Xeloda / Capecitabine - Your Top Tips, please?

[Carolyn52]

Sorry lyndyloo

That u are waiting for scan results ..I had to wait 5 weeks for my last one too so really did the squeaky bum thing and pulled up the big girl pants etc ...
Just enjoy Xmas. ..and we will all be holding your hand here for good results .
🌲🌲🌲

[nicky08]

Great news George, you can enjoy Christmas without the worry hanging over you.  However, not so good, Linda, that you are having to chase for your results and still not know them until after Christmas.  As has been said, don't they understand the stress this causes us?  I know our hospital put the results (ie image) of the scan on the system alsmost immediaitely but it is the radiographer's report that takes the time.  If the images clearly show some changes (either good or bad) my oncologist has told me before the report is in but if it's not really clear what is happening he has waited for the report to be written.  I have my CT between Christmas and NY and results hopefully first week of Jan but I have no idea if the report will be done in time.

Juma, sorry I'm now post menopausal so can't help with your question.

Nicky x

[Barton]

Hello Juma. Well done for your 2nd cycle of Cape. I think bleeding can be an se of Cape. The se list I have says that it can cause vaginal bleeding, especially during the early cycles. I too have been through the menopause, so can't help period-wise, but I do sometimes get very small nosebleeds (blood on handky when blowing, etc, but no dripping or anything - sorry if TMI!), and I have just finished my 35th cycle (numbering from 2014 when I started, but have had several breaks inbetween).

I think this is one ocassion when Googling might help - being very specific with the query - such as "bleeding as side effect of Capecitabine". I had to Google breathlessness as an se, which I get quite badly, as it wasn't on the se list. However, it is a known thing, but tends to be restricted to the age group 55-75-ish (to which I belong), before which it isn't an issue and after which it tends to subside. Very strange.

Good luck with your future cycles, etc. Please keep in touch and let us know how you get on.

Hugs. Barton.x

[LYNDYLOO]

Hi All

Rang hospital regarding scan results. Still not reported so have to wait till 8 January. Shocking really my concern if treatment is not working could be difference between life and death.

I am lucky regarding tablets finish my 4th cycle Tuesday next week and don't go back to chemo unit Thursday 28 least I can have s lie in if I want to.

Regarding time between tablets I usually allow 10 hours between as I get up at 8 and have tea at 6. Thought the instructions were to allow 10-12 between.

I have blood pressure tablets to take and I don't like to take all the tablets together.

Pleased everyone seems to doing well on this treatment.

Linda

[janieb]

Hi Barton and all
I have never been told it’s crucial to take them 12 hours apart although I try my best to . I go for 8 am and 8 pm . We usually eat at about 7 - 7.30 in the evening so that works for me and if we eat early I just save my pudding till a bit later . The hardest is if I’m gojng out or staying with friends
My menopause started when I first started treatment Juma so I can’t help there but hope it sorts itself out .
I won’t get results until after new year ! Im having a 2 week break as next round was due to start on Boxing Day and travelling south for Christmas.
Good luck to those waiting for results!

[Juma]

Can anyone offer me some advice on periods whilst on capecitabine?

I'm now on my second cycle of CAP and my oncologist said that the chemo would more than likely dampen down my fertility. Although my period was late by a few days, it has been really heavy this week. I spoke to my BC nurse this morning who had never come across it as a se before and asked me just to keep an eye on it.

Does anybody have any experience of this? x

[Barton]

Hello George. I'm so pleased for you! What excellent news! As Linda says, a weight off your mind over Christmas - well done 🤗! Sit back and enjoy.

Unforthnately, like me, you will be on thd peachy pills Christmas day. However, I asked my Onc last time I sas her, if it wld hurt if for 1 day (2!, jnc.Boxing Day) I didn't take my pills at 6am instwad took them when I woke up. She said that it would be perfectly ok on such a short term basis. So relieved as that's the 1 thing that I really hate - having to get up at 6 to take the morning pills.

Anyway, have a rest and a celebration..

Hugs. Barton.x

[LYNDYLOO]

Evening George

That's really good news so pleased for you. Still heard nothing about my results yet not even got an appointment through to see oncologist . Think I
will ring the hospital tomorrow to see whether the scan has been reported.

I often think if I did not chase appointments I would just get lost in the system. I never receive any appointments unless I chase them.

Least now you can enjoy Xmas without worrying about results.

Linda


.

[george]

Hi Oggy, Lyndy and Barton

Thanks for thinking of me. Pleased Cape is working for you Oggy and that you are pain free which means you can have a good quality of life. I have mets in a number of bones, but treatment has kept bones stable for almost 3 years (next March).
Regarding my scan(had MRI of liver), got my results on Tuesday and was quite amazed as one met has disappeared and the other is now the size of a dot ( whatever that means). I really wasn't expecting such good results as I am on a reduced dose of Cape. Such a relief, for now anyway.
On week off so enjoying a drink at the moment. 😊Start cycle 6 next Thursday as long as neutrophils hold up.
Had lots of snow here in the Midlands; it was all very scenic but glad to get back to normal now.
Hope all well with everyone. Have a good weekend 😊
George x

[Barton]

Hello George, Oggy, Linda and everyone else. It seems to be fairly good news (or at least neutral news😁) for most people at the moment.

Sorry to hear you now have some bone mets Oggy, but as Linda says, many people stay quite stable for a long time whilst having bone mets.

Your journey to hospital sounds horrendous, Linda - how many miles is it? Or is it tiny roads that take ages?

Hope you get your scan results soon, George and Linda.

Hope everyone else is coping ok at the moment. Not a flake of snow in Devon at all! To quote Hill Street Blues (anyone remember that?), lets be careful out there.

Hugs to all. Barton.x

[LYNDYLOO]

Evening Oggy

Pleased u have some good news regarding cap. Least u can relax little for Xmas.

If it turns out it has gone to bone there is alot of treatment for that.

Until August this year I was treated for bone mets only for 8 years until a spot turned up in liver.

Try not to worry easier said than done through.

Linda

[oggy]

Hi al got my scan results this morning. good news and bad news. Capecitabine has clearly done something as no growth in tumours in my pleural lining but now show lesion on my thoracic bones so suspect it has spread to my bones. Bone scan to be arranged over next few weeks, they seem surprised that I do not have lots of chest pain, but other than odd twinge that I put down to nerve damage from the biopsy I am pain free just get tired and breatless very easily. So good news for xmas but yet another waiting game.Hope you had good results from the scan George

[LYNDYLOO]

Morning George

By that is a long way to get to hospital. Have you got much snow where u are? We have been lucky we only had a covering last night.

Don't think hospitals realise how worrying it is for us waiting for results.

Good luck with your scan results.

Linda

[george]

Hi Lyndyloo,

Seeing onc tomorrow afternoon so will have a morning of anxious waiting. Not sure whether results will be ready as only had scan a week last Saturday so might have to wait until week after. Takes over an hour to get to hospital and onc always running late so expect I will be hanging round a lot of tomorrow. Oh well.

Good luck for your results. Hope you hear soon. Have a good week.

George x

[LYNDYLOO]

Evening George

Just a quick one any news regarding your scan results??

I have still not had my results yet or not even had an appointment through yet. Hopefully I will hear something before Xmas.

Fingers crossed for you.

Linda

[Moijan]

Yes fingers crossed

Moijanx

[oggy]

Hi there I too am waiting on results from CT scan think we all need a good christmas present from the c word this year. Hoping my results are there next week when I go for cycle 6

feeling okay otherwise hope you are too

[Moijan]

Hi George, Janie b

no George, didn't use the bike as have what I think of as nakkered knees, but it was donated apparently by a grateful patient...and yes I agree! Suppose tho that money would be used on other resources...too many priorities maybe?

[janieb]

A fitness bike is a great idea ! There should be some in every hospital! Don’t get my results till after Christmas so trying hard not to think about it .
Hugs 🤗 to all , keep well and avoid those bugs x

[Moijan]

Soooo hoping so.George😍

Ward had a fitness bike on it for patients...😳

Hope  everyone is doing wellxx

Moijan💚💚💚

[george]

Hi Moijan

Hope celulitis has been sorted and antibiotics worked. Never a dull moment with sbc, is there?
Have a good day.
Hope all well with everyone else.

George x

[george]

Morning Janieb,

Good luck for scan today. I agree, the waiting is always the worst as our minds go into overdrive🙄At least you have planned something nice with your sister afterwards. It has been years since I visited Glasgow, but really enjoying it so far. Off for some sight seeing in a minute😊

George x

[janieb]

Good Morning All
I’m getting a scan today! I’ll be keeping my fingers crossed for Linda and George. I hate that waiting for results it does my head in ! I’m sure I have fluid returning , if not I’m getting fatter! I have been eating lots though. I’m in Glasgow today too after appointment I’m goinf to see the lights with my sister.
Hope you are all feeling well.
Janie x🤞🏼🤞🏼🤞🏼🤞🏼

[Barton]

Glad your scan went OK, George. Hope yours did, too, Linda. Enjoy Glasgow, George. I have never been, but would love to see the Rennie Mackintosh buildings, etc.

Sorry you have had to join us, Lily. Hope it goes well for you. Let us know how you get on.

Hugs to all. Barton.x

Ps.Moijan - hope you are OK now.

[LYNDYLOO]

Hi George

Hope you do get your results then. Fingers crossed. Enjoy trip up to Glasgow with hubby.

Linda

[george]

Hi Lyndyloo

Had my scan on Saturday and seeing onc a week on Tuesday so hoping results ready by then. Got a few distractions to keep me busy. On train to Glasgow at the moment as husband us working up there so going to join him for a few days😊Have a good week and hope side effects remain relatively mild

George x

[LYNDYLOO]

Morning All

Well that is the CT scan done now it is just the waiting game. Hope I get results before Xmas.

Hope everyone is doing OK.

Linda

[Moijan]

Yes have a good weekend....am in the hotel having Iv  antibiotics...my choice....to get this cellulitis knocked on the head.

Moijanxx

[LYNDYLOO]

Morning Lilly hope all is going well with you.

Just finished 3td cycle not to bad at moment. Having CT Sunday see how well the treatment going.

How you finding Cap at moment?

This forum is really good if you are feeling low or have any questions about treatment

Have a good weekend everyone.

Linda

[LilyFB]

Hi Linda
I’ve just started exactly the same as you tonight.
Came on to find tips too!
Going to plod through this thread. Hope all going well xx

[george]

It is interesting how different oncologists do have different approaches. My oncologist doesn't ask me whether I want my TMs, he just requests them on the blood form. Think that is because mine have been super reliable so far. He did say he doesn't use them with all his patients as they can be misleading. It just means that instead of being anxious every 3-4 months when it is scan time, I am anxious every 3 weeks😞
Good to hear SEs not too bad for everyone. I start cycle 5 tomorrow. Dose has been reduced to 1,500 twice a day.
Enjoy the rest if the week

George x

[Moijan]

Oh, how irritating for you Lindyloo......if you had them before...

i think its its awful that it depends on which onc you have...etc......

well you you could ask again.....I remember asking for them initially..being told they aren't reliable......have had them done since mets tho....and they did rise spectacularly last year.....but are better Now.xx

[LYNDYLOO]

Evening Moijan

I used to get them done all the time when I was going through chemo in 2009. In fact the oncologist I had then before she retired used them only until 2014 . The new oncologist does not seem to use them as an indication to how treatment is going she tends to use scan results instead.

Hope you are doing OK. Can't believe it is only 4 weeks until Xmas again. Years seem to get shorter as we get older. Marzipand the Xmas cake today.

Linda

[Moijan]

Linyloo,

''tumour markers are substances  from your bc within the blood, which give them some idea about how active the cancer is...they can be misleading and often with primary's they aren't done....they are expensive 

Mx

[LYNDYLOO]

Afternoon George

Can I ask what tumour markers are? I have not had them done recently. I keep asking chemo unit when getting bloods done all they say it is quite expensive to do them.

Nice to have good news.
Linda

[LYNDYLOO]

Morning Barton
Thank you for your good wishes regarding scan results. Apart from being more tired than usual not had any problems. Which makes me wonder is it.

Janeie
That is really good you have lost weight. That is probably why you are same dose as me as I am 5ft 5 and 10st 7. Feel on this treatment I am really hungary all the time. I was the same when I was on chemo back in 2009. Although then I lost weight went down to 9st 4. I have got a feeling I am not going to loose any weight this time round.

Linda

[janieb]

HI All
Thanks for the advice. I’ve been struggling to keep off my feet but it’s actually not too bad. I was just worried it might get worse. hoping it will go now I’m on my week off . my dose is 3 x 500mg and 2 small . Are they 150mg . Which would be the same as you . I’m 10 stone now as lost 2 stone due to total change of diet ! No sugar dairy or meat. Sunny here on West Coast of Scotland at last had a perfect cycle to yoga this morning. Good luck with the scans to you both ! Big hugs 🤗 xx

[Barton]

Hello George and Linda, just a short message to wish you both the best of luck for your up-coming scans. I'll be thinking of you both.

Hugs. Barton.x

[george]

Hi all

Yes, I agree, keep moisturising. My hands are very dry at the moment and skin is cracking in places. On a positive note, had results of TMs after 3 cycles and they have gone down which was a relief.
Neutrophils had gone up which meant no delay to treatment so a good day overall. Won't get too complacent though as have scan on Saturday so will see what that brings.
Have a good day everyone. It is cold. Brrr.

George x

[Barton]

Hello Jane, sorry to hear about your very sore feet - been there, done that, as they say! Not recently though, thank goodness. Jan is right - moisturise as much as possible, and also try and stay off them as much as possible for a couple of days. It did subside for me, and have not had it as bad for ages. I Do still get the warm tingly feeling almost all the time at night, but not the walking on hot coals and broken glass feeling (impossible to describe to someone who hasn't had it!).

I hope you feel better soon.  Hugs. Barton.x

[Moijan]

Lindy thank you...but much more freedom on Cape...I miss that and I'm not partial to injections at all...but needs must as I've worked through many of my options..

Mx

[LYNDYLOO]

Morning George

Thank you for your reply regarding scans. I going to ask the next time I see my oncologist regarding having an MRI scan as they seem much more accurate on liver mets.

Good luck for Saturday.

Linda

[LYNDYLOO]

Morning Jane you must be at the same stage as me just finished 3rd round today.

Upto now not had the problem with feet and hands although it is still early days.

Can I ask what dose you care on. I take 1800 twice a day for 2 weeks.

Moijan thank you for your reply regarding scans. Don't think hubby would be much good though as hates going hospital's.. I tend to go by myself as hubby would just sit there.

I will be pleased when scan is out of the so I can concentrate on Xmas.

I do like the idea of your treatment where you have injections in bum and you have nothing else to worry till you go next time. Plus it must be alot quicker at chemo unit.

Jane hope your feet improves soon and you get your appointment for scan.

Linda

[janieb]

Forgot to sign off ! Jane xxx❤️🐝

[Moijan]

Yes, Janie,

symptoms like yours  can be par for the course, but often get better...if not speak to the onc about varying the dose...I had the runs in my library which brought about my dose variation!  It's an effective drug with lots of independence so do give it a fair whack...most other chemo involve drips!....drink loads of water, moisturise your feet and you could try udderly smooth..I found it really useful on this drug.....oh and keep active to prevent any blood clots...xx

Love and hugs

Moijan💚💚💚

[janieb]

Hello 👋
I’m just ending my third round and have started to get hot feet like I’ve been walking on hot sand for too long ! Also my hands are very dry so I’m guessing my dose might be reduced. Does anyone have experience of this . I really want to know if it goes away in the break week as I have a lot to do work wise. I am trying to take it easy at the moment but hoping it will be better at the end of the week .
Good luck with your scan Linda . I’m waiting for a date. I’m Feeling really well and fitter than in the last 2 years so I’m really hoping my feet and hands will be ok .

[Moijan]

Hi George🤗

Fingers crossed that that its working..hope side effects are improved. Xx

M💚

[george]

Hi Lyndy

I used to have CT scans all the time, but I developed 2 new liver mets in August so MRI is to check on them and whether Cape is working. Seeing onc tomorrow so, if all okay, will start cycle 5 on Thursday. SEs seem to be getting easier, but I am on a reduced dose.

Have a good week all

George

[Moijan]

Keep your chin up Linda....you will find oncs differ.....if you want an MRI, take hubby in explain you're worried and would like one...they are more expensive, very very booked up as very ill patients might be having monthly MRI .....and my onc got me to have both in the summer to double check something...they each slice the pictures a different way,

hugs

M💚💚💚

[LYNDYLOO]

Hi Moijan

No I am not in hospital. I am going for my CT scan after 3 courses of Capecitabine on Sunday 3rd December.

I was just wondering why George was having MRI instead of CT scan like me.

Thank you for your concern.

I seem to be coping OK on Cap at moment apart from feeling more tired than usual.

Hope your treatment is going OK.

Spoke to someone at the hospital couple weeks and they had started on the same treatment as you. She thought she was the first patient to have it at that hospital. Pleased it is coming more readily available.

Once again thank you your concern.

Linda