sense. Good luck to all the Cap gang. Barton.x

[Barton]

Hello, Daisy, so sorry to hear you have had such a rough time! Poor you. I hope you are taking it easy now. And hope the new chemo goes easy on you. Best wishes. Barton.x

[Barton]

Hello Helen. I've never asked about my tumour markers either. To be honest, I never knew that something like that existed until joining the forum here. After my second cycle (I think), my Onc.asked me to go for a special blood test but I never got up the nerve to ask what it was for. I haven't had another of those since, though, so I don't know what it was telling him. Best wishes. Barton.x

[Barton]

Hello Bev, it's strange you don't know about your red blood cells - did your hospital not give you a patient record book? My hospital did and there is a section for the chemo records, a section for my blood results and a section for radiotherapy records. I have to take it with me each time I go for an appointment. I always make a point of checking my blood results. The only thing I don't get is a note of the calcium in my blood and I have now been told that it is quite low, so will have to restart taking the calcium tablets. Best wishes to all. Barton.x

[2catlady]

Hi,Bev,yes,I read that. None of this makes any sense to me either. I still can't get my head around why we can't be cured if chemo kills cancer. 😞
Hugs ,Helen xxxxxx

[Bevlaar]

Just a question ladies. Ive been reading a doc about how Capecitabine works and it destroys the dna in the metastatic cells preventing them growing and multiplying and thus causing them to die.
So...how do they still spread to other organs if the cells are being killed?
Sorry if i sound dumb!!

[Moneck]

Hi All, finished peachy pills this morning & saw Onc today for results of CT scan - much the same as before the tumour & fibrous tissue are stressing the right kidney during the day which resolves overnight (up for a wee every couple of hours). For my sort of tumour they are keeping close eye on tumour markers, how I feel & 3 monthly CT scans.

So far feet are feeling leathery but not sore, hands are fine. Red blood count good for me as have always been on lower side of normal!!

The tiredness & breathlessness I have had since this started last year, which is why we knew something was wrong with me a few months before I was diagnosed.When out with my sister she is often way ahead otherwise if we chat I tend to walk at her fast pace, 18 months ago I frequently walked a 20 minute mile!! 

Blood test Friday late afternoon, Chemo dept next Monday for next pills from Pharmacist but won't get markers as they only report them on files on Friday mornings!! On the Monday after I get pills I can ring BCN to check my file. Back to Onc in 6 weeks

Moneck

[mrsblue]

Hi capecitabiners! (waves hand with slight cracks in 2 fingers)

Yep, bloods can be affected by cape - my haemoglobin is low (platelets normal though) and oncs have been talking possible blood transfusion, tho not necessary yet.  Tired (but not as bad as fatigue I had when on eribulin chemo last year) and I admit to huffing and puffing a bit, not gasping for breath so I'm not sure if it counts as breathlessness. 

Yes again, big toes can turn nasty after a long time on cape - I had this problem after about a year, but this time it's ok so far.

Thanks for tip on bamboo socks, I'll give them a try - make a change from Body Shop cotton socks.  I wear these in bed, inside out so the seams don't cause discomfort.  Socks come off and I have fun hunting for them the next morning!

[2catlady]

Hi,daisy,thanks for your post. I'm thinking it is my red blood cells now as they just on border line last time even before I started,so it sort of makes sense now. I also have bone marrow involvement along with other bone,liver and lung mets too. Yes,it's quite a juggling act ,poisoning us a bit but not too much!

I agree with Katherine ,you get better information on here that from BCN. I don't have one now but last one was a disgrace to mac uniform . And Katherine's was the same too.
I hope you start feeling more your self soon Daisy and new chemo gives you great results,huge hugs ladies,Helen xxxx

[Bevlaar]

Thanks daisy...its really good of you to post this info for us especially as you're not feeling too well.
I started cape on 1st july and was only slightly out of breath on exertion then but its got worse since August. So was wondering if it was the Cape or not. Seems it could be a mixture of chemo and blood counts though as youve said, considering how many other ladies get the same. This week has been my week off cape and breathing's not half as bad.
Hope you feel better soon. Love bev xx

[daisy113]

I had 2 very good years on Cape but started feeling more and more tired. Onc suggested a break to help body recover. Initially I said yes but got cold feet thinking my 'prop' was going. Tried other things to relieve tiredness but it caught up with me and found out my haemoglobin red cells were low and platelets down hence tiredness and breathlessness. Chemo break for 2 months and body didn't recover on own so had blood transfusion but found out slight infiltration into bone marrow. Another reason for low red blood cells count. Started on new chemo 3 weeks ago and blood count and platelet count both improved a bit. Had second blood transfusion last week and today feel brighter less tired and less breathless. Have bloods checked tomorrow to see what levels are now. Quite a juggling act chemo versus blood levels! But bone Mets and liver mets stable-ish tho levels not yet back in normal limits which the Cape had fixed! Like reading the updates but not posting regularly as have had a few rough weeks.

[Mitch23]

hi all

Hope everyone is as well as they can be! just come back from barcelona. was fab. weather was fantastic and i bought a handbag! Happy days!!

Quality Street - I have REALLY sore big toes i thought it was my ingrown toenails but maybe its the cape? they've been infected as well. had antibiotics but it just keeps coming back! GP says i have to have them removed! YUK not a nice procedure and I could really do without it but they hurt sooo much and if i bang them its so painful. i have to put dressings on so that I can get my shoes on!

I must say the tips that you guys post are excellent! I love the bamboo socks!

Best wishes to all ! 

jo x

[2catlady]

Thanks bev,I read that low red bloods while on chemo can cause breathlessness and extreme tiredness ?!
I've been too scared to ask about TMs since first time on cap as mine have always gone up 100 every three weeks apart from when I started cap. Worried I'll jinks them! But I'll bite the bullet on Friday ( I think! 😉 ) and ask.
Hugs,Helen xxx

[Bevlaar]

Helen..dont know about my red blood cells. Ive never asked. Will ask though on Wednesday. Theyll give me the result from 3 weeks before so will it be difficult to tell? They always just say my bloods are fine....ive only ever asked about my tumour markers.
Bev xx

[2catlady]

Hi,cap gang,oh enjoy you last days of no peachy pills bev and QS xxx
QS,I use it in the morning( a bit squishy in socks lol) and at night on feet. I put it on hands morning and night and wear my Michael Jackson gloves ,( in house)until it soaks in ,otherwise I'm OCD with hand cream throughout the day. Aveeno is fab cream .
It's the soles of my feet that hurt if I stand and if they get hot in bed they feel like they're on fire! But no peeling or cracking yet.
Bev,has your red blood count been low when your very breathless? I worry mine is low with the breathlessness and tiredness. Well I'll find out on Friday ,yikes.
Huge hugs ladies,Helen xxxx

[Desi-2]

Hilsy I have been on Mirtazapine for 10months now but haven't had watery eyes really helps with my sleep though tried to drop down to 15mg but struggled with sleep again so back up to 30mg now xx

[quality_street]

thats a good idea, do you just use vaseline overnight or every time you put cream on. Onc just prescribed aveeno cream which is also good. Am going to try vaseline swell though. ps does your big toes really hurt at the sides, mine are really painful and have to put dressings on some days. Anyway start week off on Wed. yabadabadoo !!!

[Bevlaar]

Glad the vaseline is working well for you helen! Still working for me too.
I'm back on the peachy pills on Wednesday too ...if bloods are all ok xxx

[2catlady]

Hello,cap gang,hope every one is enjoying week off or coping with SEs.
Katherine ,your body couldn't cope if you didn't have week off and bloods wouldn't be good. Just think the little #s have had a good kicking on the two weeks and aren't strong enough to grow.
I'm feeling much more like me on my week off yippee.
I use the Vaseline all the time and found it the best thing to use. I put it on top of creams to hold moisture in.
If I stand my feet really hurt! Otherwise okay at moment.
Take care cap gang and long May peachy devil pills work,Helen xxxxxxxxx

[Hilsy]

Hi all again so Soz to jump in with another question I don't know where to ask, are any of you on lapatanib/tykerb as well as the above? I've been on 2 weeks and my face and eyelids are getting more and more puffy especially this last week and eyes real real watery now (but watering could be the mirtazapine I started a week ago).
Katherine you poor thing I recommend mirtazapine anti depressant. My Macmillan nurse put me on you take at night it helps you relax and sleep and you feel much happier the next day? Worth looking into trying out. I too worry that on Cape week off tumours start regrowing faster and feel unprotected but just think when we restart again our bodies are a little stronger to help the fight again xxx

[Katherine2701]

Hi Cape gang! Just finished my fourth cycle when I've had horrible SEs including sore feet and hands, breathlessness, exhaustion and sweats! Oh the sweats at night where I wake up dripping in cold sweat. Horrible. And I was low this time too, thinking about my mortality and having nightmares. Yuk! My feet aren't stinking but have peeled like mad so I'm starting the Vaseline recommendation but will try to get the bamboo socks too. I am so pleased I have a week off. I hope this doesn't mean those mean tumours will start to grow again but I couldn't go on without the weeks off. Anyway hey oh, already feeling happier I'm on my week off. Hooray! Hugs to you all. Katherine

[quality_street]

Good luck and hope you find them , they are called green treat at tkmax and come in packs of 3, hope they work as well for you as they do for me.Have been tired and a bit breathless myself, looking forward to week off next week.

[Barton]

Hello quality-st, thanks very much for the useful info.re.bamboo socks! Wow, would never have thought something like that would be soft! Will have to check them out. I have a very handy TKMaxx not far from where I live (previously a 10 minute walk, but now, with the breathlessness and legs that don't seem to work, more like a half hour slogl!). Thanks, and good luck with your second go at Cap. Barton.x

[Barton]

Kaye, so sorry to hear everything so sore. I comiserate! Hope the extra week off helps, but also hope you get cycle 4 tablets as scheduled. Best wishes. Barton.x

[quality_street]

Hi to all cape gang. Am on it for second time now, just finished 3rd cycle and hand/feet getting sore again. However, discovered socks made with bamboo (yes ,thats right) are really comfy, much easier on the feet than even pure cotton. They are anti-bacterial, breathable and sooo soft. They have them in TKmaxx but also got some in John Lewis, made by Joules, they are called socks fit for fox. Defo worth a try xx

[bertie1]

Hi Barton,Bev Helen ,Hilsy and th rest of the Cap gang .I finished my third cycle and have had to have an extra week off due to my hands and feet they were really sore but getting a bit better now,hopefully when I go to Hospital on Wednesday they will give me cycle no 4.i too found I get breathless whilst taking it and also get sore eyes.Hope everyone has agood weekend.
Kaye xxx

[Barton]

Hello, Hilsy, Bev, Kaye, Helen and all the rest of the Cap gang. Hilsy, I have to say my feet or other extremities don't stink. Have you thought it might be the latanib (?) that is making your feet stink, rather than the Cap? My extremities aren't sore at the moment either, thank heavens, although my thumbs are a bit tender. Just started cycle 6 on Thursday evening and already the breathlessness is getting worse. Had a really good day Thursday, though (compared to others recently, anyway). Hope everyone keeps well. Barton.x

[Hilsy]

Hi! Helen and bev in particular it's my week off too from 3rd cycle and I've too found this one more se's incl. breathlessness started fortnight ago but I also then started on lapatanib then with poss more se's.moving/talking makes chest tight, hurt, breathless and windpipe and lungs feel so inflamed and hot like massive chest infection for hours, goes with rest. Do you get it this bad?mets are in my lungs for one thing though so could be the tumours. Do you feel vulnerable in week off Cape?I do worry it's when tumours start to regrow especially if aggressive fast growing but hoping it still does some sort of work in that week off! Hugs to all hope you have a better week without the pills!!! Ps my feet bloody stink lol x

[Bevlaar]

Morning helen and rest of Cap gang! Week off helen..great stuff! I'm in middle of my week off too. Sure its the cape causing the breathlessness...doesn't seem as bad on week off...does yours?
Lovely sunny morning here and been a very warm night. Had to throw the duvet off! How strange for November!
Think I'll make my xmas cake this weekend...love to smell it cooking.
Should be a nice night for the fireworks display at the castle tonight!
Hope you all enjoy the weekend and not suffering too much from the dreaded s/e's
Love bev xxx

[2catlady]

Good morning cap gang.
Thanks Kaye xxxx
Just taken last lot of the peachy devil pills yippee,week off now. Felt dreadful yesterday so hoping next cycle won't be as bad.
Hilsy,no smell from my extremities!! God hope that's not another SE. My h and f have been okay so far and still on 4600mg. I'm wondering if it will be reduced because of breathlessness and extreme tiredness as it's obviously effected red blood cell. I know it sounds daft I didn't ring onc ward to tell them but I was just scared they'd keep me in !
Hopefully with week off I'll get back to normal and I'll tell nurse next Friday .well gobby hubby will,grrrrr.
Huge hugs ladies and enjoy week off xxxxxxHelen xxxxxxx

[bertie1]

Hi Helen hope you're doing okay been missing your roll call in the mornings.
Love
Kaye xx

[bertie1]

Morning Cap gang hope we are all doing ok this morning.
hilsy no my feet don't stink but they have been sore and peeling so have an extra week off.I have had watery eyes and also stinging sometimes so the Onc gave me some drops for them.
Kaye xx

[Hilsy]

Hi all on third cycle as well as been on lapatanib 1 week and funny question....is this making anyone's feet stink?! I have no feet soreness or peeling but my slippers reek after only a few hours! In addition do people have constantly watery eyes and any tips on this as im a heavy make up wearer to try and hide the mess that is my steroid fat face and bloody mascara and eyeliner keeps coming off!!! Hope you gals are doing ok and don't have feet like mine!!! X

[Barton]

Hello, Cw, how eloquently you put all my (our?) feelings about the tablets - dreading them, yet being grateful for them. As regards taste, mine isn't too bad, but coffee (which I love) tastes disgusting from about half way through the cycle to about the end of my rest week (just beginning to taste ok again, but start Cycle 6 this evening). I was told by my Onc this afternoon that I will probably be on Cap for as long as it works. So have appointment for Cycle 7 in 3 weeks. He is also going to book me in for another CT scan in 3 weeks. Best wishes to all Cap gang. Barton.x

[Bevlaar]

Well its strange but my cracked and peeling left foot has totally healed since using the vaseline! Silky smooth again...just a shame about my thumb tip...ouch! xxx

[bertie1]

Hello To all the Cap gang hope we,re all doing ok.Bev my feet and my hands have peeled that's why they have given me the extra week off to give them chance to recover,they have been really painful but hopefully the extra week off will sort them out.
Take care all
Love
Kaye xx

[stresshead]

Hi ladies, just read the last few pages of threads and so happy to know i'm not the only one who dreads the pill packet twice a day and gets excited when i i see there are only a few left. How true when you say Oncs really dont have any idea what its like. I get so down knowing i'm taking these things but wont be better at the end of it....i am really grateful that such drugs exist , of course but nevertheless really struggle with everything. Reassurring to know i'm not the only one who is wiped out all the time...also now struggling with stomach gripes/runs and the dreaded sore fingertips. Can cope with that at the moment...what i am really struggling with is the taste change issues..i havent lost my appetite but find it difficult to eat when nothing tastes as it should and very difficult to eat when i dont want to simply because i have to take the tablets. i was hoping this was down to the dotaxol rather than cape but seems not. Just had 5th cycle...roll on Sunday..no more tabs for 11 days!! Best wishes to all. x