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Xeloda / Capecitabine - Your Top Tips, please?

kirky_68
Member

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

Hi Lyndy and George.

Me too, seems to be the dose of choice ๐Ÿ™‚

I am permanently knackered but apart from that doing okay on this dose. Scan results next week so fingers crossed

george
Member

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

Hi Lyndy

You are on the same dose as me. SEs are manageable although I still get a dodgy tummy now and again and feet are a little tender. However, SEs much milder than when I was on full dose so can't complain and, most importantly, it seems to be working. Just on way back from seeing onc and TMs have fallen again.๐Ÿ˜Š

Have a good week all

George x
LYNDYLOO
Member

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

Evening George

Chemo unit changed my to 1500mg twice a day upto side effects are less. Mentioned to oncologist regarding loosing my bottom eye lashes. The reply was I must be very sensitive to treatment as none of her other patients had lost their eye lashes. Eyebrows have been patchy since finishing chemo back in 2010. Asked about having them micro blading which is similar to tattooing. Cannot have as might get an infection with neutrifils been low. Bummer as hate having to draw them on each day

Hope u are feeling well on the reduced dose.

Linda .

george
Member

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

Good news, Lyndy. Stable is always good to hear. Hope the SEs continue to be mild. What dose are you on now?
Good luck for your results, Moijan

Have a good week all

George x
LYNDYLOO
Member

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

Afternoon everyone

Just to let you all know saw oncologist today and was informed all stable bone and liver mets go back in 8 weeks.. Started back cap last Friday. The side effects I was having have not reappeared yet hopefully with reduced dose they don't reappear fingers crossed.

Hope you all had a good weekend.

Moijan hope you have good scan results on Wednesday.

Linda

LYNDYLOO
Member

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

Evening Barton, George, Moijan

Thank you all for kind words. Will just have to see whether side effects improve. Feel great at moment more like my normal self. It is strange isn't we sort of get used to how we feel taking tablets but when we stop taking them how much better you tend to feel.

Linda

Moijan
Member

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

Hi Lindy,

 

my onc used to say that 1.8 nutraphils was fine for me to have iv chemo...so I guess that could be their standard.

 

good luck with it xx

 

Mx

george
Member

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

Hi Barton

I hope you had a good Christmas. Pleased to hear SEs are not too bad for you on the lower dose.
Hi Lyndy, good news your neutrophils have gone up and your dose has been lowered. We are on a chemo so I suppose there will always be some SEs, but the milder the better ๐Ÿ˜Š๐Ÿ˜Š

Have a good weekend all

George xx
Barton
Member

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

Hello Linda, glad your neuts are back up (although not as high as you would have lijed). Your new dose is tge same as mine and George's, and we are both doing better (se wise) at that level. I hope it trwats you kibdly, too.

 

George - so glad to hear you are better after your nasty virus, and that you a.got your Christmas dinner, and, b.got to go on your trip to London! Excellent!

 

Janie - I hope you are doing better now. I hope you get your scan results soon, and that they are good.

 

I hope everyone else is doing well.

 

Hugs. Barton.x

LYNDYLOO
Member

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

Afternoon George and all cap crusaders

Went to chemo unit today neutrifils have gone up to 1.8 which in my opinion still abit on the low side. The dose has been reduced to 1500mg in morning 1500mg night. Also said one the reasons for reduced dose kidney function slightly low. Anyway hopefully the reduced dose helps.I asked what the lowest dose you can be on. 50% was the reply. So that would mean for me. 1800mg all together per day as I was on 3600mg. Looking forward to to seeing oncologist on Monday.

Have a good weekend everyone.

Linda

Moijan
Member

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

Hi ladiesxx

 

Moijan๐Ÿฆ‹๐Ÿฆ‹๐Ÿฆ‹

LYNDYLOO
Member

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

Evening George

Pleased u are finding lower dose of Cap is easier to cope with. When I go tomorrow to chemo unit to see whether neutrifils have gone back up. Even if they have have gone up I will not be happy staying on same dose. Have felt better whilst not on tablets.

Must be a common side effect for neutrifils to go down. Not had this problem whilst on Everolimus even though low neutrifils was a common side effect. Whilst on that my neutrifils were 5.5.

Anyway will let you know how I get on tomorrow.

Linda

george
Member

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

Hi Janie, yes despite all the horror stories at the moment, the hospital was very good. At least I managed to have my Christmas dinner before I became ill๐Ÿ˜‰
Neutrophils are funny things, Lyndy, well mine are anyway. When I went to hospital with a fever last week, they were 2; the highest they have ever been and I was halfway through cycle 6 of Cape. I have felt okay on the lower dose. Still get dodgy tummy now and again and feet a bit sore, but can't complain really. I am keeping the faith๐Ÿ˜Š( well, until next Tuesday when see onc again ๐Ÿ™„)
Have a good week

George x
janieb
Member

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

Hi George
Glad you are feeling better ,the same happened to me last Christmas. I ended up in hospital in the middle of the night with a fever . They did the all tests in the night and was home in the morning. I was very impressed, got Home in time for Christmas Eve although my husband did the shopping which was a bit of a disaster๐Ÿ˜ฎ
I was waiting for results of scan since 5th Dec . Iโ€™m not sure scans show up much with me. All they seem to do is confirm the amount of fluid in Peritoneum but I can feel that anyway .
Hugs ๐Ÿค— Janie xxx
LYNDYLOO
Member

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

Evening George

Thank you for your good wishes regarding scan results. I am going to make a list of all my side effects when I see oncologist.

Makes me wonder if neutrifils go so long what are they when we are actually taking the cap tablets. Bit scary really..

Are you feeling well on the reduced dose?
Linda

george
Member

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

Good luck for scan results on Monday, Lyndy. I have not had a CT scan for 6 months but had an MRI last month so I suppose I have a scan about every 3-4 months, might have a longer wait sometimes.
Don't worry if you do have to have a dose reduction as Cape seems to be just as effective on lower doses.

Have a good week all x

George
LYNDYLOO
Member

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

Hi George

Pleased you are feeling better and were able to go to London.

I am going to hospital tomorrow to get bloods down then I have appointment at chemo unit Thursday. I have felt alot better whilst off tablets. Like you I might need dose reduction.

Think why eyelashes have fallen out is because extreme watery eyes and ruuny nose. Happened whilst on Fec and Taxetere in 2009.

Anyway scan results next Monday 8. How often do you have scans whilst on cap?

Happy New year to you and your family.

george
Member

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

Well worth the wait for such good results, Janie. Great news. Were you waiting for scan results?
My feet are sore too so keep slapping on the Flexitol which does help.
Go celebrate your good news๐Ÿ˜Š
George x
janieb
Member

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

All stable, no change thank goodness,they are keeping an eye on my feet ๐Ÿ˜€ xxxx
janieb
Member

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

Not sure where โ€˜tableโ€™ comes into it โ€˜lol!!
janieb
Member

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

Hello Ladies
Happy New Year to you all ! Iโ€™m sitting a table the Beatson waiting for my results now. So Iโ€™ll update later . Hundreds of people so could be a long wait . Having had virtually no hair for two years, my hair seems positively lush on Cape ! It is in fact a lot thinner than it used to be and Iโ€™m not enjoying shaving my legs again ! I also went on the Look Good session - it was great and my friend who is more into makeup was really impressed with the free products . I hope your eyelashes come back soon, Iโ€™m still having feet issues which is a pain as I hate sitting down!
Wishing you all the best for 2018 !
Janie xxcc
george
Member

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

Hi ladies

Just wanted to wish you all a Happy New Year๐ŸŽ‰. I was laid low for a few days over Christmas as caught this awful flu that has been doing the rounds. Had a high temperature so had to go in to hospital to get bloods checked; they were ok but onc gave me a 5 day Cape break as temperature was high. Managed to feel well enough to go to London for a few days at end of last week. Was worried I wouldn't be able to make it which would have been a real pain as we had paid for everything in advance. Anyway, we did and managed to have a good couple of days. Back on Cape now๐Ÿ™„
Lyndy my neutrophils have been low this time on Cape. On 3 occasions they were below 1.5 so just delayed treatment for a few days by which time they recovered. Onc also reduced dose to 3,000 mg a day. Regarding eye lashes, mine have been fine on Cape, but I used to use an eye liner pencil to get some eye definition when they fell out with Taxol. Like Moijan, I have been on a Look Good Feel Better make up course; it was excellent.
Hope everyone is doing okay and that 2018 is a kind year to us all. Think we deserve a little kindness ๐Ÿ˜Š

George x
LYNDYLOO
Member

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

Evening Nicky, Barton, Moijan

Thank you all very much for your kind suggestions.

I will certainly ask about the Macmillan centre.

Hope you all have had a good Xmas and all the very best for the new year.

Linda

nicky08
Community Champion

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

Hi ladies - and a Haloy New Year to you all.

Linda - I lost my eyelashes, and eyebrows, whilst on Eribulin (although this had never happened whilst on other chemo when I lost all my other hair and also didnโ€™t happen on Cape). I used false eyelashes which were very natural looking and also very easy to wear. They were eyelure ones, the ones marketed under the names of Girls Aloud. The ones I found best were the ones under Cherylโ€™s name called โ€˜first dateโ€™  and Superdrug and Boots sell them. Iโ€™ve never used them before but found them really easy to apply and wear although because Eribulin made my eyes water a lot I did have to re-apply them if I was wearing them all day but got used to doing these running repairs and used to carry a spare tube of the glue with me! Anyway, hope that helps. I also used a brow pencil and powder combination that worked for drawing on my eyebrows.

Nicky x

Barton
Member

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

Hello Linda - firstly, no se you find distressing is "trivial" - don't let anyone tell you that!

 

Secondly, I'm afraid I haven't come across that one - my hair has thinned a lot since being on Cape, but I still have my eyebrows and eyelashes. I think Moijan's idea is a good one - try to find somewhere professional that can give you good advice.

 

 

Sorry I can't be of more help.

 

Hugs. Barton.x

Moijan
Member

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

Lindy, I went on a look good feel better course with Macmillan...see if there's one near you...lots of freebies makeup and expert advice about all aspects of make up.

 

yes it happened to me...they are just growing back...but I was more upset re my hair really.. you could wear false lashes on the top, but I think you might get used to it soon...they will returnxx

 

LYNDYLOO
Member

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

Afternoon cap ladies

Wonder has this happened to any of you woke up this morning eyelashes virtually gone. I know say hair can thon but I did not expect to loose eyelashes again. Eyebrows you draw on but I don't know a solution regarding eyelashes. I know it might seem trivial but I can't help the way I feel. Normally wear eye makeup and mascara when go out feel naked.

Your help with any suggestions would be much appreciated.

Linda

LYNDYLOO
Member

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

Afternoon Barton

Thank you for your reply. Waited 2.5 hours to be told cant have tablets. Have to go back on 4 January. I have same problem back in 2009 when on Fec. Had to have an injection couple of days after chemo to put my neutrifils back to normal. The annoying thing is I told oncologist before I started this treatment. They think they know better. Anyway going to enjoy few more days off tablets. Every cloud has a silver lining.

Hope you and everyone have a very happy New year.

Linda


Barton
Member

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

Hello Linda, sorry to hear of your low neutrophils. I haven't had that problem (yet, thank goodness), but have had low Haemoglobin and have had to have a delay for pills because of a blood transfusion. Everything all right after that. I don't have any experience of a combination treatment, I'm afraid. Hope everything is sorted and works out for you.

 

Hope everyone else is OK and had a happy Christmas.

 

Hugs. Barton.x

LYNDYLOO
Member

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

Afternoon ladies

Just to let you all know at chemo unit had bloods done neutrfils too low 1.4 should be 1.5 minimum so might have to have dose reduction or might not get tablets at all. Has that ever happened to any of you?

Never had these sorts of problems on combo.

Hope everyone has had a good Xmas.
Linda

LYNDYLOO
Member

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

Evening George

Pleased everything was OK. I am doing OK thank you.

Have a very merry Christmas.

Linda

Moijan
Member

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

Good news then Georgexx

 

thank you 

 

yes, happy Christmas allxx

george
Member

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

Hi Lyndy,

Neutrophils held up so started cycle 6 on Thursday, just in time for Christmas๐ŸŽ„๐ŸŽ„Hope you are doing well.
Good luck for 10th Jan, Moijan.

Merry Christmas everyone ๐ŸŽ‰๐ŸŽ‰๐Ÿค—

George x
LYNDYLOO
Member

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

Afternoon George

Hope everything went well regarding bloods and you able to start next course of Cap.

Have a lovely Xmas everyone.

Linda

Moijan
Member

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

Thank you lindyloo. Will know on 10th Januaryxx

 

LYNDYLOO
Member

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

Evening Barton,Moijan

Thank you for getting back to me. With never from sore lips in the past it must be treatment. I am going to mention it when I go to chemo unit next week. I have been trying unistat today to see whether that helps. I had took it on holiday this
year.

I was quite lucky looking back when having chemo back in 2009 did not have nose bleed or sore mouth think that is why I am finding it difficult.

Anyway least I dont need to take them again until
29.

Moijan hope your new treatment is going well.

Linda

Barton
Member

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

Hello Linda. Yes, as redriding and Moijan suggest, I would try a lipsalve. I have had the cracked lip (just in one corner) only once on Cape, but I use the Boots Original all the time anyway. I have had dry lips for as long as I can remember, so I keep a lipsalve in a pocket of just about everything I own that has a pocket and in every handbag too! Probably a bit ott, but I if I forget and don't have one, my lips drive me nuts all day. Good luck.

Hugs. Barton.x

Moijan
Member

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

Hi Lindyloo, yes I get cracked lips, just in the corner of my mouth. Am using lip salve ++

 

im on fulvestrant. I think it's partly my licking my lips and chewing them occasionally...prob stress...hope yours improves.

 

Moijanxx

redridinghood
Member

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

Just reading here, Lyndyloo. You mention your lips. I am no expert, but do have very dry lips anyway, which would crack if I didn't treat them daily, especially after brushing my teeth. Often several times a day. Summer and winter. Vaseline sounds a good idea, but have you tried specialist lip salves? I use Chapstick...... it's been around a long time! I use the 'original', which has little flavour, although I may be used to it. It works where other things have failed.......for me. But at the price it is worth trying a few. They are made up of a long mixture of things and designed for lips. I keep one in my bag, just in case. There are other makes too. I think you can get chapstick in supermarkets, and of course most chemists. There are other flavours, but I like the quiet 'original'.

 

Just a thought and perhaps worth a try.

 

mo

LYNDYLOO
Member

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

Hi George

Thank you for getting back to me. I am definitely going to ask when I see oncologist on 8 January. I think all hospitals should work to same standard of care bu mine certainly falls short.

Good luck with your bloods which I am sure will fine. Enjoy coffee and shopping.

I seemed to have developed on this course of treatment sore cracked lips. Actually inside of mouth is fine no mouth ulcers etc. I was wondering have you ever had it and what treatment worked for you. I have just been using Vaseline. Was pondering about chemo unit a ring but are always rushed off their feet. It seems such a minor issue.

I never had any problems when I was on Everolimus or when I was on chemo back in 2009. I even had a nose bleed this morning. Never had one in my life and I am 65. Don't think this treatment is any good for me or doseage might need reducing.

Sorry to moan on just feel fed up today.

Linda

george
Member

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

Hi Lyndy

Don't want to over complicate things regarding scans, suspect oncs might put a date on request forms but, me being me, I ask anyway. ๐Ÿ˜‰Best to check with your hospital. Speaking of which, on train now to get bloods done and , hopefully, pick up cycle 6. Going to treat myself to a coffee and little shop in Grand Central afterwards. Needs must๐Ÿ˜Š

Have a good day ๐Ÿ˜Š

George x
LYNDYLOO
Member

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

Morning George

Thank you for getting back to me regarding watery eyes. It tends to be first thing in the morning and then later again on the evening. I will certainly take your advice regarding scans. You would think though when oncologist request scans they could put on the paperwork that they need results back rather than leaving it to the patient.

Janieb

Enjoy holiday and good you are having an extra week off cap. My eyes like yours have always been sensitive to cold and wind but normally have been fine when in a normal environment. I certainly look into your suggestion and George regarding getting some drops to put in.

Enjoy Xmas.

Linda

george
Member

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

Hi Janieb,

Enjoy your extra week off Cape and good luck with scan results in the new year. Good for you booking a skiing holiday. I only went once and I was a total disaster on skis. I was totally black and blue from falling over so often. My husband loves skiing๐Ÿ˜Š

Hope all well with other Capers๐Ÿ˜Š

George
george
Member

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

Hi Lyndy

Sorry your hospital takes so long to report scan results. As I said, when I go for my MRI, I explain to the radiographers that onc will be looking to change treatment depending on the results ( this is usually the case) and could they speed up the reporting process. I know, in my hospital, there us a code they can use. The fact they have to compare it with a previous scan shouldn't delay things too much. My current scan was compared with the one I had in August. I totally agree, 5 weeks is too long to wait. Can you talk to your oncologist about this?
Regarding dry eyes, I tend to use Celluvist which is very good.
I do hope you can try to put scan results to the back of your mind over Christmas (easier said than done, I know) and enjoy the festivities. Good to be having a week off Cape. Neutrophils permitting, I start cycle 6 on Thursday.
Have a good week. Can't believe there is only a week until Christmas day. Off shopping (again) later. So many sales seem to have started early

George x
janieb
Member

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

HI Linda
I also get runny eyes especially when I go for a walk in the cold but also dry eyes at night - just isince the last round . Eye drops with Hyalauric acid helps as my optician advised My feet are a bit sore too so taking it easy for the last couple of days of this round, which is really hard for me especially at this time of year ! Same thing happened in the last round but onc wasnโ€™t too concerned. I just want to be ok to ski in January! (Not sure what hell think of that ! )
Iโ€™ve got an extra week off at Christmas so not back till Jan 2 when I get scan results!
๐ŸŽ„๐Ÿค—
LYNDYLOO
Member

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

Evening Barton

Thank you for your reply. I heard it can be caused by dry eyes. I remember I had the same problem when I was going through chemo back in 2009 they gave me drops. At the time I had lost all my eyelashes and hairs up my nose I was told it could be that which was causing the problem.

I know hair loss can be one of the side effects hopefully that does not happen.

Hope you are doing OK.
Linda

Barton
Member

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

Hello Linda. You ask about runny nose and runny eyes. I get a runny nose sometimes, and also an itchy nose - inside my nose, which means I have to be very careful giving it a little scratch in case people think I am just picking my nose! Luckily, I get that mostly at night Smiley Happy

 

I don't suffer from runny eyes, luckily. Actually, everything I have read on this, and one other, forum, says that it is caused by dry eyes! Yes, I know - sounds nuts, but I think it means that as your eyes are so dry, your body is trying to compensate. A lot of people use eye drops. It is definitely something you should talk to your Onc about at your next appointment.

 

Hope everyone else is as well as can be expected, with few, mild or preferably no side effects.

 

Hugs. Barton.x

LYNDYLOO
Member

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

Afternoon George

Thank you for reply regarding scans results. Never thought of asking the radiograher about speeding up results. Although how it works at the hospital I attend I have to ring up breast nurse to see whether they have been reported then an appointment is made. Unless I ring I don't think I would ever receive an appointment. Rubbish really. I sometimes think I should just leave it to them to see what happens rather than me chasing up things all the time.

One of the reason they have told me in the past is it takes longer to report as they have to look at previous scans to see whether there has been any change. Surely it can't take 5 weeks. The earliest I have had any scan results has been 3 weeks but this time they are blaming we have 2 bank holidays.

Enough about me. How are you doing on the lower dose of Cap? Has the d now disappeared. Wondering whether anyone has had watering eyes and nose. I tend to get it first thing in morning it last until lunch time. Very annoying if I am going out and trying to put eye makeup on.

I know it can be one of the side effects but what can do to stop it happening.

Upto now apart from that I tend to feel more tired than usual as normally have quite abit of energy.

Are u all sorted for Xmas?

Linda

george
Member

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

Thanks, Nicky. Yes, pleased I have had the results so at least I know what is happening and can enjoy Christmas-until next scan, TM result. Yep, as I keep saying, the fun never stops๐Ÿ™„Good luck for your scan results too.
Lyndy sorry you have to wait so long. Has the hospital explained why? When I go for my scans, I always ask the radiographers if they can report them in time for my next Oncology appointment and they usually oblige as there is a code they can use to fast track reports. Easy for me to say, but try not to worry as you are on treatment which will be doing something. Also, good news you are off the tablets over Christmas so you can make the most of the festivities. I so enjoy my week off but always get the feeling I have forgotten something-to take my tablets!
Barton, you are very good taking your tablets so early. It has been a long time since I have seen 6.00am๐Ÿ™„. I usually take mine between 8.00-9.00. If I eat early then I take them around 9.00pm with a piece of toast. We all have our own routines which work for us๐Ÿ˜Š
Have a good weekend ladies. Raining heavily hereโ˜”

George x
LYNDYLOO
Member

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

Morning Nicky

Thank you for your kind words. I wish the hospital that I attend was on the ball like yours. As I have said in the must be very reassuring for you as you know they have your best interest in heart.

Hope your scan goes well and you are stable for a long time.

Carolyn

Thank you for your support regarding scan results. It is worrying whether anyone looks at the scans straight away if any changes are acted on quickly as alot can change in 5 weeks. Least I won't be on tablets over Xmas.

Hope you all have a great Xmas.

Linda